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Cochrane Database of Systematic Reviews

The effectiveness and cost‐effectiveness of hospital‐based specialist palliative care for adults with advanced illness and their caregivers

Information

DOI:
https://doi.org/10.1002/14651858.CD012780.pub2Copy DOI
Database:
  1. Cochrane Database of Systematic Reviews
Version published:
  1. 30 September 2020see what's new
Type:
  1. Intervention
Stage:
  1. Review
Cochrane Editorial Group:
  1. Cochrane Pain, Palliative and Supportive Care Group

Copyright:
  1. Copyright © 2020 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

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Authors

  • Sabrina Bajwah

    Correspondence to: Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK

    [email protected]

  • Adejoke O Oluyase

    Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK

  • Deokhee Yi

    Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK

  • Wei Gao

    Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK

  • Catherine J Evans

    Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK

  • Gunn Grande

    School of Health Sciences, University of Manchester, Manchester, UK

    Manchester Academic Health Science Centre, Manchester, UK

  • Chris Todd

    School of Health Sciences, University of Manchester, Manchester, UK

    Manchester Academic Health Science Centre, Manchester, UK

    Manchester University NHS Foundation Trust, Manchester, UK

  • Massimo Costantini

    Palliative Care Unit, Azienda USL-IRCCS, Reggio Emilia, Italy

  • Fliss E Murtagh

    Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK

    Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK

  • Irene J Higginson

    Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK

Contributions of authors

SB won funding for the review from National Institute for Health Research Health Services and Delivery Research programme (Project Number 16/02/17) and was Chief Investigator on the grant. SB, DY, CJE, GG, CT, FEM, MC and IJH contributed to the writing of the 2017 protocol. AO carried out the searches. SB and AO screened the studies and extracted the data. All authors reviewed the final studies for inclusion. AO entered the data. AO and DY carried out the analyses. SB, AO, DY and IJH prepared the final text. ll authors reviewed and contributed to the final draft.

Sources of support

Internal sources

  • Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, London, UK

  • Institute of Psychiatry, King's College London, London, UK

External sources

  • School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK

  • Amsterdam Institute of Social Science Research, University of Amsterdam, Amsterdam, Netherlands

  • Regional Palliative Care Network, IRCCS AOU San Martino‐IST, Genoa, Italy

  • National Institute for Health Research (NIHR), UK

    Earlier drafts of this review were completed by the MORECare project, which was funded by the NIHR and managed by the Medical Research Council as part of the Methodology Research Programme (project number: G0802654/1).

  • The Atlantic Philanthropies and Cicely Saunders International, Other

    The review was finalised through support from The Atlantic Philanthropies and Cicely Saunders International

  • NIHR Health Services and Delivery Research (HS&DR), UK

    Ongoing work for this project has been funded by NIHR HS&DR Project number: 16/02/17

Declarations of interest

SB: none known; SB is a Consultant in Palliative Medicine and manages patients with advanced life‐threatening illness.

AO: none known.

DY: none known.

WG: none known.

GG: none known.

CT: none known.

MC: none known.

FEM: none known; FEM is a Consultant in Palliative Medicine and manages patients with advanced life‐threatening illness.

CJE: none known; CJE is an Honorary Nurse Consultant and manages patients with advanced life‐threatening illness.

IJH: none known; IJH is a Consultant in Palliative Medicine and manages patients with advanced life‐threatening illness.

Acknowledgements

We acknowledge Barbara Daveson, Melinda Smith, Hamid Benalia, Emily West, Sue Hall, Barbara Gomes and Nancy Preston who contributed to earlier drafts of the protocol.

BuildCARE members: Emma Bennett, Francesca Cooper, Barbara Daveson, Susanne de Wolf‐Linder, Mendwas Dzingina, Clare Ellis‐Smith, Catherine Evans, Taja Ferguson, Lesley Henson, Irene Higginson, Bridget Johnston, Pauline Kane, Peter Lawlor, Paul McCrone, Regina McQuillan, Diane Meier, Sean Morrison, Fliss Murtagh, Charles Normand, Steve Pantilat, Ana Reison, Karen Ryan, Lucy Selman, Melinda Smith, Katy Tobin, Rowena Vohora and Gao Wei.

We are grateful to the following peer reviewers for their time and comments: Brian Duncan, Ollie Minton, Claudia Virdun, and Abhijna Vithal Yergolkar.

Cochrane Review Group funding acknowledgement: this project was funded by the National Institute for Health Research (NIHR) via Cochrane Infrastructure funding to the Cochrane Pain, Palliative and Supportive Care Review Group (PaPaS). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

This research was funded by the National Institute for Health Research Health Services and Delivery Research programme (Project Number 16/02/17). It was also supported by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care South London, now recommissioned as NIHR Applied Research Collaboration South London. The views expressed in this publication are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Version history

Published

Title

Stage

Authors

Version

2020 Sep 30

The effectiveness and cost‐effectiveness of hospital‐based specialist palliative care for adults with advanced illness and their caregivers

Review

Sabrina Bajwah, Adejoke O Oluyase, Deokhee Yi, Wei Gao, Catherine J Evans, Gunn Grande, Chris Todd, Massimo Costantini, Fliss E Murtagh, Irene J Higginson

https://doi.org/10.1002/14651858.CD012780.pub2

2017 Sep 02

The effectiveness and cost‐effectiveness of inpatient specialist palliative care in acute hospitals for adults with advanced illness and their caregivers

Protocol

Sabrina Bajwah, Deokhee Yi, Gunn Grande, Chris Todd, Massimo Costantini, Fliss E Murtagh, Catherine J Evans, Irene J Higginson

https://doi.org/10.1002/14651858.CD012780

Differences between protocol and review

There are a number of differences between the published protocol (Bajwah 2017), and this review.

Study design

In the published protocol, we stated that we will include a number of study designs including randomised trials, non‐randomised trials, controlled before‐and‐after studies, interrupted time series studies and repeated measures studies. Due to the expansion of our review from only inpatient specialist palliative care to include other models of HSPC (HSPC) and given that RCTs are the most rigorous study design, we refrained from analysing studies that were not RCTs in order to reduce heterogeneity and allow meta‐analyses where possible. We initially wanted to minimise cross‐contamination by including only cluster‐randomised studies. However, our project advisory group suggested that both cluster and non‐cluster‐RCTs should be included to capture the breadth of evidence from RCTs that met our eligibility criteria.

Intervention

The published protocol was focussed on assessing the effectiveness and cost‐effectiveness of inpatient specialist palliative care in acute hospitals for adults with advanced illness and their unpaid caregivers. However, we expanded the scope of our review from inpatient specialist palliative care to all models of HSPC, and the title has been amended to reflect this. Given that models of HSPC are evolving, we broadened the review to increase relevance for clinical practice and policy makers with the potential to aid the future development, funding and implementation of evidence‐based HSPC. As a result of expanding the scope of our review to cover models of HSPC, we also expanded the scope of usual care to "inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting".

In our protocol, we stated that the intervention should be administered by hospital staff who have completed specialist training in palliative care or who had obtained clinical competencies and professional characteristics required for the delivery of inpatient specialist palliative care through clinical experience. Experts in our project advisory group recommended that we include studies where the training of the palliative care team was unclear, with eligibility informed by activity of delivering specialist palliative care rather than level of specialist training. In order to capture this difference, we included studies where the training/clinical competence of the palliative care team was described as well as studies that simply stated the involvement of a palliative care team.

Outcomes

We changed our primary outcome from pain to two primary outcomes, patient HRQoL (previously, a secondary outcome) and patient symptom burden assessed using a composite measure of two or more symptoms (a new outcome we introduced following expert advice). The clinical experts on our project advisory group suggested that pain may not be an appropriate outcome for those with non‐malignant conditions, where pain may be less prevalent compared to patients with cancer. Furthermore, the aim of palliative care is to improve quality of life, while also ensuring effective symptom management.

We have further provided clarity around the outcomes we presented in our protocol.

  • We included number of home deaths in the review as a proxy for achieving patient preferred place of death, as people’s preference is mostly to die at home (Gomes 2012).

  • In our protocol, one of our secondary outcomes was patient's other symptoms (e.g. physical, psychological, social or spiritual domains). We specifically presented data on patient anxiety and patient depression for this outcome.

  • Another secondary outcome in our protocol was satisfaction with care, which we reported as patient satisfaction with care and unpaid caregiver satisfaction with care in this review.

  • We had unpaid caregiver symptom control (e.g. physical, psychological, social or spiritual domains) as an outcome in our protocol. In this review, we presented unpaid caregiver anxiety and caregiver depression for caregiver symptom control.

  • For the caregiver pre‐ and post‐bereavement outcome we reported in the protocol, we presented caregiver grief and caregiver quality of life.

  • Although we presented achieving preferred place of care or death as one outcome in the protocol, we split it into two outcomes in the review: achieving patient preferred place of death and achieving patient preferred place of care.

  • We added a new secondary outcome (breathlessness) to this review because of the recommendations we received from clinical experts in our project advisory group on its relevance as an appropriate outcome in non‐malignant conditions.

Given the expansion of these outcomes, there has been a change in the order of the outcomes reported in this review compared to the protocol. Compared to our protocol, we now have two economic outcomes: resource use; costs and cost‐effectiveness. Resource use encompasses institutional care services use, outpatient clinic services use, community care services use, unpaid caregiver care and medication and other resources. Where possible, we summarised data on cost and cost‐effectiveness of HSPC.

Data analysis and assessments

We added early versus late palliative care as a subgroup analysis which was recommended for inclusion in our review by clinical experts because of its relevance to practice. Although we had initially specified that pain and other outcomes presented as binary data will be treated as binary outcomes in our published protocol, this was not possible as most studies presented their outcomes as continuous data. The only outcome where we were able to calculate an odds ratio and 95% confidence intervals in addition to standardised mean differences was patient depression.

We expanded our risk of bias (ROB) methods by carrying out separate assessments for all subjective outcomes (e.g. health‐related quality of life) and all objective outcomes (e.g. mortality). Where studies did not include either subjective or objective outcomes, we left the domain that was not included blank. We added the domain 'Other bias (other sources of bias)' in the full review in order to assess whether groups were balanced at baseline and whether differences at baseline were adjusted for. We further expanded on the response options for 'size of study bias'. In particular, we assessed the following as unclear risk of bias under 'size of study bias': studies that had < 50 participants in one treatment arm and 50 to 199 participants in another treatment arm; and studies that had 50 to 199 participants in one treatment arm and > 200 participants in another treatment arm.

We had planned to use either a fixed‐effects or random‐effects model for meta‐analysis. Due to the different models of HSPC in our review, we presented only random‐effects models as we are estimating the average effect across HSPC rather than any single true effect. We had planned to estimate an intra‐class correlation coefficient (ICC) where the authors of cluster‐RCTs did not carry out adjustment or provide an ICC. However, we decided to use an estimate of ICC we obtained from a previous Cochrane Review in adjusting for clustering in McCorkle 2015. We contacted the authors of McCorkle 2015 for their ICC but at the time of publication they have not responded. In our protocol we stated that we would contact the original investigators for missing data and describe any strategy used for imputing missing data. We decided to only contact authors for missing data without carrying out imputations as this is the preferred method for dealing with missing data (Higgins 2011). We initially wanted to explore reasons for heterogeneity in sensitivity analysis. However, Cochrane editors recommended the use of subgroup analysis for assessing heterogeneity. Consequently, we explored heterogeneity using subgroup analysis, while we used sensitivity analysis to test the estimate we used in adjusting for clustering in the cluster‐RCT. As we did not include nonrandomised studies, we did not have to pay particular attention to selection bias and reporting bias in such studies. We did not carry out a subgroup analysis assessing provision of single or few components of HSPC because very few studies provided a single component of HSPC. One of our subgroup analyses in the protocol was models of specialist palliative care. In our protocol, we have clarified this as models of HSPC because we expanded our review to include more models of HSPC.

Given that combining endpoint scores and change scores is not recommended when using standardised mean differences (SMDs) and also that Cochrane does not recommend pooling adjusted and unadjusted estimates together, we pooled studies presenting adjusted endpoint scores as our main meta‐analysis, while we carried out sensitivity analyses with studies reporting unadjusted endpoint scores, adjusted change scores and unadjusted change scores. This is a change from our protocol based on advice from Cochrane editors.

In our protocol, we planned to include three 'Summary of Findings' tables: inpatient hospital specialist palliative care and usual care versus inpatient hospital care without any specialist palliative care input (e.g. oncological care only); inpatient hospital specialist palliative care and usual care versus community care (e.g. primary or specialist care provided in the patient’s place of residence); and inpatient hospital specialist palliative care and usual care versus hospice care provided outside of the hospital setting. We decided to present only one 'Summary of Findings' (SoF) table, rather than three, for the comparison of HSPC (plus or minus usual care) versus usual care as experts in our project advisory group advised us this comparison alone would be the most informative for decision‐makers. We expanded usual care to "inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting". We presented results on both cost and cost‐effectiveness in our SoF table as opposed to only cost‐effectiveness in our protocol.

We initially stated that we would rate the strength of the evidence using a tool by Van Tulder 2003. However, we decided to use the GRADE approach in accordance with Cochrane standards.

Keywords

MeSH

PICOs

Population
Intervention
Comparison
Outcome

The PICO model is widely used and taught in evidence-based health care as a strategy for formulating questions and search strategies and for characterizing clinical studies or meta-analyses. PICO stands for four different potential components of a clinical question: Patient, Population or Problem; Intervention; Comparison; Outcome.

See more on using PICO in the Cochrane Handbook.

PRISMA flow diagram.

Figures and Tables -
Figure 1

PRISMA flow diagram.

A figure describing the power of included studies at recruitment and follow‐up

Figures and Tables -
Figure 2

A figure describing the power of included studies at recruitment and follow‐up

A figure showing the domains of HSPC in the studies that either included certified experts in palliative care or those described as palliative care clinicians

Figures and Tables -
Figure 3

A figure showing the domains of HSPC in the studies that either included certified experts in palliative care or those described as palliative care clinicians

A figure showing the domains of HSPC in studies that were unclear about palliative care training

Figures and Tables -
Figure 4

A figure showing the domains of HSPC in studies that were unclear about palliative care training

Risk of bias summary: review authors' judgements about each risk of bias item for each included study.

Figures and Tables -
Figure 5

Risk of bias summary: review authors' judgements about each risk of bias item for each included study.

Risk of bias graph: review authors' judgements about each risk of bias item presented as percentages across all included studies.

Figures and Tables -
Figure 6

Risk of bias graph: review authors' judgements about each risk of bias item presented as percentages across all included studies.

Funnel plot of comparison: 1 Patient health‐related quality of life, outcome: 1.1 HSPC versus usual care on patient HRQoL: adjusted endpoint values.

Figures and Tables -
Figure 7

Funnel plot of comparison: 1 Patient health‐related quality of life, outcome: 1.1 HSPC versus usual care on patient HRQoL: adjusted endpoint values.

