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Notificación a los padres del estado de portador del recién nacido identificado mediante el cribado habitual de gota de sangre

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Referencias

References to studies excluded from this review

Mischler 1998 {published data only}

Mischler EH, Wilfond BS, Fost N, Laxova A, Reiser C, Sauer CM. Cystic fibrosis newborn screening: impact on reproductive behavior and implications for genetic counseling. Pediatrics 1998;102(1 Pt 1):44‐52.

Tluczek 1992 {published data only}

Tluczek A, Mischler EH, Farrell PM, Fost N, Peterson NM, Carey P, et al. Parents' knowledge of neonatal screening and response to false‐positive cystic fibrosis testing. Journal of Developmental & Behavioral Pediatrics 1992;13(3):181‐6.

Additional references

Antley 1973

Antley MA, Antley RM, Hartlage LC. Effects of genetic counseling on parental self‐concepts. Journal of Psychology 1973;83:335‐8.

Carpenter 2001

Carpenter K, Wiley V, Sim KG, Heath D, Wilcken B. Evaluation of newborn screening for medium‐chain acyl‐CoA dehydrogenase deficiency in 275000 babies. Archives of Disease in Childhood: Fetal & Neonatal Edition 2001;85(2):F105‐9.

Ciske 2001

Ciske DJ, Haavisto A, Laxova A, Rock LZ, Farrell PM. Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process. Pediatrics 2001;107(4):699‐705.

Comeau 2004

Comeau AM, Larson C, Eaton RB. Integration of new genetic diseases into statewide newborn screening: New England Experience. Journal of Medical Genetics Part C (Seminars Med Genet) 2004;125C:35‐41.

Davies 2000

Davies SC, Cronin E, Gill M, Greengross P, Hickman M, Normand C. Screening for sickle cell disease and thalassaemia: a systematic review with supplementary research. Health Technololgy Assessment 2000;4(3):i‐v, 1‐99.

Farrell 2001

Farrell M, Certain L, Farrell P. Genetic counseling and risk communication services of newborn screening programs. Archives of Pediatrics & Adolescent Medicine 2001;155:120‐6.

Hall 2000

Hall S, Bobrow M, Marteau TM. Psychological consequences for parents of false negative results on prenatal screening for Down's syndrome: retrospective interview study. BMJ 2000;320(7232):407‐12.

Hampton 1974

Hampton ML, Anderson J, Lavizzo BS, Bergmen AB. Sickle cell 'nondisease': a potentially serious public health problem. American Journal of Diseases of Children 1974;128(1):58‐61.

Hargreaves 2005

Hargreaves K, Stewart R, Oliver S. Newborn screening information supports public health more than informed choice. Health Education Journal 2005;64(2):110‐19. [DOI: 10.1177/001789690506400203]

Holloway 1994

Holloway S, Brock DJ. Cascade testing for the identification of carriers of cystic fibrosis. Journal of Medical Screening 1994;1(3):159‐64.

Kai 2009

Kai J, Ulph F, Cullinan T, Qureshi N. Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice. Health Technology Assessment 2009;13(57):1‐82, iii. [DOI: 10.3310/hta13570]

Lagoe 2005

Lagoe E, Labella S, Arnold G, Rowley PT. Cystic fibrosis newborn screening: a pilot study to maximize carrier screening. Genetic Testing 2005;9(3):255‐60.

Laird 1996

Laird L, Dezateux C, Anionwu EN. Neonatal screening for sickle cell disorders: what about the carrier infants?. BMJ 1996;313(7054):407‐11.

Lees 2000

Lees CM, Davies S, Dezateux C. Neonatal screening for sickle cell disease. Cochrane Database of Systematic Reviews 2000, Issue 1. [DOI: 10.1002/14651858.CD001913]

Lempert 2004a

Lempert T, Oliver S, Stewart R, Dezateux C. Newborn screening for cystic fibrosis in England, Wales, and Northern Ireland: policy and practice of screening laboratories. Social Science Research Unit, Institute of Education, University of London2004.

Lempert 2004b

Lempert T, Oliver S, Stewart R, Dezateux C. Communication of carrier results following newborn blood spot screening: parents' and health professionals' experiences. Social Science Research Unit, Institute of Education, University of London2004.