Comparison 1: Patient health‐related quality of life, Outcome 1: HSPC versus usual care on patient HRQoL: adjusted endpoint values

Figures and Tables -
Analysis 1.1

Comparison 1: Patient health‐related quality of life, Outcome 1: HSPC versus usual care on patient HRQoL: adjusted endpoint values

Comparison 1: Patient health‐related quality of life, Outcome 2: HSPC versus usual care on patient HRQoL: adjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 1.2

Comparison 1: Patient health‐related quality of life, Outcome 2: HSPC versus usual care on patient HRQoL: adjusted endpoint values (excluding McCorkle 2015)

Comparison 1: Patient health‐related quality of life, Outcome 3: HSPC versus usual care on patient HRQoL: unadjusted endpoint values

Figures and Tables -
Analysis 1.3

Comparison 1: Patient health‐related quality of life, Outcome 3: HSPC versus usual care on patient HRQoL: unadjusted endpoint values

Comparison 1: Patient health‐related quality of life, Outcome 4: HSPC versus usual care on patient HRQoL: unadjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 1.4

Comparison 1: Patient health‐related quality of life, Outcome 4: HSPC versus usual care on patient HRQoL: unadjusted endpoint values (excluding McCorkle 2015)

Comparison 1: Patient health‐related quality of life, Outcome 5: HSPC versus usual care on patient HRQoL: unadjusted change values

Figures and Tables -
Analysis 1.5

Comparison 1: Patient health‐related quality of life, Outcome 5: HSPC versus usual care on patient HRQoL: unadjusted change values

Comparison 2: Patient symptom burden, Outcome 1: HSPC versus usual care on patient symptom burden: adjusted endpoint values

Figures and Tables -
Analysis 2.1

Comparison 2: Patient symptom burden, Outcome 1: HSPC versus usual care on patient symptom burden: adjusted endpoint values

Comparison 2: Patient symptom burden, Outcome 2: HSPC versus usual care on patient symptom burden: unadjusted endpoint values

Figures and Tables -
Analysis 2.2

Comparison 2: Patient symptom burden, Outcome 2: HSPC versus usual care on patient symptom burden: unadjusted endpoint values

Comparison 2: Patient symptom burden, Outcome 3: HSPC versus usual care on patient symptom burden: unadjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 2.3

Comparison 2: Patient symptom burden, Outcome 3: HSPC versus usual care on patient symptom burden: unadjusted endpoint values (excluding McCorkle 2015)

Comparison 2: Patient symptom burden, Outcome 4: HSPC versus usual care on patient symptom burden: adjusted change values

Figures and Tables -
Analysis 2.4

Comparison 2: Patient symptom burden, Outcome 4: HSPC versus usual care on patient symptom burden: adjusted change values

Comparison 2: Patient symptom burden, Outcome 5: HSPC versus usual care on patient symptom burden: adjusted change values (excluding McCorkle 2015)

Figures and Tables -
Analysis 2.5

Comparison 2: Patient symptom burden, Outcome 5: HSPC versus usual care on patient symptom burden: adjusted change values (excluding McCorkle 2015)

Comparison 2: Patient symptom burden, Outcome 6: HSPC versus usual care on patient symptom burden: unadjusted change values

Figures and Tables -
Analysis 2.6

Comparison 2: Patient symptom burden, Outcome 6: HSPC versus usual care on patient symptom burden: unadjusted change values

Comparison 3: Patient satisfaction with care, Outcome 1: HSPC versus usual care on patient satisfaction with care: adjusted endpoint values

Figures and Tables -
Analysis 3.1

Comparison 3: Patient satisfaction with care, Outcome 1: HSPC versus usual care on patient satisfaction with care: adjusted endpoint values

Comparison 4: Achieving patient preferred place of death, Outcome 1: HSPC versus usual care on home deaths

Figures and Tables -
Analysis 4.1

Comparison 4: Achieving patient preferred place of death, Outcome 1: HSPC versus usual care on home deaths

Comparison 5: Pain, Outcome 1: HSPC versus usual care on pain: adjusted endpoint values

Figures and Tables -
Analysis 5.1

Comparison 5: Pain, Outcome 1: HSPC versus usual care on pain: adjusted endpoint values

Comparison 5: Pain, Outcome 2: HSPC versus usual care on pain: adjusted change values

Figures and Tables -
Analysis 5.2

Comparison 5: Pain, Outcome 2: HSPC versus usual care on pain: adjusted change values

Comparison 5: Pain, Outcome 3: HSPC versus usual care on pain: unadjusted change values

Figures and Tables -
Analysis 5.3

Comparison 5: Pain, Outcome 3: HSPC versus usual care on pain: unadjusted change values

Comparison 6: Patient anxiety, Outcome 1: HSPC versus usual care on patient anxiety: adjusted endpoint values

Figures and Tables -
Analysis 6.1

Comparison 6: Patient anxiety, Outcome 1: HSPC versus usual care on patient anxiety: adjusted endpoint values

Comparison 6: Patient anxiety, Outcome 2: HSPC versus usual care on patient anxiety: adjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 6.2

Comparison 6: Patient anxiety, Outcome 2: HSPC versus usual care on patient anxiety: adjusted endpoint values (excluding McCorkle 2015)

Comparison 6: Patient anxiety, Outcome 3: HSPC versus usual care on patient anxiety: unadjusted endpoint values

Figures and Tables -
Analysis 6.3

Comparison 6: Patient anxiety, Outcome 3: HSPC versus usual care on patient anxiety: unadjusted endpoint values

Comparison 6: Patient anxiety, Outcome 4: HSPC versus usual care on patient anxiety: unadjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 6.4

Comparison 6: Patient anxiety, Outcome 4: HSPC versus usual care on patient anxiety: unadjusted endpoint values (excluding McCorkle 2015)

Comparison 6: Patient anxiety, Outcome 5: HSPC versus usual care on patient anxiety: unadjusted change values

Figures and Tables -
Analysis 6.5

Comparison 6: Patient anxiety, Outcome 5: HSPC versus usual care on patient anxiety: unadjusted change values

Comparison 6: Patient anxiety, Outcome 6: HSPC versus usual care on patient anxiety in different populations: adjusted endpoint values

Figures and Tables -
Analysis 6.6

Comparison 6: Patient anxiety, Outcome 6: HSPC versus usual care on patient anxiety in different populations: adjusted endpoint values

Comparison 6: Patient anxiety, Outcome 7: HSPC versus usual care on patient anxiety in different populations: adjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 6.7

Comparison 6: Patient anxiety, Outcome 7: HSPC versus usual care on patient anxiety in different populations: adjusted endpoint values (excluding McCorkle 2015)

Comparison 6: Patient anxiety, Outcome 8: EPC vs LPC on patient anxiety: adjusted endpoint values

Figures and Tables -
Analysis 6.8

Comparison 6: Patient anxiety, Outcome 8: EPC vs LPC on patient anxiety: adjusted endpoint values

Comparison 6: Patient anxiety, Outcome 9: Effect of MDT‐led services on patient anxiety: adjusted endpoint values

Figures and Tables -
Analysis 6.9

Comparison 6: Patient anxiety, Outcome 9: Effect of MDT‐led services on patient anxiety: adjusted endpoint values

Comparison 6: Patient anxiety, Outcome 10: Effect of MDT‐led services on patient anxiety: adjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 6.10

Comparison 6: Patient anxiety, Outcome 10: Effect of MDT‐led services on patient anxiety: adjusted endpoint values (excluding McCorkle 2015)

Comparison 6: Patient anxiety, Outcome 11: HSPC versus usual care on patient anxiety in different countries: adjusted endpoint values

Figures and Tables -
Analysis 6.11

Comparison 6: Patient anxiety, Outcome 11: HSPC versus usual care on patient anxiety in different countries: adjusted endpoint values

Comparison 6: Patient anxiety, Outcome 12: HSPC versus usual care on patient anxiety in different countries: adjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 6.12

Comparison 6: Patient anxiety, Outcome 12: HSPC versus usual care on patient anxiety in different countries: adjusted endpoint values (excluding McCorkle 2015)

Comparison 7: Unpaid caregiver anxiety, Outcome 1: HSPC versus usual care on unpaid caregiver anxiety: unadjusted endpoint values

Figures and Tables -
Analysis 7.1

Comparison 7: Unpaid caregiver anxiety, Outcome 1: HSPC versus usual care on unpaid caregiver anxiety: unadjusted endpoint values

Comparison 8: Patient depression, Outcome 1: HSPC versus usual care on patient depression: adjusted endpoint values

Figures and Tables -
Analysis 8.1

Comparison 8: Patient depression, Outcome 1: HSPC versus usual care on patient depression: adjusted endpoint values

Comparison 8: Patient depression, Outcome 2: HSPC versus usual care on patient depression: unadjusted endpoint values

Figures and Tables -
Analysis 8.2

Comparison 8: Patient depression, Outcome 2: HSPC versus usual care on patient depression: unadjusted endpoint values

Comparison 8: Patient depression, Outcome 3: HSPC versus usual care on patient depression: unadjusted endpoint values (excluding McCorkle 2015)

Figures and Tables -
Analysis 8.3

Comparison 8: Patient depression, Outcome 3: HSPC versus usual care on patient depression: unadjusted endpoint values (excluding McCorkle 2015)

Comparison 8: Patient depression, Outcome 4: HSPC versus usual care on patient depression: adjusted change values

Figures and Tables -
Analysis 8.4

Comparison 8: Patient depression, Outcome 4: HSPC versus usual care on patient depression: adjusted change values

Comparison 8: Patient depression, Outcome 5: HSPC versus usual care on patient depression: unadjusted change values

Figures and Tables -
Analysis 8.5

Comparison 8: Patient depression, Outcome 5: HSPC versus usual care on patient depression: unadjusted change values

Comparison 8: Patient depression, Outcome 6: HSPC versus usual care on patient depression as a binary outcome

Figures and Tables -
Analysis 8.6

Comparison 8: Patient depression, Outcome 6: HSPC versus usual care on patient depression as a binary outcome

Comparison 9: Unpaid caregiver depression, Outcome 1: HSPC versus usual care on unpaid caregiver depression: adjusted endpoint values

Figures and Tables -
Analysis 9.1

Comparison 9: Unpaid caregiver depression, Outcome 1: HSPC versus usual care on unpaid caregiver depression: adjusted endpoint values

Comparison 9: Unpaid caregiver depression, Outcome 2: HSPC versus usual care on unpaid caregiver depression: unadjusted endpoint values

Figures and Tables -
Analysis 9.2

Comparison 9: Unpaid caregiver depression, Outcome 2: HSPC versus usual care on unpaid caregiver depression: unadjusted endpoint values

Comparison 10: Unpaid caregiver quality of life, Outcome 1: HSPC versus usual care on unpaid caregiver quality of life: unadjusted endpoint values

Figures and Tables -
Analysis 10.1

Comparison 10: Unpaid caregiver quality of life, Outcome 1: HSPC versus usual care on unpaid caregiver quality of life: unadjusted endpoint values

Comparison 11: Unpaid caregiver burden, Outcome 1: HSPC versus usual care on unpaid caregiver burden: adjusted change values

Figures and Tables -
Analysis 11.1

Comparison 11: Unpaid caregiver burden, Outcome 1: HSPC versus usual care on unpaid caregiver burden: adjusted change values

Comparison 12: Patient breathlessness, Outcome 1: HSPC versus usual care on patient breathlessness: adjusted endpoint values

Figures and Tables -
Analysis 12.1

Comparison 12: Patient breathlessness, Outcome 1: HSPC versus usual care on patient breathlessness: adjusted endpoint values

Comparison 12: Patient breathlessness, Outcome 2: HSPC versus usual care on patient breathlessness: unadjusted endpoint values

Figures and Tables -
Analysis 12.2

Comparison 12: Patient breathlessness, Outcome 2: HSPC versus usual care on patient breathlessness: unadjusted endpoint values

Comparison 12: Patient breathlessness, Outcome 3: HSPC versus usual care on patient breathlessness: unadjusted change values

Figures and Tables -
Analysis 12.3

Comparison 12: Patient breathlessness, Outcome 3: HSPC versus usual care on patient breathlessness: unadjusted change values

Summary of findings 1. Hospital‐based specialist palliative care compared to usual care for adults with advanced illness and their caregivers/families

Hospital‐based specialist palliative care compared to usual care for adults with advanced illness and their unpaid caregivers/families

Patient or population: adults with advanced illness and their unpaid caregivers/families
Setting: hospital and home
Intervention: hospital‐based specialist palliative care
Comparison: usual care

Outcomes

Anticipated absolute effects* (95% CI)

Relative effect
(95% CI)

№ of participants
(studies)

Certainty of the evidence
(GRADE)

Risk with usual care

Risk with hospital‐based specialist palliative care

Patient health‐related quality of life (HRQoL)i, SD units
(higher scores indicate better quality of life)
Follow‐up: range two weeks after hospitalisation to 13 months

Mean (SD) ranging from ‐45.4 (26.83) to 131.14 (26.62)

SMD 0.26 SDs higher
(0.15 higher to 0.37 higher)

1344
(10 RCTs)

⊕⊕⊝⊝
LOWa

Patient symptom burden assessed with generalised measuresii, SD units

(lower scores indicate lower symptom burden)
Follow‐up: range two weeks after hospitalisation to 13 months

Mean (SD) ranging from ‐19.3 (4.2) to 268.59 (201.65)

SMD 0.26 SDs lower
(0.41 lower to 0.12 lower)

761
(6 RCTs)

⊕⊝⊝⊝
VERY LOWa,b

Patient satisfaction with careiii, SD units
(higher scores indicate better patient satisfaction)
Follow‐up: range 3 months to 6 months

Mean (SD) ranging from 6.4 (1.1) to 68.37 (9.03)

SMD 0.36 SDs higher

(0.41 higher to 0.57 higher)

337

(2 RCTs)

⊕⊕⊝⊝
LOWa

Achieving patient preferred place of death (measured by number of patients with home death)

Follow‐up: range 1 month to 13 months

462 per 1000

583 per 1000

(513 to 649)

OR 1.63 higher

(1.23 higher to 2.16 higher)

861
(7 RCTs)

⊕⊕⊝⊝
LOWa

Painiv, SD units
(lower scores indicate less pain)
Follow‐up: range 8 weeks to 6 months

Mean (SD) ranging from 2.2 (3.7) to 28.19 (32.81)

SMD 0.16 SDs lower
(0.33 lower to 0.01 higher)

525
(4 RCTs)

⊕⊝⊝⊝
VERY LOWa,b

Unpaid caregiver burdenv
Follow‐up: 6 months

Only two studies reported adjusted endpoint values but we could not pool them in a meta‐analysis. They both found no between‐group difference between HSPC and usual care

170
(2 RCTs)

⊕⊝⊝⊝
VERY LOWa,c

Cost and cost‐effectiveness

Of 13 studies reporting costs of HSPC, nine studies found no difference between HSPC and usual care and two studies favoured HSPC over usual care. The difference in cost was unclear in one study, while another study reported mixed findings with lower cost of hospitalisation in favour of HSPC but no difference in the cost of emergency room visit.

Four studies with full economic analysis were inconclusive on the cost‐effectiveness of HSPC.

2103
(13 RCTs)

⊕⊝⊝⊝
VERY LOWa,d

*The risk in the intervention group (and its 95% confidence interval) is based on the assumed risk in the comparison group and the relative effect of the intervention (and its 95% CI).

CI: Confidence interval; OR: Odds ratio; RCT: randomised controlled trial; RR: Risk Ratio; SMD: standardised mean difference

i. Assessed with the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ‐C30), Functional Assessment of Cancer Therapy ‐ Bone Marrow Transplant (FACT‐BMT), Functional Assessment of Cancer Therapy ‐ General Measure (FACT‐G), Functional Assessment of Cancer Therapy – Lung scale (FACT‐L), Functional Assessment of Chronic Illness therapy for Palliative Care (FACIT‐Pal), Functional Assessment of Chronic Illness Therapy ‐ Spiritual Well‐being Scale (FACIT‐Sp), McGill Quality of Life Questionnaire (McGill QoL questionnaire) and Minnesota Living with Heart Failure Questionnaire (MLHF questionnaire).

ii. Assessed with the Edmonton Symptom Assessment Scale (ESAS) or a modified form of it, severity subscale of the Memorial Symptom Assessment Scale (MSAS), symptom impact subscale of the Quality of Life at End of life (QUAL‐E), Rotterdam Symptom Checklist (RSC ‐ Physical Symptoms Score) and lung cancer subscale of the FACT‐L.

iii. Assessed with 16‐item Family Satisfaction with Care ‐ Patient Version (FAMCARE‐P16) and Modified City of Hope Patient Questionnaires ‐ Place of Care Environment Scale (MCOHPQ ‐ Place of Care Environment Scale).

iv. Assessed with pain item of EORTC QLQ‐C30 and Brief Pain Inventory (BPI).

v. Assessed with Montgomery‐Borgatta Caregiver Burden Scale and Zarit Burden Inventory

GRADE Working Group grades of evidence
High quality: We are very confident that the true effect lies close to that of the estimate of the effect
Moderate quality: We are moderately confident in the effect estimate: The true effect is likely to be close to the estimate of the effect, but there is a possibility that it is substantially different
Low quality: Our confidence in the effect estimate is limited: The true effect may be substantially different from the estimate of the effect
Very low quality: We have very little confidence in the effect estimate: The true effect is likely to be substantially different from the estimate of effect

a We downgraded by 2 levels for very serious study limitations due to a high risk of bias in studies.

b We downgraded by 1 level due to inconsistency between our main meta‐analysis and sensitivity analyses.

c We downgraded by 1 level for imprecision due to the small number of participants.

d We downgraded by 1 level for inconsistency because the results were inconsistent across studies.

Figures and Tables -
Summary of findings 1. Hospital‐based specialist palliative care compared to usual care for adults with advanced illness and their caregivers/families
Table 1. Taxonomy of the components of hospital‐based specialist palliative care in studies that either included certified experts in palliative care or those described as palliative care clinicians

Author

Symptom control (e.g. assess symptoms, prescribing of medications)

Decision‐making (e.g. enquire about goals of care)

Future planning (e.g. advance care planning)

Coping and support (e.g. emotional and practical support)

Care co‐ordination (e.g. helping with co‐ordinating care)

Bajwah 2015

Yes

Yes

Yes

Yes

Yes

Bakitas 2009

Yes

Yes

Yes

Yes

Yes

Bakitas 2015

Yes

Yes

Yes

Yes

Yes

Bekelman 2018

Yes

Yes

No

Yes

Yes

Brannstrom 2014

Yes

Yes

No

Yes

Yes

Brumley 2007

Yes

Yes

Yes

Yes

Yes

Carson 2016

No

Yes

No

Yes

No

Edmonds 2010

Yes

Yes

Yes

Yes

Yes

El‐Jawahri 2016

Yes

No

No

Yes

No

Farquhar 2014

Yes

Yes

Yes

Yes

No

Farquhar 2016

Yes

Yes

Yes

Yes

No

Franciosi 2019

Yes

Yes

No

Yes

Yes

Gade 2008

Yes

Yes

Yes

Yes

No

Higginson 2009

Yes

No

Yes

Yes

Yes

Higginson 2014

Yes

Yes

Yes

Yes

Yes

Janssens 2019

Yes

Yes

Yes

Yes

Yes

Kane 1984

Yes

No

Yes

Yes

No

Lowther 2015

Yes

Yes

Yes

Yes

No

Ma 2019

Yes

Yes

No

Yes

Yes

McCorkle 2015

Yes

Yes

No

Yes

Yes

McWhinney 1994

Unclear

Unclear

Unclear

Yes

Unclear

Nottelmann 2018

Yes

Yes

Yes

Yes

Yes

Rodin 2019

Yes

No

No

Yes

No

Rogers 2017

Yes

Yes

Yes

Yes

Yes

Sidebottom 2015

Yes

Yes

Yes

Yes

Yes

Solari 2018

Unclear

Unclear

Unclear

Yes

Unclear

Tattersall 2014

Yes

No

No

Yes

No

Temel 2010

Yes

Yes

No

Yes

Yes

Temel 2017

Yes

Yes

No

Yes

Yes

Vanbutsele 2018

Yes

Yes

No

Yes

Yes

Wallen 2012

Yes

No

No

Yes

No

Figures and Tables -
Table 1. Taxonomy of the components of hospital‐based specialist palliative care in studies that either included certified experts in palliative care or those described as palliative care clinicians
Table 2. Taxonomy of the components of hospital‐based specialist palliative care in studies that were unclear about training in palliative care

Author

Symptom control (e.g. assess symptoms, prescribing of medications)

Decision‐making (e.g. enquire about goals of care)

Future planning (e.g. advance care planning)

Coping and support (e.g. emotional and practical support)

Care co‐ordination (e.g. helping with co‐ordinating care)

Ahronheim 2000

Yes

No

Yes

Yes

No

Cheung 2010

Unclear

Unclear

Unclear

Unclear

Unclear

Groenvold 2017

Unclear

Unclear

Unclear

Unclear

Unclear

Grudzen 2016

Yes

Yes

Yes

Yes

No

Hopp 2016

Yes

Yes

Yes

Yes

No

Jingfen 2017

Yes

Yes

No

Yes

No

McCaffrey 2013

Unclear

Unclear

Unclear

Unclear

Yes

Mendoza‐Galindo 2018 (abstract only)

Yes

No

No

Yes

No

O'Riordan 2019

Yes

No

Yes

Yes

No

Ozcelik 2014

Yes

No

Yes

Yes

No

Woo 2019

Yes

No

No

Yes

No

Figures and Tables -
Table 2. Taxonomy of the components of hospital‐based specialist palliative care in studies that were unclear about training in palliative care
Table 3. Health‐related quality of life scales and dimensions covered

Studies, primary endpoint (PEP), disease group

Scales used

Dimensions covered in scales

Bajwah 2015

PEP: 4 weeks

Advanced fibrotic lung disease

KBILD (used in meta‐analysis)

SGRQ

KBILD is a 15‐item questionnaire consisting of three domains (breathlessness and activities, chest symptoms and psychological) ‐ secondary outcome

SGRQ is a 50‐item instrument designed to measure impact on overall health, daily life, and perceived well‐being in patients with obstructive airways disease. Part 1 has a symptoms component (frequency and severity) with a 1, 3 or 12 month recall (several scales); Part 2 has an activities component looking at activities that cause or are limited by breathlessness and an impact component looking at social functioning, psychological disturbances resulting from airways disease and referring to current state as the recall (dichotomous (true/false) except last question (4‐point Likert scale) – secondary outcome

Bakitas 2009

PEP: 13 months

Cancer

FACIT‐Pal

Measures physical, emotional, social, and functional well‐being in addition to concerns relevant to persons with life‐threatening illness (e.g. feeling peaceful, reconciling with others) – primary outcome

Bakitas 2015

PEP: 3 months

Cancer

FACIT‐Pal (used in meta‐analysis)

Treatment Outcome Index

Measures physical, emotional, social, and functional well‐being and additional concern subscales – study did not specify whether primary or secondary outcome

TOI, composed of FACIT‐Pal physical, functional, and additional concern subscales

Bekelman 2018

PEP: 6 months

Heart failure

KCCQ

KCCQ is a valid, reliable measure of heart failure–specific health status that is responsive to change. No further details provided in the study

Brannstrom 2014

PEP: 6 months

Heart failure

EQ‐5D (used in meta‐analysis)

KCCQ

A generic, single index that defines health in the five dimensions of mobility, self‐care, usual activities, pain/discomfort, and anxiety/depression ‐ did not specify primary or secondary outcomes

Full data not shown in study

Edmonds 2010

PEP: 12 weeks

Multiple sclerosis

MSIS

Multiple Sclerosis Impact Scale (MSIS) is a 29‐item measure of disease impact. It has two subscales: physical and psychological subscales.

El‐Jawahri 2016

PEP: 2 weeks

Cancer

FACT‐BMT

The 47‐item Functional Assessment of Cancer Therapy–Bone Marrow Transplant which includes subscales assessing physical, functional, emotional, social well‐being, and bone marrow transplant–specific concerns during the past week, was used to assess patients’ QoL – primary outcome

Franciosi 2019

PEP: 12 weeks

Cancer

FACT‐G

Functional Assessment of Cancer Therapy‐General (FACT‐G) scale. It is a 27‐item internationally validated questionnaire divided into four primary HRQoL domains: physical well‐being, social/family well‐being, emotional well‐being, and functional well‐being. The total FACT‐G score is the sum of the 4 subscale scores.

Gade 2008

PEP: at hospital discharge

Mixed diseases comprising cancer and non‐cancer

MCOHPQ

MCOHPQ Physical Area scale, emotional/relationship area and spiritual area scales and MCOHPQ place of care environment scale. Physical Area scale addresses pain, fatigue, sleep changes, nausea, constipation, diarrhoea, dry mouth, change in appetite, and shortness of breath. Emotional support items included: anxiety, burden to family, support they received, isolation, opportunity to discuss illness and possible death, and treatment wishes/goals. Spiritual support included: the importance of participation in spiritual or religious experiences from the Spiritual Area scale, and two items developed by the investigators: ability to find meaning in one’s life, and support given by religion or spiritual belief.

MCOHPQ Place of Care Environment scale addressed experiences receiving pain management and symptom relief, psychological and social support, discharge planning, and end‐of‐life planning – primary outcome.

Grudzen 2016

PEP: 12 weeks

Cancer

FACT‐G

Functional Assessment of Cancer Therapy‐General Measure (not specified in study) – primary outcome

Higginson 2014

PEP: 6 weeks

Mixed diseases comprising cancer and non‐cancer

CRQ HROL (presented in meta‐analysis)

EQ‐5D

Measures breathlessness mastery, breathlessness, fatigue, and emotional function – secondary outcome

A generic, single index that defines health in the five dimensions of mobility, self‐care, usual activities, pain/discomfort, and anxiety/depression

Janssens 2019

PEP: 12 months

COPD

SF‐36

A generalised self‐assessment scale assessing different dimensions including vitality, mental health, general health, physical functioning, role physical, role emotional, bodily pain, social functioning and health transition

Jingfen 2017

PEP: 3 months

Cancer

EORTC QLQ‐C30‐Chinese version

Not specified as primary or secondary outcome

McCorkle 2015

PEP: not stated but 3 months used in meta‐analysis

Cancer

FACT‐G (presented in meta‐analysis)

SF‐12 (not used in meta‐analysis because only its first item was used)

No information provided in study on dimensions covered by FACT‐G ‐ secondary outcome

Nottelmann 2018

PEP: 12 weeks

Cancer

EORTC QLQ‐C30

The EORTC QLQ‐C30 consists of 30 items in 15 scales. In the present study additional items measuring role functioning, cognitive functioning, social functioning, dyspnoea, pain, fatigue, insomnia, appetite loss, nausea/vomiting and constipation were added to the questionnaire to expand these scales to at least four items in each scale.

O'Riordan 2019

PEP: not stated but appeared to be 6 months. 6 months was used in meta‐analysis

Heart failure

MLHF questionnaire

MLHF questionnaire measures heart failure–specific health–related quality of life. No further information provided

Ozcelik 2014

PEP: on discharge

Cancer

EORTC QLQ‐C30

The scale consists of the 2 subscales 'functional' and ‘symptom'. The functional section is divided into 6 subsections: physical, role, cognitive, emotional, social, and global quality of life. The symptom section includes the following symptoms: fatigue, nausea and vomiting, pain, dyspnoea, sleep disorders, loss of appetite, constipation, diarrhoea, and financial impact – primary outcome

Rodin 2019

PEP: 12 weeks

Cancer

FACIT‐Sp

The scale covers physical, social/family, emotional, functional, and spiritual well‐being.

Rogers 2017

PEP: 6 months

Heart failure

FACIT‐Pal (presented in meta‐analysis)

KCCQ

Assesses quality of life in several domains, including physical well‐being, social/family well‐being, emotional well‐being, functional well‐being, and palliative care – primary outcome

The overall summary score is derived from the physical function, symptom, social function, and quality‐of‐life domains.

Sidebottom 2015

PEP: not stated but data presented at 3 months used in meta‐analysis

Heart failure

MLHF questionnaire

The MLHF Questionnaire was created to be representative of the ways HF and treatments can affect key physical, emotional, social, and mental dimensions of QoL. It assess how much a person’s HF has affected many aspects of their life during the prior month – primary outcome

Solari 2018

PEP: 6 months

SEIQoL‐DW questionnaire

Schedule for the Evaluation of Individual Quality of Life‐Direct Weighting (SEIQoL‐DW). The SEIQoL‐DW is administered in an interview in which respondents nominate the five areas of life that are most important in determining their QoL, and rate the satisfaction/functioning and weight/importance in each of these areas. The SEIQoL‐DW index can range from 0 to 100 (best).

Tattersall 2014

PEP: one year

Cancer

McGill QoL Questionnaire

Physical symptoms, psychological symptoms, outlook on life, and meaningful existence – primary outcome

Temel 2010

PEP: 12 weeks

Cancer

FACT‐L (presented in meta‐analysis)

LCS

TOI

Assesses multiple dimensions of the quality of life (physical, functional, emotional, and social well‐being) during the previous week. In addition, the lung cancer subscale (LCS) of the FACT‐L scale evaluates seven symptoms specific to lung cancer – primary outcome

Temel 2017

PEP: 12 weeks

Cancer

FACT‐G

Assesses four dimensions of QoL (physical, functional, emotional, and social well‐being) – primary outcome

Vanbutsele 2018

PEP: 12 weeks

Cancer

EORTC QLQ‐C30 (presented in meta‐analysis)

McGill QoL questionnaire

Global health status/quality of life scale of the European Organisation for Research and Treatment of Cancer Quality‐of‐Life Questionnaire Core 30 items (EORTC QLQ‐C30; version 3)

Single item scale and overall summary score of the McGill Quality of Life questionnaire (MQoL). The MQoL incorporates a single item scale of global quality of life and four subscales, measuring four relevant domains of quality of life (i.e. physical, psychological, existential/spiritual, and social).

Woo 2019

PEP: 4 weeks

Cancer

EORTC QLQ‐C30 (Korean version)

EORTC QLQ‐C30 (Korean version) assesses multiple dimensions of QoL (physical, functional, emotional and social well‐being) during the previous week.

COPD:
CRQ HROL:
EORTC QLQ‐C30:
EQ‐5D:
FACIT‐Pal: Functional Assessment of Chronic Illness Therapy for Palliative Care
FACIT‐Sp: Functional Assessment of Chronic Illness Therapy—Spiritual Well‐Being (FACIT‐Sp)
FACT‐BMT: Functional Assessment of cancer Therapy – Bone Marrow Transplant
FACT‐G: Functional Assessment of Cancer Therapy‐General Measure/Functional Assessment of Chronic Illness Therapy–General Measure
FACT‐L:
HF:
HRQoL:
KBILD: Kings Brief Interstitial Lung Disease
KCCQ: Kansas City Cardiomyopathy Questionnaire
LCS:
MCOHPQ: Modified City of Hope Patient Questionnaires
MLHF: Minnesota Living with Heart Failure Questionnaire
MQoL:
MSIS:
PEP:
QoL:
QUAL‐E: Quality of Life at the End of Life (QUAL‐E)
SEIQoL‐DW:
SF‐12:
SF‐36:
SGRQ: St Georges Respiratory Questionnaire
TOI:

Figures and Tables -
Table 3. Health‐related quality of life scales and dimensions covered
Table 4. Studies that reported on mortality/survival

Author

Results for Mortality/Survival

P value

Ahronheim 2000

Number of deaths in the sample

Intervention: 12 (25%)

Control: 12 (25%)

0.96

Bajwah 2015

Number of deaths in the sample

Intervention: 8 (32%)

Control: 13 (54%)

Not stated

Bakitas 2009

Number of deaths in the sample

Intervention: 112 (69.6%)

Control: 119 (73.9%)

Survival time (median, 95% CI)

Intervention: 14 months (10.6 to 18.4)

Control: 8.5 months (7 to 11.1)

Cox proportional hazards model estimate demonstrated a reduced relative risk of death (HR, 0.67 (95% CI: 0.496 to 0.906) P = .009) in the HSPC group during the first year of the study and a greater relative risk after one year, (HR, 1.56 (95% CI: 0.908 to 2.655)).

P for survival time = 0.14

Bakitas 2015

Number of deaths (authors stated that there were 109 deaths (52.7%)

Intervention: numbers not provided

Control: numbers not provided

Survival time (median)

Intervention: 18.3 months

Control: 11.8 months

Kaplan‐Meier curves illustrated a 15% difference in survival at 1 year (HSPC, 63% vs control, 48%; P = 0.038). However, for the overall log‐rank test, P = 0.18), suggesting a convergence in overall survival after 12 months.