Love‐Gregory 2001

Love‐Gregory LD, Dyer JA, Grasela J, Hillman RE, Phillips CL. Carrier detection and rapid newborn diagnostic test for the common Y393N maple syrup urine disease allele by PCR‐RFLP: culturally permissible testing in the Mennonite community. Journal of Inherited Metabolic Disease 2001;24(3):393‐403.

Lucassen 2001

Lucassen A, Parker M. Revealing false paternity: some ethical considerations. The Lancet 2001;357(9261):1033‐5.

Macintyre 1991

Macintyre S, Sooman A. Non‐paternity and prenatal genetic screening. The Lancet 1991;338(8771):869‐71.

Marteau 1992

Marteau TM, van Duijn M, Ellis I. Effects of genetic screening on perceptions of health: a pilot study. Journal of Medical Genetics 1992;29(1):24‐6.

Murray 1999

Murray J, Cuckle H, Taylor G, Littlewood J, Hewison J. Screening for cystic fibrosis. Health Technology Assessment 1999;3(8):i‐iv, 1‐104.

Oliver 1997

Oliver S. Exploring lay perspectives on questions of effectiveness. In: Maynard A, Chalmers I editor(s). Non‐random reflections on health services research. London: BMJ Publishing Group, 1997:272‐91.

Oliver 2004

Oliver S, Lempert T, Kavanagh J, Stewart R, Dezateux C. Disclosing carrier status to parents following newborn screening. London: EPPI‐Centre, Social Science Research Unit, Institute of Education, University of London2004.

Parsons 1996

Parsons EP, Bradley DM, Clarke AJ. Disclosure of Duchenne Muscular Dystrophy after newborn screening. Archives of Diseases in Childhood 1996;74(6):550‐3.

Peersman 1999

Peersman G, Oakley A, Oliver S. Evidence‐based health promotion? Some methodological challenges. Journal of the Institute of Health Education 1999;37(2):59‐64.

Shaw 1999

Shaw C, Abrams K, Marteau T. Psychological impact of predicting individuals' risks of illness: a systematic review. Social Science Medicine 1999;49(12):1571‐98.

Southern 2009

Southern KW, Mérelle MME, Dankert‐Roelse JE, Nagelkerke A. Newborn screening for cystic fibrosis. Cochrane Database of Systematic Reviews 2009, Issue 1. [DOI: 10.1002/14651858.CD001402.pub2]

Stewart 2005

Stewart R, Hargreaves K, Oliver S. Evidence informed policy making for health communication. Health Education Journal 2005;64(2):120‐8. [DOI: 10.1177/001789690506400204]

Turner 1993

Turner G, Meagher W, Willis C, Colley P. Cascade testing for carrier status in cystic fibrosis in a large family. Medical Journal of Australia 1993;159(3):163‐5.

UK NSPC 2013

UK Newborn Screening Programme Centre, London. Data Collection and Performance Analysis Report. Newborn Blood Spot Screening in the UK 2011‐12,March 2013.

Wooldridge 1988

Wooldridge EQ, Murray RF. The health orientation scale: a measure of feelings about sickle cell trait. Social Biology 1988;35(1‐2):123‐36.

Zeuner 1999

Zeuner D, Ades AE, Karnon J, Brown J, Dezateux C, Anionwu EN. Antenatal and neonatal haemoglobinopathy screening in the UK: review and economic analysis. Health Technology Assessment 1999;3(11):i‐v, 1‐186.

References to other published versions of this review

Oliver 2002

Oliver S, Dezateux C, Kavanagh J, Lempert T, Stewart R. Disclosing carrier status to parents following newborn screening. Cochrane Database of Systematic Reviews 2002, Issue 4. [DOI: 10.1002/14651858.CD003859]

Characteristics of studies

Characteristics of excluded studies [ordered by study ID]

Study

Reason for exclusion

Mischler 1998

In‐depth counselling following disclosure of carrier status with a post‐test only design addressing knowledge, retention of carrier status information, understanding, attitudes and openness about the results with other family members (nested within an RCT of screening).

Tluczek 1992

A post‐test only design to assess parental knowledge of screening, education levels, emotional response, parent‐child relationship and reproductive plans following raised IRT screening results and a negative sweat test (nested within an RCT of screening for CF).