Bekelman 2018

Number of deaths in the sample

Intervention: 10 (6.4%)

Control: 13 (8.3%)

0.52

Brannstrom 2014

Number of deaths in the sample

Intervention: 8 (22%)

Control: 4 (11.1%)

0.34

Brumley 2007

Number of deaths (authors highlighted 75% deaths among participants)

Intervention: numbers not provided

Control: numbers not provided

Survival time (mean (SD))

Intervention: 196 days (SD:164)

Control: 242 days (SD:200)

P = 0.03

However, results of the Kaplan‐Meier survival analysis did not show differences in survival time between study groups (P = 0.08).

Carson 2016

Survival time (median, IQR)

Intervention: 19 days (12 to 37)

Control: 23 days (12 to 39)

P for survival time = 0.51

90‐day survival (HR, 0.95 (95% CI: 0.65 to 1.38), P = 0.96). Post hoc adjustment for baseline activities of daily living and study site did not alter the outcome (HR,1.01 (95% CI; 0.69 to 1.47), P = 0.96)

Cheung 2010

Number of deaths in the sample

Intervention: 7 (70%)

Control: 9 (90%)

P = 0.58

Edmonds 2010

Number of deaths in the sample

Intervention: 1 (70%)

Control: 3 (11.5%)

P value not stated

El‐Jawahri 2016

Number of deaths in the sample

Intervention: 3 (3.7%)

Control: 0

P value not stated

Farquhar 2014

Number of deaths in the sample

Intervention: 2 (5.7%)

Control: 0

P value not stated

Farquhar 2016

Number of deaths in the sample

Intervention: 1 (2.3%)

Control: 1 (2.3%)

P value not stated

Franciosi 2019

Number of deaths in the sample

Intervention: 52 (37.4%)

Control: 30 (36.6%)

P value not stated

Gade 2008

Number of deaths in the sample

Intervention: 173 (63%)

Control: 132 (56%)

Survival time (median, IQR)

Intervention: 30 days (6 to 104)

Control: 36 days (13 to 106)

P (for difference in number of deaths) = 0.08

P (for difference in survival time) = 0.08

Groenvold 2017

Number of deaths in the sample

Intervention: 25 (27%)

Control: 22 (23%)

Survival time (median)

Intervention: 323 days

Control: 364 days

P (for difference in survival time) = 0.16, but in the adjusted analysis P = 0.39

Grudzen 2016

Number of deaths in the sample

Intervention: 41 (59.4%)

Control: 44 (65.7%)

Survival time (median, 95% CI)

Intervention: 289 days (128 to 453)

Control: 132 days (80 to 302)

The P value for difference in median survival was 0.20 (log‐rank test)

Higginson 2009

Number of deaths in the sample

Intervention: 1 (3.8%)

Control: 3 (11.5%)

P value not stated

Higginson 2014

Number of deaths in the sample

Intervention: 3 (5.7%)

Control: 13 (25%)

Survival time (median, range)

Intervention: 745 (338 to1075)

Control: 711 (345 to1045)

P (for survival rate) was 0.048. In subgroup analysis, this pattern was not recorded for patients with cancer (P = 0·97); but it became more marked for patients with diseases other than cancer (P = 0·01).

Hopp 2016

Number of deaths in the sample (denominator unclear)

Intervention: 11

Control: 8

P = 0.47

Janssens 2019

Number of deaths in the sample

Intervention: 4 (15.4%)

Control: 4 (17.4%)

Survival time (unclear if mean or median reported)

Intervention: 454 days (95% CI: 382 to 525)

Control: 425 days (95% CI: 339 to 509)

Survival did not differ between groups (log‐rank test, P = 0.913).

Kane 1984

One‐third of the sample died within 45 days after enrollment, the second third within 120 days but numbers were not provided for the intervention and control groups

Authors reported no difference in the survival patterns of HSPC and control patients

Lowther 2015

Number of deaths in the sample

Intervention: 3 (5%)

Control: 0

P value not stated

Ma 2019

Number of deaths in the sample

Intervention: 34 (35.1%)

Control: 37 (36.3%)

P = 0.87

McCaffrey 2013

Number of deaths in the sample

Intervention: 16 (69.6%)

Control: 5 (62.5%)

Increment (95% CI) reported as 7 (‐45.1 to 30.4)

McCorkle 2015

Number of deaths in the sample

Intervention: 7 (10.6%)

Control: 3 (3.8%)

P value not stated

McWhinney 1994

Authors reported that 36 (24.7%) patients died before one month but did not provide numbers in the intervention and control group.

O'Riordan 2019

Number of deaths in the sample

Intervention: 1 (4.5%)

Control: 1 (5.6%)

P value not stated

Rogers 2017

Number of deaths in the sample

Intervention: 23 (30.7%)

Control: 20 (26.7%)

P value not stated

Sidebottom 2015

Number of deaths in the sample

Intervention: 14 (12.1%)

Control: 5 (4.3%)

Results of the survival analysis found no association between study group assignment and death within 6 months after adjustment for age, gender, and marital status.

Solari 2018

Number of deaths in the sample

Intervention: 3 (3%)

Control: 0

P value not stated

Tattersall 2014

Number of deaths in the sample

Intervention: 39 (65%)

Control: 31 (51.7%)

Survival time (median, 95% CI)

Intervention: 7 months (5.2 to 9.8)

Control: 11.7 months (9.8 to 18.8)

P (log rank) = 0.014.

The estimated HR was 1.6 (95% CI: 1.1 to 2.3; P = 0.015). This estimate changed to 1.5 (95% CI 0.99 to 2.2; P = 0.06) when adjusted for the oncologist’s baseline estimate of likely survival, diagnosis, months since diagnosis, and gender.

Temel 2010

Number of deaths (authors stated 105 participants (70%) had died by the time of analysis)

Intervention: numbers not provided

Control: numbers not provided

Survival time (median, 95% CI)

Intervention: 11.6 (6.4 to 16.9) months

Control: 8.9 (6.3 to 11.4) months

Log‐rank P = 0.02

After adjustment for age, sex, and baseline Eastern Cooperative Oncology Group performance status, the group assignment remained a predictor of survival (HR for death in the standard care group, 1.70; 95% CI, 1.14 to 2.54; P = 0.01).

Temel 2017

Number of deaths in the sample

Intervention: 33 (18.9%)

Control: 41 (23.4%)

P value not stated

Vanbutsele 2018

Number of deaths (authors stated that 121 (65%) of participants had died by the end of the study)

Intervention: numbers not provided

Control: numbers not provided

Survival time (median, 95% CI)

Intervention: 312 days (190 to 434)

Control: 343 days (253 to 433)

P = 0.97

Woo 2019

Authors reported that there was no difference in survival between HSPC and usual care but did not present any data

CI:
HR:
HSPC:
IQR:
vs:

Figures and Tables -
Table 4. Studies that reported on mortality/survival
Table 5. Studies that reported on adverse events in patients and/or caregivers

Studies

Participants

Adverse effects in patients/caregivers

Bajwah 2015

Patients and caregivers

Authors reported no worsening of any outcome after receiving the intervention.

Bekelman 2018

Patients

There were no harmful adverse events attributed to the intervention.

Groenvold 2017

Patients

Authors did not observe any harmful effect of the intervention.

Higginson 2014

Patients (and caregivers if present)

Authors did not observe any harmful effect of the intervention.

Lowther 2015

Patients

Authors did not observe any harmful effect of the intervention.

Rodin 2019

Patients

Authors reported no adverse events during the study.

Solari 2018

Patients and caregivers

Authors reported 15 serious adverse events in 13 patients in the HSPC group and 7 in 7 patients in the control group. Serious adverse events reported included aspiration pneumonia, generalised anxiety, breathing difficulty, urine retention/infection, anarthria, contact dermatitis, dysphagia, vomiting, bladder catheter malfunctioning, fever, arrhythmia, necrotising fasciitis, traumatic wound, macrohaematuria, constipation, abdominalgia and bronchitis. Three patients in the HSPC group died but this was considered to be unrelated to the intervention.

Tattersall 2014

Patients

Authors reported that more patients in the HSPC group had poorer appetite compared to the control group (P = 0.04).

HSPC:

Figures and Tables -
Table 5. Studies that reported on adverse events in patients and/or caregivers
Table 6. Emergency department (ED) use

Study

Time horizon

Significance and direction

Details

Bakitas 2009

During study period

Wilcoxon rank sum test

P = 0.53

Intervention: 0.86 visits

Control: 0.63 visits

Note: not clear if the figures were means or medians

Bakitas 2015

Total use covering period before and after enrollment

Poisson generalised linear model

P = 0.32 for baseline (total sample of 207)

P = 0.21 for total use in 109 decedents

Intervention for baseline sample (days, 95% CI): 0.16 (0.1 to 0.25)

Control for baseline sample:

0.21 (0.15 to 0.31

Intervention (total use in 50 decedents):

0.14 (0.09 to 0.2)

Control (total use in 59 decedents):

0.19 (0.14 to 0.26)

Brumley 2007

During study period

Reduced ED use in intervention group

Cramer’s V 0.15; P = 0.01

linear regression adjusted for survival, age and severity of illness showed intervention reduced ED visits by 0.35 (P = 0.02)

Intervention: 20% had ED visits

Control: 33% had ED visits

Janssens 2019

Admissions to the emergency ward in the year before study enrollment

There was no difference in admissions to the emergency ward in the intervention group compared to the control group (Incidence rate ratio 1.27, 95% CI: 0.72 to 2.26, P = 0.384).

Number of admissions to emergency ward

Intervention: 33

Control: 23

During study period

Admission to the emergency ward was twice as often in the intervention group compared to the control group (incidence rate ratio 2.05, 95% CI: 1.11 to 3.94, P = 0.014). However, after the Benjamini and Hochberg correction for multiple testing, this difference was not significant.

Number of admissions to emergency ward

Intervention: 37

Control: 16

Ma 2019

During study period and post‐discharge

Patients in the intervention group had fewer ED visits compared to usual care (P = 0.0067)

% of ED visits:

Intervention: 1.3%

Control: 12.5%

P: 0.0067

Mendoza‐Galindo 2018 (abstract only)

Unclear

P = 0.074

Intervention: 39

Control: 50

Rogers 2017

During study period

P value not stated

Frequency of interactions occurring between patients and providers

Emergency department/urgent care:

Intervention, mean (SD): 0.4 (0.12)

Control, mean (SD): 0.5 (0.11)

Temel 2010

During study period

P value not stated

Any emergency department visit from enrollment to death:

Intervention: 53.1%

Control: 57.1%

P value not stated

Any emergency department visit within 30 days of death:

Intervention: 22.4%

Control: 30.4%

CI: confidence intervals
ED:
SD: standard deviation

Figures and Tables -
Table 6. Emergency department (ED) use
Table 7. Intensive care unit (ICU) use

Study

Time horizon

Significance and direction

Details

Bakitas 2009

During study period

Wilcoxon rank sum test

P > 0.99

Intervention: 0.06 days

Control: 0.06 days

Note: not clear if the figures were means or medians

Bakitas 2015

Total use covering period before and after enrollment

Poisson generalised linear model

P = 0.10 for baseline (total sample of 207)

P = 0.49 for total use in 109 decedents

Intervention for baseline sample (days, 95% CI): 0.52 (0.28 to 0.95)

Control for baseline sample:

0.22 (0.1 to 0.5)

Intervention (total use in 50 decedents):

0.1 (0.04 to 0.24)

Control (total use in 59 decedents):

0.15 (0.07 to 0.3)

Carson 2016

Interviewed surrogate decision‐makers immediately

after the second support and information team meeting

for the intervention group and 10 days after randomisation for

the control group, unless the patient had died. All surrogate

decision‐makers were interviewed again by telephone for

follow‐up beginning 90 days after randomisation.

Differences between groups for other patient outcomes were analysed based on t tests, nonparametric tests, χ2 tests (including the Fisher exact test), or log‐rank tests as appropriate.

For total ICU days, P = 0.51

P value for after randomisation, P = 0.72

ICU days

Total:

Intervention, median (IQR): 19 (15 to 26)

Control, median (IQR): 20 (15 to 30)

After randomisation:

Intervention, median (IQR): 9 (6 to 15)

Control, median (IQR): 10 (5 to 17)

Cheung 2010

Enrollment to ICU discharge

Fisher’s exact test and the Mann‐Whitney test

P = 0.97

Intervention: median (IQR) ICU length of stay: 3 (7) days

Control: median (IQR) ICU length of stay: 5 (8) days

Grudzen 2016

During study period

Index‐admission

Fisher exact test P > 0.99

Up to 180 days

Fisher exact test P > 0.99

Hospital days at 180 days

Index‐admission:

Since only 1 participant had more than 1 ICU admission, the authors treated the ICU admission as a binary outcome. During the index‐admission, there was no difference between the 2 groups. (Fisher exact test P > 0.99)

Up to 180 days:

There was no difference between the 2 groups (Fisher exact test, P > 0.99).

Gade 2008

6 months post‐index hospitalisation

P = 0.04

Continuous measures for intervention and usual care patients were compared using t tests for normally distributed measures and Wilcoxon two‐sample tests for measures with skewed distributions.

ICU admissions, median n:

Intervention: 12

Control: 21

Janssens 2019

Admissions to ICU for respiratory failure in the year before study enrollment

There was no difference in ICU admissions for respiratory failure in the intervention group compared to the control group (Incidence rate ratio 0.88, 95% CI: 0.26 to 2.96, P = 0.82).

Number of ICU admissions for respiratory failure in the year before inclusion:

Intervention: 7

Control: 7

During study period

There was no difference in ICU admissions for respiratory failure in the intervention group compared to the control group (Incidence rate ratio 4.42, 95% CI: 0.49 to 20.92, P = 0.16).

Number of ICU admissions for respiratory failure during the study period:

Intervention: 5

Control: 1

Kane 1984

During study period

P value not stated

Mean number of ICU days per patient:

Intervention, mean per patient: 0.2

Control, mean per patient: 0.3

Ma 2019

During study period

No difference in ICU duration between intervention and control group (P = 0.38)

ICU duration in days, median (IQR):

Intervention: 5 (3 ‐ 8)

Control: 5.5 (3 ‐ 10)

P: 0.38

CI: confidence intervals
ICU:
IQR: interquartile range

Figures and Tables -
Table 7. Intensive care unit (ICU) use
Table 8. Resource use in intensive care unit (ICU)

Study

Time horizon

Significance and direction

Details

Carson 2016

Interviewed surrogate decision‐makers immediately after the second support and information team meeting for the intervention group and 10 days after randomisation for the control group, unless the patient had died. All surrogate decision‐makers were interviewed again by telephone for follow‐up beginning 90 days after randomisation.

Differences between groups for other patient outcomes were analysed based on t tests, nonparametric tests, χ2 tests (including the Fisher exact test), or log‐rank tests as appropriate.

Mechanical ventilation, P = 0.41

Dialysis, P = 0.64

Nutrition, P = 0.60

Vasopressors, P = 0.86

Limitations of ICU treatment

Mechanical ventilation:

Intervention, median (IQR): 40 (31)

Control, median (IQR): 33 (26)

Dialysis:

Intervention, median (IQR): 13 (10)

Control, median (IQR): 15 (12)

Nutrition:

Intervention, median (IQR): 18 (14)

Control, median (IQR): 21 (17)

Vasopressors:

Intervention, median (IQR): 18 (14)

Control, median (IQR): 19 (15)

Ma 2019

During study period

The following were lower in the intervention group compared to the control group: tracheostomy (P = 0.035) and days on mechanical ventilation (P = 0.042).

% of patients using mechanical ventilation:

Intervention: 53.6%

Control: 56.9%

P: 0.64

Haemodialysis:

Intervention: 15.5%

Control: 23.5%

P: 0.15

Vasopressors:

Intervention: 48.5%

Control: 50%

P: 0.83

Tracheostomy:

Intervention: 1%

Control: 7.8%

P: 0.035

Cardiopulmonary resuscitation:

Intervention: 5.2%

Control: 6.9%

P: 0.61

Number of days on mechanical ventilation, median (IQR):

Intervention: 4 (3 ‐ 7)

Control: 6 (3 ‐ 13)

P: 0.042

Number of days on vasopressors, median (IQR):

Intervention: 3 (1 ‐ 6)

Control: 3 (2 ‐ 6)

P: 0.91

ICU:
IQR: Interquartile Range

Figures and Tables -
Table 8. Resource use in intensive care unit (ICU)
Table 9. Hospital admission

Study

Time horizon

Significance and direction

Details

Ahronheim 2000

During study period

P = 0.92

Mean number of total admissions

Intervention: 1.94

Control: 1.90

Bekelman 2018

During study period

P = 0.61

Number of hospitalisations

Intervention:

18 patients had 1 hospitalisation

9 patients had 2 or more hospitalisations

Control:

30 patients had 1 hospitalisation

6 patients had 2 or more hospitalisations

Brannstrom 2014

During study period

P = 0.009

Number of hospitalisations, mean (SD)

Intervention: 0.42 ± 0.60

Control: 1.47 ± 1.81

Total number of hospitalisations:

Intervention: 15

Control: 53

Brumley 2007

During study period

Reduced hospitalisation in intervention group

Cramer’s V 0.23; P < 0.001

Intervention: 36% were admitted

Control: 59% were admitted

Farquhar 2014

During study period

P value not stated

Inpatient:

Intervention, n (%), mean (SD) contacts: 2 (7%), 3.0 (2.8)

Control, n (%), mean (SD) contacts: 3 (12%), 6.3 (6.8)

Farquhar 2016

During study period

P value not stated

Inpatient:

Intervention, n (%), mean (SD) contacts: 6 (15%), 11.5 (8.3)

Control, n (%), mean (SD) contacts: 4 (11%), 6.0 (3.4)

Janssens 2019

Hospital admissions for respiratory failure in the year before study enrollment

There was no difference in hospital admissions for respiratory failure in the intervention group compared to the control group (incidence rate ratio 1.18, 95% CI: 0.61 to 2.31, P = 0.60).

Number of hospital admissions for respiratory failure in the year before inclusion:

Intervention: 24

Control: 18

During study period

Hospital admission for respiratory failure was almost twice as often in the intervention group compared to the control group (incidence rate ratio 1.87, 95% CI: 1.04 to 3.48, P = 0.026). However, after the Benjamini and Hochberg correction for multiple testing, this difference was not significant.

Number of hospital admissions for respiratory failure during study period:

Intervention: 38

Control: 18

Hospital admissions for respiratory failure in the year before study enrollment

There was no difference in hospital admissions for respiratory failure in the intervention group compared to the control group (incidence rate ratio 1.18, 95% CI: 0.36 to 4.12, P = 0.77).

Other hospitalisations in the year before inclusion:

Intervention: 8

Control: 6

During study period

There was no difference in hospital admissions for respiratory failure in the intervention group compared to the control group (incidence rate ratio 1.01, 95% CI: 0.32 to 3.28, P = 0.99).

Other hospitalisations during study period:

Intervention: 8

Control: 7

Ma 2019

During study period and post‐discharge

Patients in the intervention group had fewer hospital readmissions compared to usual care (P = 0.024)

% of hospital readmissions:

Intervention: 17.3%

Control: 33.3%

P: 0.024

Mendoza‐Galindo 2018 (abstract only)

Unclear

There was no difference in number of hospitalisations. P value not given

Intervention: 48%

Control: 51%

Rogers 2017

During study period

During the 6‐month follow‐up, 30% of patients were hospitalised for HF. No differences were seen between the 2 treatment groups in this clinical endpoints through the 6‐month follow‐up point. For hospitalisation for non‐heart failure/cardiovascular and hospitalisation for non‐cardiovascular, P value was not stated

Hospitalisation for HF:

Intervention: 30.7%

Control: 29.3%

Hospitalisation for non‐heart failure/cardiovascular:

Intervention: 16%

Control: 13%

Hospitalisation for non‐cardiovascular:

Intervention: 10.7%

Control: 24%

Sidebottom 2015

Inpatient readmission for any cause within 30 days

Survival analysis using proportional hazards regression

P = 0.50

There was no association between study group assignment and 30‐day inpatient readmission (adjusting for age, gender, and marital status).

Temel 2010

During study period

P value not stated

Any admission from enrollment to death:

Intervention: 73.5%

Control: 76.8%

P value not stated

Any admission within 30 days of death:

Intervention: 36.7%

Control: 53.6%

CI:
HF:
n: number
SD: standard deviation

Figures and Tables -
Table 9. Hospital admission
Table 10. Length of hospital admissions

Study

Time horizon

Significance and direction

Details

Ahronheim 2000

During study period

Student’s t‐test was used

P = 0.46

Intervention (mean (range)): 8.8 (1 ‐ 93)

Control (mean (range)): 9.7 (1 ‐ 63)

Bakitas 2009

During the study

Wilcoxon rank sum test

P = 0.14

Number of hospital days (unclear if mean or median reported)

Intervention: 6.6 days

Control: 6.5 days

Bakitas 2015

Total use covering period before and after enrollment

Poisson generalised linear model

P = 0.03 for baseline (total sample of 207)

P = 0.26 for total use in 109 decedents

Intervention for baseline sample (days, 95% CI): 0.69 (0.4 to 1.18)

Control for baseline sample:

1.39 (0.97 to 1.97)

Intervention (total use in 50 decedents):

0.95 (0.61 to 1.46)

Control (total use in 59 decedents):

1.3 (0.91 to 1.86)

Brannstrom 2014

During the study period

P value for total hospital days = 0.011.

The number of days spent in hospital was also significantly lower in the intervention group at the Departments of Medicine‐Geriatrics (100, range 1–45 vs. 242, range 2–46 days) and Surgery (0 vs. 56, range 2–21 days). Days in other departments did not differ significantly.

Total hospital days, mean (SD)

Intervention: 2.9 (8.3)

Control: 8.5 (12.4)

Days in Department of Medicine‐Geriatrics:

Intervention: 100 (range 1 ‐ 45)

Control: 242 (range 2 ‐ 46)

Days in Department of Surgery:

Intervention: 0

Control: 56

Days in other departments:

Intervention: 3 (range 1 ‐ 2)

Control: 7 (1 ‐ 6)

Brumley 2007

During the study

Fewer hospital days in intervention group. Linear regression adjusted for survival, age and severity of illness showed intervention reduced hospital days by 4.36 (P < 0.001)

No descriptive data provided

Carson 2016

Interviewed surrogate decision‐makers immediately after the second support and information team meeting for the intervention group and 10 days after randomisation for the control group, unless the patient had died. All surrogate decision‐makers were interviewed again by telephone for follow‐up beginning 90 days after randomisation.

Differences in the number of hospital days were analysed using nonparametric methods.

P value for total hospital days, P = 0.78

P value for deceased patients, P = 0.60

P value for after randomisation, P = 0.51

Hospital days

Total hospital days:

Intervention, median (IQR): 35 (23 to 52)

Control, median (IQR): 36 (23 to 54)

For deceased patients:

Intervention (49 deaths), median (IQR): 25 (18 to 36)

Control (51 deaths), median (IQR): 24 (14 to 39)

After randomisation:

Intervention, median (IQR): 19 (12 to 37)

Control, median (IQR): 23 (12 to 39)

Cheung 2010

During study period

Fisher’s exact test and the Mann‐Whitney test

P = 0.44

Intervention: median (IQR) hospital length of stay: 5 (8) days

Control: median (IQR) hospital length of stay: 11 (27) days

El‐Jawahri 2016

During study period

P value not stated

Duration of HCT hospitalisation, median (range):

Intervention: 20 (12 – 102) days

Control: 21 (13 – 40) days

Gade 2008

6 months post‐index hospitalisation

P value for admission to study enrollment (days), P = 0.36

P value for study enrollment to discharge or death in the hospital (days), P = 0.10

P‐value for index hospital length of stay (days), P = 0.57

Continuous measures for intervention and usual care patients were compared using t tests for normally distributed measures and Wilcoxon two‐sample tests for measures with skewed distributions.

Admission to study enrollment (days), median (IQR):

Intervention: 3 (2, 7)

Control: 4 (2, 7)

Study enrollment to discharge or death in the hospital (days), median (IQR):

Intervention: 3 (1, 6)

Control: 2 (1, 5)

Index hospital length of stay (days), median (IQR):

Intervention: 7 (4, 12)

Control: 7 (4, 12)

Grudzen 2016

During study period

Index‐admission

Wilcoxon test

P = 0.67

Up to 180 days

Wilcoxon test P = 0.14

Hospital days at 180 days

Index‐admission:

The authors found no difference in hospital days between the intervention and usual care groups during the index‐admission (Wilcoxon test P = 0.67).

Up to 180 days:

The intervention group had slightly more hospital days at 180 days than the usual care group (Wilcoxon test P = 0.14).

Higginson 2009

12 weeks following enrollment

Authors stated increased institutional days in control group but P value was not stated.

“The control care patients were more likely to be (...) admitted to or seen in hospital”.

Intervention: 4/26 (17%) were institutionalised for mean 19.0 days (SD 21.6)

Control: 6/28 (29%) were institutionalised for mean 30.7 days (SD 32.1)

Higginson 2014

Three months before baseline interview

P value not stated

Hospital inpatient days

Intervention, mean (SD): 4.5 (6.8)

Control, mean (SD): 4.6 (7.6)

Kane 1984

During study period

P value for general medical inpatient days, P < 0.05

P value for intermediate care inpatient days P < 0.05

Total inpatient days:

Intervention, mean per patient: 51

Control, mean per patient: 47.5

General medical:

Intervention, mean per patient: 13.2

Control, mean per patient: 20.7

Intermediate care:

Intervention, mean per patient: 8.3

Control, mean per patient: 26.5

Ma 2019

During study period

No difference in hospital duration between intervention and control group (P = 0.43)

Hospital duration in days, median (IQR)

Intervention: 10 (6 ‐ 15)

Control: 11 (6 ‐ 19)

P: 0.43

Mendoza‐Galindo 2018 (abstract only)

Unclear

P = 0.808

Intervention: 78 days

Control: 90 days

Ozcelik 2014

During study period

P = 0.07

Intervention, mean (SD): 9.4 (6.27) days

Control, mean (SD): 13.9 (11.5) days

Temel 2010

During study period

P value not stated

Median inpatient days (range) from enrollment to death:

Intervention: 5 (0 – 50)

Control: 7 (0 – 45)

IQR: interquartile range
SD: standard deviation

Figures and Tables -
Table 10. Length of hospital admissions
Table 11. Palliative care visits during hospitalisation

Study

Time horizon

Significance and direction

Details

El‐Jawahri 2016

During study period

P value not stated

Palliative care visits, median (range):

All intervention patients had at least 2 palliative care visits during the first 2 weeks of their hospitalisation (median number of visits, 4; range, 2‐7). Intervention participants had at least 4 palliative care visits during their entire hospitalisation (median number of visits, 8; range, 4‐40). Two control patients received a palliative care consultation. A total of 41.8% (146/349) of palliative care visits occurred while a family member was present.

Tattersall 2014

During study period

P = 0.37

Palliative care contact during the last acute hospital admission:

Intervention: 42 patients (86%)

Control: 29 patients (78%)

Figures and Tables -
Table 11. Palliative care visits during hospitalisation
Table 12. Outpatient clinic visits

Study

Time horizon

Significance and direction

Details

Brannstrom 2014

During study period

P value for physician visit, P = 0.000

P value for physician, phone calls and prescriptions, P = 0.012

P value for nurse visits, P = 0.003

P value for nurse visits, phone calls and prescriptions P = 0.003

Hospital outpatient clinic

Physician visit, n, median (range):

Intervention: 27, 1 (4 – 30)

Control: 133, 3 (2 ‐11)

Physician, phone calls and prescriptions, n, median (range):

Intervention: 42, 3 (0 – 8)

Control: 86, 3 (0 ‐10)

Nurse visits, n, median (range):

Intervention: 4, 1 (0 – 4)

Control: 60, 2 (0 ‐27)

Nurse, phone calls and prescriptions, n, median (range):

Intervention: 8, 1 (0 – 4)

Control: 44, 2 (0 ‐ 8)

Groenvold 2017

During study period

P values not stated

Contact with the HSPC team, (numbers):

Intervention: 138 patients had at least one face‐to‐face contact

Control: 13 patients had at least one face‐to‐face contact

Higginson 2009

12 weeks following enrollment

Hospital specialist visits differences and P value not stated

Hospital specialist visits:

Intervention: 8 patients (35%) received; mean 1.0 contacts (SD 0.0)

Control: 16 patients (76%) received; mean 1.3 contacts (SD 0.7)

Rogers 2017

During study period

P value not stated

Frequency of interactions occurring between patients and providers

Total number of clinic encounter records:

Intervention, mean (SD): 21.9 (1.99)

Control, mean (SD): 20.8 (1.92)

Cardiology:

Intervention, mean (SD): 2.3 (0.55)

Control, mean (SD): 3.2 (1.0)

Rehabilitation clinic:

Intervention, mean (SD): 1.4 (0.68)

Control, mean (SD): 0.9 (0.48)

Tattersall 2014

During study period

P values not stated

Contact with palliative care physician consultant:

Intervention: 51 patients (85%)

Control: 8 patients (13.3%)

Contact with palliative care physician in the last month of life:

Intervention: 16 patients (26.7%)

Control: 6 patients (10%)

Temel 2010

During study period

P values not stated

PC visits:

All the patients assigned to early palliative care, except for one patient who died within 2 weeks after enrollment, had at least one visit with the palliative care service by the 12th week. The average number of visits in the palliative care group was 4 (range, 0 to 8). Ten patients who received standard care (14%) had a palliative care consultation in the first 12 weeks of the study, primarily to address the management of symptoms, with seven patients having one visit and three having two visits.

Temel 2017

During study period

P value not stated

Mean number of palliative care visits:

Intervention, mean (range): 6.54 (0 to 14)

Control, mean (range): 0.89 (0 to 7)

Number of palliative care visits split on lung and GI cancer:

The authors stated that “we explored characteristics between patients with lung and GI cancer and found no differences in baseline measures or in the number of PC visits among those patients who received intervention. However, the GI cancer cohort had a higher proportion of male patients and a greater number of hospitalisations (P = 0.038) from baseline to week 24 compared with the lung cancer cohort".

Vanbutsele 2018

During study period

P value not stated for some of the comparisons.

However, the authors reported a difference between intervention and control groups for number of consultations with a psychologist (P = 0.02)

Number of consultations from the palliative care team

nurse at 18 weeks:

Intervention, median (IQR): 3 (1 – 4). 82 patients (89%) had at least one consultation

Control, median (IQR): 17 patients (18%) had at least one consultation

PC physician at 18 weeks:

Intervention: 25 patients (27%)

Control: 1 patient (1%)

Nurses at 24 weeks:

Intervention, median (IQR): 3 (2 – 5). 55 patients (60%) had at least 3 consultations

Control, median (IQR): 12 patients (13%) had at least 3 consultations

PC physician at 24 weeks:

Intervention: 32 patients (35%) had at least one consultation

Control: 1 (1%) had one consultation

Number of consultations with a psychologist:

18 weeks:

Intervention: 34 patients (37%) had at least one consultation

Control: 21 patients (22%) had at least one consultation

24 weeks:

No difference was found between intervention and control groups.

Number of consultations with other professionals:

There were no differences between study groups in the number of consultations with a social care nurse (P = 0·87), dietician (P = 0·32), or specialist nurse (P = 0·28) between 18 weeks and baseline; or between 24 weeks and baseline with social care nurse (P = 0·07), dietician (P = 0·95), or specialist nurse (P = 0·99).

Woo 2019

During study period

Forwards from enrollment

Consultation with a psychiatrist:

The proportions that consulted a psychiatrist (12% vs 12%) were similar in the intervention and control groups.

HSPC: hospital‐based specialist palliative care
IQR: Interquartile range
PC: palliative care
SD: standard deviation

Figures and Tables -
Table 12. Outpatient clinic visits
Table 13. Community care

Study

Time horizon

Significance and direction

Details

Bakitas 2015

Total use covering period before and after enrollment

Poisson generalised linear model

P = 0.62

Hospice use:

Intervention, rate 95% CI: 0.68 (0.55 to 0.84)

Control, rate 95% CI: 0.63 (0.51 to 0.78)

Brannstrom 2014

During study period

Primary Healthcare Centre:

P‐value for physician, primary healthcare centre (PHC), P = 0.027

P value for physician, phone calls and prescriptions, P = 0.000

P‐value for nurse visits, PHC, P = 0.25

P value for nurse visits, phone calls and prescriptions P = 0.010

Home:

P‐value for physician visits, home, P not stated

P value for nurse visits, home, P = 0.032

Within the PREFER team there were 158 additional physician visits and 1031 nurse visits at the patient’s home, and 36 phone call and/or drug prescriptions by the physician and 225 phone calls and/or prescriptions by the nurses. Summarising all this, the most striking difference was found between nurse visits in the PREFER group and the usual care group (1075 vs. 230; P =0.000). On the other hand, phone calls and prescriptions by doctors were more common in the usual care group (108 vs. 231), while physician’s visits were somewhat similar (194 vs. 201).

Primary Healthcare Centre

Physician, primary healthcare centre (PHC), n, median (range):

Intervention: 9, 1 (0 – 3)

Control: 54, 2 (0 ‐ 8)

Physician, phone calls and prescriptions, n, median (range):

Intervention: 30, 1 (0 – 5)

Control: 145, 1 (1 ‐ 14)

Nurse visits, PHC, n, median (range):

Intervention: 29, 1 (0 – 12)

Control: 61, 2 (0 ‐ 14)

Nurse, phone calls and prescriptions, n, median (range):

Intervention: 59, 3 (0 – 9)

Control: 153, 4 (1 ‐ 21)

Home:

Physician visits, home, n, median (range):

Intervention: 0, 0 (0 – 0)

Control: 14, 2 (1 ‐ 5)

Nurse visits, home, n, median (range):

Intervention: 11, 2 (1 – 3)

Control: 109, 5 (1 ‐ 23)

Brumley 2007

During study period

Days in hospice care (1of 2 sites only)

t 0.52

P = 0.60

Days in hospice care (1 of 2 sites only):

descriptive data not provided

Farquhar 2014

During study period

P values not stated

Breathlessness intervention service:

Intervention, n (%), mean (SD) contacts: 27 (96%), 1.9 (2.0)

Control, n (%), mean (SD) contacts: 2 (8%), 1.5 (0.7)

P values not stated

GP:

Intervention, n (%), mean (SD) contacts: 10 (36%), 1.2 (0.6)

Control, n (%), mean (SD) contacts: 13 (50%), 1.3 (0.5)

Farquhar 2016

During study period

P values not stated

Breathlessness intervention service:

Intervention, n (%), mean (SD) contacts: 39 (95%), 2.1 (1.0)

Control, n (%), mean (SD) contacts: 2 (5%), 1.5 (0.7)

P values not stated

GP:

Intervention, n (%), mean (SD) contacts: 25 (61%), 1.8 (1.2)

Control, n (%), mean (SD) contacts: 24 (63%), 1.6 (0.7)

Gade 2008

6 months post‐index hospitalisation

P = 0.09

Continuous measures for intervention and control patients were compared using t tests for normally distributed measures and Wilcoxon two‐sample tests for measures with skewed distributions

Study enrollment to hospice admission (days), median (IQR):

Intervention: 2 (0, 23)

Control: 3 (0, 37)

P = 0.04

Continuous measures for intervention and control patients were compared using t tests for normally distributed measures and Wilcoxon two‐sample tests for measures with skewed distributions.

Hospice length of stay (days), median (IQR)

Intervention: 24 (7, 94)

Control: 12 (4, 48)

P = 0.5

Categorical measures were tested using 2 tests or Fisher’s exact test.

Patients admitted to hospice, n (%):

Intervention: 103 (37.1%)

Control: 96 (40.7%)

Grudzen 2016

During study period

Fisher’s exact test P = 0.85

Chi2 test P = 0.93

Hospice use at 180 days:

Intervention: 28%

Control: 25%

Higginson 2009

12 weeks following enrollment

General practice:

Authors stated less GP contact in intervention group but P values not stated

District/practice nurse:

P values not stated

MS nurse:

Authors stated there were no differences (P values not stated)

Social services:

P values not stated

Specialist home visit:

P values not stated

General practice:

Intervention: 8 (35%) received; M 3.8 contacts (SD 0.5)

Control: 11 (52%) received; M 3.4 contacts (SD 1.2)

“Control care patients were more likely to be in contact with general practitioners”

District/practice nurse:

Intervention: 20 (87%) received; M 12.3 contacts (SD 19.7)

Control: 13 (62%) received; M 31.9 contacts (SD 50.7)

MS nurse:

Intervention: 11 (48%) received; M 1.8 contacts (SD 1.8)

Control: 7 (33%) received; M 1.1 contacts (SD 0.2)

“Receipt of MS nurses was similar in the two groups”.

Social services:

Intervention: 10 (43%) received; M 6.4 contacts (SD 7.7)

Control: 8 (38%) received; M 4.1 contacts (SD 2.4)

Specialist home visit:

Intervention: 5 (22%) received; M 5.2 contacts (SD 4.5)

Control: 0 received

Note: authors stated that specialist home visits were most likely to be from the intervention home palliative care team.

Kane 1984

During study period

P value not stated

Days at home:

Intervention, mean per patient: 44.8

Control, mean per patient: 37.9

McCaffrey 2013

During study period

No difference as increment, mean (95% CI) = 1 (‐6.8, 8.6)

Days at home:

Intervention, mean (95% CI): 13.1 (8.5, 17.7)

Control, mean (95% CI): 12.1 (5.9, 18.4)

Rogers 2017

During study period

P values not stated

Frequency of interactions occurring between patients and providers

Primary care:

Intervention, mean (SD): 4.4 (0.93)

Control, mean (SD): 5.2 (0.82)

Sidebottom 2015

Hospice use within 6 months of study hospitalisation

Survival analysis using proportional hazards regression

P = 0.36

There was no significant association between study group assignment and hospice use within 6 months (adjusting for age, gender, and marital status).

Temel 2010

During study period

P = 0.09

Median duration of hospice care:

Intervention: 11 days

Control: 4 days

CI:
GP: General Practitioner
M: mean
MS: Multiple Sclerosis
n: number
PHC:
PREFER:
SD: standard deviation

Figures and Tables -
Table 13. Community care
Table 14. Informal care

Study

Time horizon

Significance and direction

Details

Farquhar 2014

During study period

P value not stated

Breathlessness intervention service:

Intervention, n (%), mean (SD) contacts: 22 (79%), 20.3 (20.8)

Control, n (%), mean (SD) contacts: 25 (96%), 23.4 (25.2)

Higginson 2009

12 weeks following enrollment

P value not stated

Care by informal caregiver:

Intervention: 15/23 (65%) received; Mean 152.5 contacts (SD 53.7)

Control: 16/21 (76%) received; Mean 151.1 contacts (SD 57.7)

n: number
SD: standard deviation

Figures and Tables -
Table 14. Informal care
Table 15. Medications and other resources

Study

Time horizon

Significance and direction

Details

Ahronheim 2000

During study period

Pearson chi2 test

P = 0.79

New feeding tube

Intervention: 22 (45.8%)

Control: 22 (43.1%)

Pearson chi2 test

P = 0.66

Total feeding tube

Intervention: 34 (70.8%)

Control: 34 (66.7%)

Pearson chi2 test

P = 0.44

Mechanical ventilation

Intervention: 2 (4.2%)

Control: 4 (7.8%)

Not calculated because expected frequencies < 5 in at least 2 cells

Tracheostomy

Intervention: 0

Control: 1

Not calculated because expected frequencies < 5 in at least 2 cells

CPR

Intervention: 0

Control: 3 (5.9%)

Pearson chi2 test

P = 0.16

Systemic antibiotics (unclear if mean or median presented)

Intervention: 73 (79.3)

Control: 69 (70.4)

Interventions during 190 admissions

Pearson chi2 test

P = 0.025

IV for entire admission (unclear if mean or median presented)

Intervention: 61 (66)

Control: 79 (81)

Pearson chi2 test

P = 0.30

Indwelling urinary catheter (unclear if mean or median presented)

Intervention: 41 (44.6)

Control: 51 (52)

Pearson chi2 test

P = 0.33

Mechanical restraints (unclear if mean or median presented)

Intervention: 13 (54.2)

Control: 11 (45.8)

Student’s t‐test

P = 0.14

Days with restraints (mean)

Intervention: 5.18

Control: 6.56

Pearson chi2 test

P = 0.089

Daily phlebotomy for at least 50% of admission (unclear if mean or median presented)

Intervention: 32 (34.8)

Control: 46 (46.9)

Pearson chi2 test

P = 0.461

Daily sc/im injection for at least 50% of admission (unclear if mean or median presented)

Intervention: 16 (17.4)

Control: 21 (21.6)

ns

Pearson chi2 test

P = 0.12

>1 complex non‐invasive test (unclear if mean or median presented)

Intervention: 10 (11)

Control: 4 (4)

ns

Pearson chi2 test

P = 0.215

>1 invasive test (unclear if mean or median presented)

Intervention: 5 (4.3)

Control: 2 (2)

Pearson chi2 test

P = 0.15

Number of fingersticks per day in patients receiving insulin (unclear if mean or median presented)

Intervention: 1.56

Control: 2.01

Decisions to forgo treatments

Not calculated because expected frequencies < 5 in at least 2 cells

Enteral feeds

Intervention: 3 (6.3%)

Control: 4 (7.8%)

Not calculated because expected frequencies < 5 in at least 2 cells

Mechanical ventilation

Intervention: 3 (6.3%)

Control: 0

Not calculated because expected frequencies < 5 in at least 2 cells

Intravenous lines

Intervention: 5 (10.4%)

Control: 1 (2%)

Not calculated because expected frequencies < 5 in at least 2 cells

Blood draws

Intervention: 4 (8.3%)

Control: 0

Not calculated because expected frequencies < 5 in at least 2 cells

Antibiotics

Intervention: 3 (6.3%)

Control: 0

Pearson chi2 test

P = 0.65

CPR in‐hospital (unclear if mean or median presented)

Intervention: 62 (67.4)

Control: 63 (64.3)

Pearson chi2 test

P = 0.10

CPR nonhospital (unclear if mean or median presented)

Intervention: 47 (51.1)

Control: 38 (38.8)

Bakitas 2009

During study period

P = 0.34

Referral to hospice care

Fisher exact test P = 0.75

Referral to palliative care

Intervention: 34/145 (23.4%)

Control: 39/134 (29.1%)

Referral to hospice care

Intervention: 6/161 (3.7%)

Control: 4/161 (2.5%)

Bakitas 2015

Total use covering period before and after enrollment

Poisson generalised linear model

P = 0.54

Chemotherapy in last 2 weeks of life

Intervention, rate (95% CI): 0.08 (0.03 to 0.2)

Control, rate (95% CI): 0.05 (0.02 to 0.15)

Brumley 2007

During study period

Referral to hospice care

(1of 2 sites only)

Chi2 P = 0.15

Days in hospice care (1of 2 sites only)

t 0.52

P = 0.60

Referral to hospice care

(1 of 2 sites only)

Intervention: 25%

Control: 36%

Days in hospice care (1 of 2 sites only)

descriptive data not provided

Carson 2016

Interviewed surrogate decision‐makers immediately after the second support and information team meeting for the intervention group and 10 days after randomisation for

the control group, unless the patient had died. All surrogate decision‐makers were interviewed again by telephone for follow‐up beginning 90 days after randomisation.

Total ventilator days, P = 0.59

After randomisation, P = 0.42

Ventilator days

Total

Intervention, median (IQR): 19 (15 to 31)

Control, median (IQR): 21 (14 to 35)

After randomisation

Intervention, median (IQR): 10 (5 to 20)

Control, median (IQR): 12 (5 to 27)

Interviewed surrogate decision‐makers immediately

after the second support and information team meeting

for the intervention group and 10 days after randomisation for

the control group, unless the patient had died. All surrogate

decision‐makers were interviewed again by telephone for

follow‐up beginning 90 days after randomisation.

P = 0.62

Hospital discharge disposition (81 patients discharged from the hospital in intervention group and 75 in control group).

Home

Intervention, median (IQR): 15 (19)

Control, median (IQR): 18 (24)

Home with paid assistance:

Intervention, median (IQR): 10 (12)

Control, median (IQR): 7 (9)

Hospice

Intervention, median (IQR): 3 (4)

Control, median (IQR): 4 (5)

Acute rehabilitation facility

Intervention, median (IQR): 22 (27)

Control, median (IQR): 15 (20)

Long‐term acute care hospital

Intervention, median (IQR): 12 (15)

Control, median (IQR): 12 (16)

Other acute care facility

Intervention, median (IQR): 0

Control, median (IQR): 1 (1)

Skilled nursing facility

Intervention, median (IQR): 19 (23)

Control, median (IQR): 16 (21)

Other

Intervention, median (IQR): 0

Control, median (IQR): 2 (3)

Farquhar 2014

During study period

P value not stated

Other hospital care

Intervention, n (%), mean (SD) contacts: 15 (54%), 1.5 (0.8)

Control, n (%), mean (SD) contacts: 14 (54%), 1.4 (0.6)

P value not stated

Nurse

Intervention, n (%), mean (SD) contacts: 11 (39%), 3.0 (3.8)

Control, n (%), mean (SD) contacts: 12 (46%), 1.8 (1.6)

P value not stated

Other health professionals

Intervention, n (%), mean (SD) contacts: 5 (18%), 1.2 (0.4)

Control, n (%), mean (SD) contacts: 3 (12%), 1.0 (0.0)

Social care

Intervention, n (%), mean (SD) contacts: 4 (14%), 4.3 (6.5)

Control, n (%), mean (SD) contacts: 3 (12%), 15.7 (22.9)

Farquhar 2016

During study period

P value not stated

Other hospital services

Intervention, n (%), mean (SD) contacts: 20 (49%), 1.7 (1.0)

Control, n (%), mean (SD) contacts: 19 (50%), 2.5 (3.5)

P value not stated

Nurse

Intervention, n (%), mean (SD) contacts: 21 (51%), 2.7 (3.3)

Control, n (%), mean (SD) contacts: 16 (42%), 2.5 (2.5)

P value not stated

Other health services

Intervention, n (%), mean (SD) contacts: 14 (34%), 1.5 (1.1)

Control, n (%), mean (SD) contacts: 4 (11%), 1.0 (0.0)

P value not stated

Social and other care

Intervention, n (%), mean (SD) contacts: 8 (20%), 5.4 (4.6)

Control, n (%), mean (SD) contacts: 9 (24%), 11.3 (22.8)

Groenvold 2017

During study period

P value not stated

Telephone contact with the HSPC team, n

Intervention: 116 patients had at least one telephone contact

Control: 9 patients had at least one telephone contact

Higginson 2009

12 weeks after enrollment

P value not stated

Palliative care nurse

Intervention: 9 (39%) received; M 3.0 (SD 1.5)

Control: 0 received

Other nurse

Intervention: 7 (30%) received; M 40.0 (SD 63.8)

Control: 7 (33%) received; M 95.0 (SD 79.6)

Specialist (ward)

Intervention: 5 (22%) received; M 1.0 (SD 0.0)

Control: 7 (33%) received; M 9.6 (SD 12.1)

Specialist (other)

Intervention: 4 (17%) received; M 1.1 (SD 0.3)

Control: 5 (24%) received; M 1.0 (SD 0.0)

Occupational therapist/physiotherapist

Intervention: 16 (70%) received; M 10.6 (SD 9.9)

Control: 14 (67%) received; M 22.5 (SD 47.7)

Dietitian/chiropodist

Intervention: 12 (52%) received; M 3.5 (SD 2.5)

Control: 13 (62%) received; M 2.6 (SD 1.3)

Day centre

Intervention: 5 (22%) received;M 20.2(SD 21.0)

Control: 5 (24%) received; M 20.4 (SD 15.9)

Respite care

Intervention: 2 (9%) received; M 9.5 (SD 0.7)

Control: 5 (24%) received; M 10.0 (SD 5.9)

Janssens 2019

During study period

P = 0.819

Use of antibiotics

The use of antibiotics (for exacerbations not leading to hospital admission) did not differ between groups during the observation period.

Kane 1984

During study period

Major surgical procedures P < 0.05

Major surgical procedures

Intervention, mean per patient: 0.09

Control, mean per patient: 0.01

Minor surgical procedures

Intervention, mean per patient: 0.42

Control, mean per patient: 0.30

Over 80% of both hospice and control patients had no radiation treatments. However, those few who did had as many as 48 treatments, hence the large number.

Radiation treatments

Intervention, mean per patient: 7.4

Control, mean per patient: 7.7

P = 0.03

Chemotherapy treatments

Intervention, mean per patient: 1.3

Control, mean per patient: 0.49

Markgren 2016 (linked to Brannstrom 2014)

During study period

Only the change in patients receiving full target doses of the ACEIs/angiotensin receptor blockers, BBs and MRAs were higher (P = 0.0009) in the intervention arm than in the control arm.

Prescribed medication use

In the intervention arm, the percentages of angiotensin converting enzyme inhibitors (ACEIs) and mineralocorticoid receptor antagonists (MRAs) increased at the end of the study from baseline, while loop diuretics decreased. Beta‐receptor blockers (BBs) decreased somewhat in both groups. The number of patients treated with MRAs differed the most between groups, and increased from 10 (28%) to 15 (48%) in the PREFER arm compared with 13 (35%) vs 13 (39%) in the control group. The change in patients receiving full target doses (+8 vs. +1) of the ACEIs/angiotensin receptor blockers, BBs and MRAs were higher (P = 0.0009) in the intervention arm than in the control arm.

O'Riordan 2019

During study period

CRT device, P = 0.3

ACE1/ARB device, P = 0.2

Diuretics, P = 0.2

Spironolactone/eplerenone, P = 0.9

Beta‐blockers, P = 0.4

Medications (prescription and over‐the‐counter) in the medication list of patients

Guideline‐driven HF therapies

CRT device

Intervention: 20%

Control: 35.7%

ACE1/ARB

Intervention: 60%

Control: 35.7%

Diuretics

Intervention: 86.7%

Control: 64.3%

Spironolactone/eplerenone

Intervention: 26.7%

Control: 28.6%

Beta‐blockers

Intervention: 66.7%

Control: 50%

Medications for other conditions

Cholesterol‐lowering medication

Intervention: 73.3%

Control: 50%

Anti‐anginal

Intervention: 20%

Control: 14.3%

Diabetes medication

Intervention: 13.3%

Control: 14.3%

Antidepressants

Intervention: 20%

Control: 28.6%

Pain medication (NSAIDS and opioids)

Intervention: 53.3%

Control: 21.4%

Anxiety medication

Intervention: 0

Control: 7.1%

Constipation

Intervention: 26.7%

Control: 28.6%

Rodin 2019

During study period

P value not stated

Referral to palliative care

Intervention: 22 (100%)

Control: 1 (5%)

Referral to social work

Intervention: 22 (100%)

Control: 20 (100%)

Referral to psychiatry

Intervention: 1 (4.5%)

Control: 1 (5%)

Rogers 2017

During study period

P value not stated

Frequency of interactions occurring between patients and providers

Total number of hospital encounter records

Intervention, mean (SD): 2.5 (0.45)

Control, mean (SD): 2.4 (0.35)

Telephone contact

Intervention, mean (SD): 12.6 (1.2)

Control, mean (SD): 10.6 (0.88)

Temel 2010

During study period

P = 0.05

Aggressive end‐of‐life care among 105 decedents (chemotherapy within 14 days before death, no hospice care, or admission to hospice 3 days or less before death)

Intervention: 54%

Control: 33%

Chemotherapy within 30 days of death

Intervention: 32.5%

Control: 42%

ACEI:
ARB:
BB:
CPR: Cardiopulmonary Resuscitation
CRT:
HF:IQR: interquartile range
M: mean
MRA:
n: number
ns:
NSAID:
PREFER:
sc/im: subcutaneous/Intramuscuslar
SD: standard deviation

Figures and Tables -
Table 15. Medications and other resources
Table 16. Studies with qualitative components

Studies

Participants interviewed

Qualitative approach

Findings of the qualitative study

Findings of the quantitative component

Bajwah 2015 (patients with interstitial lung disease (ILD))

5 patients

5 carers

1 ILD consultant

1 ILD CNS

1 community matron

1 community palliative care nurse

1 GP

Semi‐structured interviews analysed using a constant comparison approach within framework analysis

Findings:

Patients and carers interviewed valued the case conference as they felt that it "laid everything on the table" and importantly addressed concerns and anxieties that had been playing on patients’ and carers’ minds. The qualitative work also identified lack of early referral to palliative care by community health professionals, despite requests from patients and carers, and some gatekeeping by hospital health professionals.

Themes from patients:

Support in the community

Crisis management

Palliative care, psychological support

Advance care planning

Themes from health professionals:

GPs ‐ collaboration of care and efficiency

Community palliative care clinical nurse specialist – individual care plans and practical problems addressed

ILD consultant – symptom control

ILD CNS – empowering health professionals

Primary outcome:

Symptom burden

Mean (SD) POS scores at 4 weeks were ‐5.7 (7.5) fast‐track vs ‐0.4 (8.0) control, (mean change difference between the two arms was ‐5.3 (95% CI ‐9.8 to ‐0.7) independent t test P = 0.02); effect size (95% CI) ‐0.7 (‐1.2 to ‐0.1).

Secondary outcomes:

The secondary outcomes of quality of life, anxiety and depression were superior in the fast‐track arm, and none were worse.

Bakitas 2013 (linked to Bakitas 2009)

(ENABLE II) (cancer patients)

35 oncology clinicians comprising 21 physicians and 14 nurse practitioner

Semi‐structured interviews analysed using thematic analysis

Findings:

Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Five themes comprised oncologists' views on the complementary role of palliative care: (1) “refer early and often,” (2) referral challenges: “palliative” equals “hospice”; “Heme patients are different,” (3) palliative care as consultants or co‐managers, (4) palliative care “shares the load,” and (5) ENABLE II facilitated palliative care integration. Self‐assessment of their practice with advanced cancer patients comprised four themes: (1) treating the whole patient, (2) focussing on quality versus quantity of life, (3) “some patients just want to fight,” and (4) helping with transitions; timing is everything.

Primary outcomes:

Quality of life:

The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of 4.6 (2) for quality of life (P = 0.02)

Symptom intensity

The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of ‐27.8 (15) for symptom intensity (P = 0.06)

Resource use:

Intensity of service did not differ between the 2 groups.

Secondary outcomes:

The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of ‐1.8 (0.81) for depressed mood (P = 0.02).

Maloney 2013 (linked to Bakitas 2009 )

(ENABLE II) (cancer patients)

53 patients (28 females included)

Semi‐structured interviews analysed using thematic analysis

Findings:

Participants' perceptions of intervention benefits were represented by four themes: enhanced problem‐solving skills, better coping, feeling empowered, and feeling supported or reassured.

Three themes related to trial participation: helping future patients and contributing to science, gaining insight through completion of questionnaires, and trial/intervention aspects to improve. Participants did not describe participation as burdensome but rather described some inconveniences or disappointments such as non‐attendance of meetings by other participants and disappointment at not being randomised to the intervention group.

Primary outcomes:

Quality of life:

The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of 4.6 (2) for quality of life (P = 0.02)

Symptom intensity

The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of ‐27.8 (15) for symptom intensity (P = 0.06)

Intensity of service did not differ between the 2 groups.

Secondary outcomes:

The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of ‐1.8 (0.81) for depressed mood (P = 0.02).

Talabani 2017 (linked to Brannstrom 2014) (heart failure (HF) patients)

12 patients from the intervention group (8 men included)

Semi‐structured interviews analysed using content analysis

Findings:

Two themes and a total of five categories were identified. The first theme was feeling secure and safe through receiving care at home with the categories: having access to readily available care at home, being followed up continuously and having trust in the team members' ability to help. The second theme was being acknowledged as both a person and a patient, with the following two categories: being met as a person, participating in decisions about one's care and receiving help for symptoms of both HF and comorbidities. The team also offered relatives support, which patients appreciated.

Outcomes:

Quality of life:

Between‐group analysis revealed that patients receiving HSPC had improved HRQoL compared with controls (57.6 ± 19.2 vs. 48.5 ± 24.4, age‐adjusted P = 0.05). Within‐group analysis revealed a 26% improvement in the

HSPC group for HRQoL (P = 0.046) compared with 3% (P = 0.82) in the control group.

Quality of life improved by 24% (P = 0.047).

Symptom burden:

Total symptom burden improved by 18% (P = 0.035)

Resource use:

Fifteen rehospitalisations (103 days) occurred in the HSPC group, compared with 53 (305 days) in the control group.

Farquhar 2014 (cancer patients)

20 patients (and associated carers)

Semi‐structured interviews analysed using framework analysis

Findings:

Breathlessness intervention service (BIS) reduced fear and worry, and increased confidence in managing breathlessness. Patients and carers consistently identified specific and repeatable aspects of the BIS model and interventions that helped. The multidisciplinary staff expertise was repeatedly noted. How interventions were delivered was important with a suggestion that the intervention was delivered through the provision of knowledge, with specialist expertise, which increased patients’ and carers’ confidence. BIS legitimised breathlessness and increased knowledge whilst making patients and carers feel ‘not alone’.

Primary outcome:

BIS reduced patient distress due to breathlessness (primary outcome: −1.29; 95% CI −2.57 to −0.005; P = 0.049) significantly more than the control group; 94% of respondents reported a positive impact (51/53)

Secondary outcomes:

Mean CRQ mastery scores improved only negligibly in the intervention arm and remained stable for controls. No differences were found between trial arms on other CRQ domains (dyspnoea, fatigue or emotional function). Mean anxiety scores (HADS) remained fairly stable (both arms). Mean depression scores decreased slightly in the intervention arm, increasing slightly for controls. There was little change in other patient or carer outcomes.

BIS had a 66% likelihood of better outcomes in terms of reduced distress due to breathlessness at lower health/social care costs than standard care (81% with informal care costs included).

Farquhar 2016 (Non‐cancer (mostly COPD)

20 patients (and associated carers)

Semi‐structured interviews analysed using framework analysis

Findings:

Patients with non‐malignant conditions and their carers described a range of impacts including reduced fear, anxiety, worry, and feelings of panic, as well as feeling more confident about breathlessness. They valued the multidisciplinary staff expertise (their knowledge and understanding of life with breathlessness), the characteristics of the BIS staff (their approachability and attentiveness) and their reassuring and positive approach, and the time BIS gave them to talk about breathlessness with an expert. They reported that being seen at home was especially helpful. The findings suggest that it was not only the provision of these interventions that was important, but also that how they were delivered was key to their impact: delivery of interventions through the provision of knowledge (why and how interventions work or specific guidance on how and when to use a particular intervention) increased patients’ and carers’ confidence.

Primary outcome:

There was no difference between groups in the primary outcome ("distress due to breathlessness"), when compared to standard care, of –0.24 (95 % CI: –1.30, 0.82).

Secondary outcomes:

Mean CRQ mastery scores improved slightly on both arms with greater improvement in the intervention arm. No differences were found between trial arms on other CRQ domains (dyspnoea, fatigue or emotional function). Mean patient anxiety scores decreased slightly for the intervention arm and increased slightly for the control arm and mean depression scores decreased slightly in the intervention arm and remained stable for controls; no between‐group difference was found. Mean anxiety scores for carers achieved a greater, 1.65‐point, reduction in the intervention arm compared with a 0.15‐point reduction for controls, adjusted difference of –1.22 (95 % CI: –2.84 to 0.40), P = 0.14. There was little change in other patient or carer secondary outcomes.

Carers of patients randomised to the intervention arm achieved a greater, 1.03‐point, reduction in their distress due to their patient’s breathlessness compared with a 0.2‐point increase for controls, adjusted difference of –0.42 (95 % CI: –1.86 to 1.02), P = 0.56. BIS resulted in extra mean costs of GBP799, reducing to GBP100 when outliers were excluded.

Hopp 2016 (patients with heart failure)

85 patients

Unclear although the authors stated that clinical records were qualitatively reviewed

Findings:

Patients expressed concerns about hospital palliative care as it might prevent them from receiving more aggressive treatment. Most patients did not engage with advanced care options.

Primary outcome:

There was no difference between groups in the primary outcome (election vs non‐election of measure of comfort‐oriented care) (difference 9.3%, 95% CI ‐11.8% to 30%; P = 0.12).

Veron 2018 (linked to Janssens 2019)

(COPD patients)

18 patients (44.4% females)

Semi‐structured interviews analysed using thematic content analysis

Findings:

Patients described poor recollection of the RCT and difficulties understanding the palliative care intervention. No major differences were observed between patients who received the specialised intervention and those who did not. Content analysis emphasised that although they experienced disabling symptoms, participants tended to attribute their limitations to problems other than COPD and some declared that they were not sick. Patients reported restrictions due to oxygen therapy, and the burden of becoming dependent on it. This dependence resulted in intense anxiety, leading participants to focus on the present only. A strong feeling of perceived helplessness emerged from the patients' interviews.

Primary outcomes:

Patients in the HSPC group were hospitalised for respiratory failure (incidence rate ratio (IRR) 1.87, 95% CI 1.04 to 3.48, P = 0.026) and admitted to the emergency ward (IRR 2.05, 95% CI 1.11 to 3.94, P = 0.014) twice as often during follow‐up than the control group. However, after the Benjamini and Hochberg correction for multiple testing, none of these differences was significant. Furthermore, median values were identical in both groups (hospitalisation: median (IQR): 0.0 (1 to 2) vs. 1.5 (1 to 4), P = 0.219; admissions to emergency wards: 1.0 (0; 3) vs. 1.0 (0; 4), P = 0.484).

Secondary outcomes:

There was no difference in HRQoL assessed using the SF‐36 between the HSPC and control group. There was no difference in anxiety and depression measured by the HADS‐anxiety and HADS‐depression between the intervention and control group. At inclusion, 3 patients in each group had completed their advanced care planning (ACP) directives (P = 1.00). At the end of the study, 9 patients (35%) of the intervention group versus 3 (13%) of the control group had completed ACP directives (P = 0.194). There was therefore a difference in the number of patients who wrote their ACP directives in favour of the intervention group (P = 0.023). Survival did not differ between the groups (P = 0.913). 8 deaths occurred, 4 in each group. In the intervention group, survival was 454 days (1.24 years; 95% CI: 382 to 525 vs. 425 days (1.16 years; 95% CI: 339 to 509) in the control group; P = 0.592.

Lowther 2018 (linked to Lowther 2015) (HIV patients)

20 patients (predominantly females (85%)) from the intervention group

Semi‐structured interviews analysed using thematic content analysis

Findings:

Patients reported that having time to talk, appropriate pain medication and effective health education was of therapeutic value for their psychological well‐being. Integration of mixed method findings suggested that positive effect in quantitative measures of mental health and well‐being were attributable to the active ingredients of: appropriate medication, effective health education and counselling, and having time to talk in clinical encounters. Mechanisms of action included symptom relief, improved understanding of illness and treatment, and support focussed on articulated concerns.

Participants whose quality of life remained static or deteriorated reported concurrent intractable physical or social problems which prevented them from fulfilling their social roles and led to financial difficulties. This in turn led to stress, which was a barrier to positive psychological well‐being.

Primary outcome:

In the control group, median pain score on the pain item of the APOS (range: 0 to 5; 0 indicates worst pain) improved from 1.0 (IQR 0.0 to 2.0) at baseline to 5.0 (3.0 to 5.0) at 4 months; in the HSPC group, it improved from 1.0 (0.0 to 2.0) at baseline to 4.5 (3.0 to 5.0) at 4 months. There was no between‐group difference (coefficient ‐0.01, 95% CI ‐0.36 to 0.34, P = 0.95).

Secondary outcomes:

Person‐centred assessment and care delivered by staff who had received additional training had positive effects on self‐reported mental health‐related quality of life and psychosocial well‐being.

Giovannetti 2018 (linked to Solari 2018) (multiple sclerosis)

12 patients, 15 caregivers, 8 physicians and nine members of HSPC team

Semi‐structured interviews analysed using framework method

Findings:

Three themes emerged from the interviews: 'expectations,' 'met and unmet needs', and 'barriers'. Participants described benefits from the intervention such as improved control of symptoms and reduced sense of isolation of the patient‐caregiver dyads. Patient‐caregiver dyads valued the expertise of the HSPC team. Limitations identified that included factors related to experimental design (difficulty of dyads in identifying examiner and team roles, additional burden for caregivers); team issues (insufficient team building/supervision, competing priorities); limitations of the intervention itself (insufficient length, lack of rehabilitation input); and external factors (resource limitations, under‐responsive services/professionals). The referring physician focus groups provided little experiential data.

Primary outcomes:

There was greater reduction in symptom burden (POS‐S‐MS) in the HSPC group compared to usual care (P = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months. Changes in quality of life (SEIQoL‐DW index) did not differ between the two groups.

Secondary outcomes:

There were no differences between the secondary patient (POS, HADS, FIM total score) and carer outcomes (ZBI) at three and six months. There were 22 serious adverse events in 20 patients, 15 events in 13 patients in the HSPC group (30%) and 7 events in 7 patients in the control group (27%; P = 0.78).

Slota 2014 (linked to Wallen 2012) (cancer patients)

In Wallen 2012, n was unclear while Slota 2014 had 34 participants

Open‐ended, qualitative questions on a questionnaire. Method of analysis stated in Wallen 2012 was transcript‐based analysis while thematic analysis was stated in Slota 2014

Findings:

Patients identified consistent communication, emotional support, and pain and symptom management as positive contributions delivered by the intervention. Consistent communication was described in terms of the team as a whole and their focus on individualising patients’ pain and comfort needs. When describing emotional support or 'being there' participants emphasised the support and reassurance they felt knowing the Pain and Palliative Care Team was available across time. They saw team members as their advocates.

Primary outcomes and

secondary outcomes:

There was no difference between HSPC and control group. However, for those who remained on study for 12 months, the HSPC group performed better than their standard of care counterparts.

ACP:
APOS: African Palliative Care Outcome Scale
BIS:
CI:
CNS: Clinical Nurse Specialist
COPD:
CRQ: Chronic Respiratory Questionnaire
ENABLE II:
FIM:
GBP: Great British Pounds
GP: General Practitioner
HADS: Hospital Anxiety and Depression Scale
HF:
HIV:
HRQL: Health‐Related Quality of Life
HRQoL:
HSPC:
n: number
HSPC: Hospital‐based Specialist Palliative Care
ILD:
IQR: Interquartile range
IRR:
POS: Palliative Care Outcome Scale
POS‐S‐MS:
SD:
SE: Standard Error
SEIQoL‐DW index: Schedule for the Evaluation of Individual Quality of Life‐Direct Weighting index
SF‐36:
ZBI: Zarit Burden Inventory

Figures and Tables -
Table 16. Studies with qualitative components
Comparison 1. Patient health‐related quality of life

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

1.1 HSPC versus usual care on patient HRQoL: adjusted endpoint values Show forest plot

10

1344

Std. Mean Difference (IV, Random, 95% CI)

0.26 [0.15, 0.37]

1.2 HSPC versus usual care on patient HRQoL: adjusted endpoint values (excluding McCorkle 2015) Show forest plot

9

1280

Std. Mean Difference (IV, Random, 95% CI)

0.29 [0.18, 0.40]

1.3 HSPC versus usual care on patient HRQoL: unadjusted endpoint values Show forest plot

9

1201

Std. Mean Difference (IV, Random, 95% CI)

0.41 [0.11, 0.70]

1.4 HSPC versus usual care on patient HRQoL: unadjusted endpoint values (excluding McCorkle 2015) Show forest plot

8

1137

Std. Mean Difference (IV, Random, 95% CI)

0.46 [0.13, 0.78]

1.5 HSPC versus usual care on patient HRQoL: unadjusted change values Show forest plot

9

1278

Std. Mean Difference (IV, Random, 95% CI)

0.67 [0.16, 1.18]

Figures and Tables -
Comparison 1. Patient health‐related quality of life
Comparison 2. Patient symptom burden

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

2.1 HSPC versus usual care on patient symptom burden: adjusted endpoint values Show forest plot

6

761

Std. Mean Difference (IV, Random, 95% CI)

‐0.26 [‐0.41, ‐0.12]

2.2 HSPC versus usual care on patient symptom burden: unadjusted endpoint values Show forest plot

6

833

Std. Mean Difference (IV, Random, 95% CI)

‐0.17 [‐0.54, 0.20]

2.3 HSPC versus usual care on patient symptom burden: unadjusted endpoint values (excluding McCorkle 2015) Show forest plot

5

769

Std. Mean Difference (IV, Random, 95% CI)

‐0.19 [‐0.62, 0.24]

2.4 HSPC versus usual care on patient symptom burden: adjusted change values Show forest plot

4

353

Std. Mean Difference (IV, Random, 95% CI)

‐1.31 [‐3.27, 0.64]

2.5 HSPC versus usual care on patient symptom burden: adjusted change values (excluding McCorkle 2015) Show forest plot

3

289

Std. Mean Difference (IV, Random, 95% CI)

‐1.79 [‐4.29, 0.70]

2.6 HSPC versus usual care on patient symptom burden: unadjusted change values Show forest plot

6

641

Std. Mean Difference (IV, Random, 95% CI)

‐0.44 [‐0.94, 0.06]

Figures and Tables -
Comparison 2. Patient symptom burden
Comparison 3. Patient satisfaction with care

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

3.1 HSPC versus usual care on patient satisfaction with care: adjusted endpoint values Show forest plot

2

337

Std. Mean Difference (IV, Random, 95% CI)

0.36 [0.14, 0.57]

Figures and Tables -
Comparison 3. Patient satisfaction with care
Comparison 4. Achieving patient preferred place of death

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

4.1 HSPC versus usual care on home deaths Show forest plot

7

861

Odds Ratio (M‐H, Random, 95% CI)

1.63 [1.23, 2.16]

Figures and Tables -
Comparison 4. Achieving patient preferred place of death
Comparison 5. Pain

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

5.1 HSPC versus usual care on pain: adjusted endpoint values Show forest plot

4

525

Std. Mean Difference (IV, Random, 95% CI)

‐0.16 [‐0.33, 0.01]

5.2 HSPC versus usual care on pain: adjusted change values Show forest plot

2

218

Std. Mean Difference (IV, Random, 95% CI)

‐0.47 [‐0.74, ‐0.20]

5.3 HSPC versus usual care on pain: unadjusted change values Show forest plot

2

291

Std. Mean Difference (IV, Random, 95% CI)

‐0.93 [‐3.05, 1.19]

Figures and Tables -
Comparison 5. Pain
Comparison 6. Patient anxiety

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

6.1 HSPC versus usual care on patient anxiety: adjusted endpoint values Show forest plot

5

384

Mean Difference (IV, Random, 95% CI)

‐0.63 [‐2.22, 0.96]

6.2 HSPC versus usual care on patient anxiety: adjusted endpoint values (excluding McCorkle 2015) Show forest plot

4

320

Mean Difference (IV, Random, 95% CI)

‐1.60 [‐2.56, ‐0.65]

6.3 HSPC versus usual care on patient anxiety: unadjusted endpoint values Show forest plot

4

273

Mean Difference (IV, Random, 95% CI)

‐0.90 [‐2.52, 0.71]

6.4 HSPC versus usual care on patient anxiety: unadjusted endpoint values (excluding McCorkle 2015) Show forest plot

3

209

Mean Difference (IV, Random, 95% CI)

‐1.48 [‐3.52, 0.56]

6.5 HSPC versus usual care on patient anxiety: unadjusted change values Show forest plot

4

496

Std. Mean Difference (IV, Random, 95% CI)

‐0.62 [‐1.02, ‐0.21]

6.6 HSPC versus usual care on patient anxiety in different populations: adjusted endpoint values Show forest plot

5

384

Mean Difference (IV, Random, 95% CI)

‐0.63 [‐2.22, 0.96]

6.6.1 Cancer populations

3

275

Mean Difference (IV, Random, 95% CI)

‐0.65 [‐3.03, 1.74]

6.6.2 Non‐cancer populations

2

109

Mean Difference (IV, Random, 95% CI)

‐0.82 [‐2.45, 0.80]

6.7 HSPC versus usual care on patient anxiety in different populations: adjusted endpoint values (excluding McCorkle 2015) Show forest plot

4

320

Mean Difference (IV, Random, 95% CI)

‐1.60 [‐2.56, ‐0.65]

6.7.1 Cancer populations

2

211

Mean Difference (IV, Random, 95% CI)

‐1.91 [‐3.12, ‐0.70]

6.7.2 Non‐cancer populations

2

109

Mean Difference (IV, Random, 95% CI)

‐0.82 [‐2.45, 0.80]

6.8 EPC vs LPC on patient anxiety: adjusted endpoint values Show forest plot

5

384

Mean Difference (IV, Random, 95% CI)

‐0.63 [‐2.22, 0.96]

6.8.1 Early palliative care (EPC)

2

221

Mean Difference (IV, Random, 95% CI)

‐0.57 [‐3.94, 2.79]

6.8.2 Late palliative care (LPC)

3

163

Mean Difference (IV, Random, 95% CI)

‐0.81 [‐2.14, 0.52]

6.9 Effect of MDT‐led services on patient anxiety: adjusted endpoint values Show forest plot

5

384

Mean Difference (IV, Random, 95% CI)

‐0.63 [‐2.22, 0.96]

6.9.1 MDT‐led services

5

384

Mean Difference (IV, Random, 95% CI)

‐0.63 [‐2.22, 0.96]

6.10 Effect of MDT‐led services on patient anxiety: adjusted endpoint values (excluding McCorkle 2015) Show forest plot

4

320

Mean Difference (IV, Random, 95% CI)

‐1.60 [‐2.56, ‐0.65]

6.10.1 MDT‐led services

4

320

Mean Difference (IV, Random, 95% CI)

‐1.60 [‐2.56, ‐0.65]

6.11 HSPC versus usual care on patient anxiety in different countries: adjusted endpoint values Show forest plot

5

384

Mean Difference (IV, Random, 95% CI)

‐0.63 [‐2.22, 0.96]

6.11.1 Studies from USA

3

251

Mean Difference (IV, Random, 95% CI)

‐0.32 [‐3.04, 2.39]

6.11.2 Studies from UK

2

133

Mean Difference (IV, Random, 95% CI)

‐1.02 [‐2.45, 0.42]

6.12 HSPC versus usual care on patient anxiety in different countries: adjusted endpoint values (excluding McCorkle 2015) Show forest plot

4

320

Mean Difference (IV, Random, 95% CI)

‐1.60 [‐2.56, ‐0.65]

6.12.1 Studies from USA

2

187

Mean Difference (IV, Random, 95% CI)

‐1.45 [‐3.90, 1.00]

6.12.2 Studies from UK

2

133

Mean Difference (IV, Random, 95% CI)

‐1.02 [‐2.45, 0.42]

Figures and Tables -
Comparison 6. Patient anxiety
Comparison 7. Unpaid caregiver anxiety

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

7.1 HSPC versus usual care on unpaid caregiver anxiety: unadjusted endpoint values Show forest plot

2

351

Mean Difference (IV, Random, 95% CI)

‐0.71 [‐4.27, 2.85]

Figures and Tables -
Comparison 7. Unpaid caregiver anxiety
Comparison 8. Patient depression

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

8.1 HSPC versus usual care on patient depression: adjusted endpoint values Show forest plot

8

1096

Std. Mean Difference (IV, Random, 95% CI)

‐0.22 [‐0.34, ‐0.10]

8.2 HSPC versus usual care on patient depression: unadjusted endpoint values Show forest plot

5

350

Std. Mean Difference (IV, Random, 95% CI)

‐0.25 [‐0.55, 0.04]

8.3 HSPC versus usual care on patient depression: unadjusted endpoint values (excluding McCorkle 2015) Show forest plot

4

286

Std. Mean Difference (IV, Random, 95% CI)

‐0.34 [‐0.65, ‐0.03]

8.4 HSPC versus usual care on patient depression: adjusted change values Show forest plot

2

231

Mean Difference (IV, Random, 95% CI)

‐0.32 [‐1.10, 0.45]

8.5 HSPC versus usual care on patient depression: unadjusted change values Show forest plot

4

488

Std. Mean Difference (IV, Random, 95% CI)

‐0.38 [‐0.58, ‐0.18]

8.6 HSPC versus usual care on patient depression as a binary outcome Show forest plot

3

338

Odds Ratio (M‐H, Random, 95% CI)

0.38 [0.21, 0.68]

Figures and Tables -
Comparison 8. Patient depression
Comparison 9. Unpaid caregiver depression

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

9.1 HSPC versus usual care on unpaid caregiver depression: adjusted endpoint values Show forest plot

2

413

Std. Mean Difference (IV, Random, 95% CI)

‐0.02 [‐0.21, 0.18]

9.2 HSPC versus usual care on unpaid caregiver depression: unadjusted endpoint values Show forest plot

3

420

Std. Mean Difference (IV, Random, 95% CI)

‐0.29 [‐0.70, 0.12]

Figures and Tables -
Comparison 9. Unpaid caregiver depression
Comparison 10. Unpaid caregiver quality of life

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

10.1 HSPC versus usual care on unpaid caregiver quality of life: unadjusted endpoint values Show forest plot

2

105

Mean Difference (IV, Random, 95% CI)

6.11 [0.42, 11.81]

Figures and Tables -
Comparison 10. Unpaid caregiver quality of life
Comparison 11. Unpaid caregiver burden

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

11.1 HSPC versus usual care on unpaid caregiver burden: adjusted change values Show forest plot

3

128

Mean Difference (IV, Random, 95% CI)

‐3.88 [‐5.95, ‐1.80]

Figures and Tables -
Comparison 11. Unpaid caregiver burden
Comparison 12. Patient breathlessness

Outcome or subgroup title

No. of studies

No. of participants

Statistical method

Effect size

12.1 HSPC versus usual care on patient breathlessness: adjusted endpoint values Show forest plot

5

616

Std. Mean Difference (IV, Random, 95% CI)

‐0.04 [‐0.19, 0.12]

12.2 HSPC versus usual care on patient breathlessness: unadjusted endpoint values Show forest plot

2

128

Std. Mean Difference (IV, Random, 95% CI)

‐0.35 [‐0.70, ‐0.00]

12.3 HSPC versus usual care on patient breathlessness: unadjusted change values Show forest plot

2

292

Std. Mean Difference (IV, Random, 95% CI)

‐0.47 [‐1.55, 0.61]

Figures and Tables -
Comparison 12. Patient breathlessness