Quality of life of former premature infants during adolescence and beyond

Early Human Development

Volumn 89, Issue 4, 2013, Pages 209-213

  Saigal, Saroj ^a  

^a MCMASTER UNIVERSITY   (Canada)

Author keywords

Functional status; Health status; Health related quality of life; Prematurity; Quality of life

Indexed keywords

ADOLESCENCE; ADULTHOOD; BIRTH WEIGHT; CHILD HEALTH AND ILLNESS PROFILE; CHILD HEALTH QUESTIONNAIRE; CONCEPTUAL FRAMEWORK; DISABILITY; EXQOL; HEALTH UTILITY INDEX; HUMAN; INFANT; KIDSCREEN 52; NORDIC QOL QUESTIONNAIRE; PEDSQ; PREMATURITY; QUALITY ADJUSTED LIFE YEAR; QUALITY OF LIFE; QUESTIONNAIRE; RATING SCALE; REVIEW; SELF CONCEPT; SELF REPORT; VISUAL ANALOG SCALE; WELLBEING;

ADOLESCENT; ADOLESCENT BEHAVIOR; ADOLESCENT DEVELOPMENT; HUMANS; INFANT, NEWBORN; INFANT, PREMATURE; QUALITY OF LIFE; YOUNG ADULT;

EID: 84875364358     PISSN: 03783782     EISSN: 18726232     Source Type: Journal    
DOI: 10.1016/j.earlhumdev.2013.01.012     Document Type: Review

References (51)

1. Guyatt G.H., Cook D.J. Health status, quality of life and the individual [commentary]. JAMA 1994, 272:630-631.
2. Gill T.M., Feinstein A.R. A critical appraisal of the quality of quality-of-life measurements. JAMA 1994, 272:619-626.
3. Saigal S., Tyson J. Measurement of quality of life of survivors of neonatal intensive care: critique and implications. Semin Perinatol 2008, 32:59-66.
4. Leplege A., Hunt S. The problem of quality of life in medicine [special communication]. JAMA 1997, 278:47-50.
5. Colver A., Jessen C. Measurement of health status and quality of life in neonatal follow-up studies. Semin Neonatol 2000, 5:149-157.
6. Smith K.W., Avis N.E., Assmann S.F. Distinguishing between quality of life and health status in quality of life research: a meta-analysis. Qual Life Res 1999, 5:447-459.
7. WHO Constitution of the World Health Organization 1948, WHO, Geneva, Switzerland.
8. Davis E., Waters E., Mackinnon A., Reddihough D., Graham H.K., Mehmet-Radji O., et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006, 48:311-318.
9. Speith L.E., Harris C.V. Assessment of health-related quality of life in children and adolescents: an integrative review. J Pediatr Psychol 1996, 21:175-193.
10. Bowling A. Measuring health: a review of quality of life measurement scales 1991, Open University Press, Buckingham, UK.
11. Ware J.E. Conceptualizing disease impact and treatment outcomes. Cancer 1984, 15(S):2316-2323.
12. The WHOQOL Group The World Health Organization quality of life assessment (WHOQOL): position paper from The World Health Organization. Soc Sci Med 1995, 41:1403-1409.
13. Eiser C., Morse R. The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 2001, 22:248-256.
14. Carr A.J., Gibson B., Robinson P.G. Measuring quality of life. Is quality of life determined by expectations or experience?. BMJ 2001, 322:1240-1243.
15. Landgraf J.M., Abetz I., Ware J.E. Child health questionnaire: a user's manual 1996, The Health Institute, New England Medical Centre, Boston, MA. First edition.
16. Starfield B., Riley A.W., Green B.F., Ensminger M.E., Ryan S.A., Kelleher K., et al. The adolescent child health and illness profile. A population-based measure of health. Med Care 1995, 33:553-556.
17. Ware J.E. The MOS 36-item short-form health survey (SF-36). Conceptual framework and item selection. Med Care 1992, 30(6):473-483.
18. Varni J.W., Seid M., Rode C.A. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999, 37:126-139.
19. Dickenson H.O., Parkinson K.N., Ravens-Sieber U., Schirripa G., Thyen U., Arnaud C., et al. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. Lancet 2007, 369:2171-2178.
20. Waters E., Davis E., Mackinnon A., Boyd R., Graham H.K., Kai Lo S., et al. Psychometric properties of the quality of life questionnaire for children with CP. Dev Med Child Neurol 2007, 49:49-55.
21. Eiser C., Vance Y.H., Seamark D. The development of a theoretically driven generic measure of quality of life for children aged 6-12years: a preliminary report. Child Care Health Dev 2000, 26:445-456.
22. Lindstrom B., Eriksson B. Quality of life among children in the Nordic countries. Qual Life Res 1993, 2:23-32.
23. Feeny D., Furlong W., Barr R.D. Multiattribute approach to the assessment of health-related quality of life: health utilities index. Med Pediatr Oncol 1998, 1(Suppl.):54-59.
24. Saigal S., Feeny D., Rosenbaum P., Furlong W., Burrows E., Stoskopf B. Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA 1996, 276:453-459.
25. Saigal S., Stoskopf B., Pinellli J., Streiner D., Hoult L., Paneth N., et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood. Pediatrics 2006, 118:1140-1148.
26. Ravens-Sieberer U., Erhart M., Gosch A., Willie N. European KIDSCREEN Group. Mental health of children and adolescents in 12 European countries - results from the European KIDSCREEN study. Clin Psychol Psychother 2008, 15:154-163.
27. Brown R.D., Renwick R. Quality of life - Dream or reality? Life for people with developmental disabilities in Ontario 1997, University of Toronto, Centre for Health Promotion, Toronto.
28. Rosenbaum P.L., Livingston M.H., Palisano R.J., Galuppi B.E., Russell D.J. Quality of life and health-related quality of life of adolescents with cerebral palsy. Dev Med Child Neurol 2007, 49:516-521.
29. Zwicker J.G., Richardson Harris S. Quality of life of formerly preterm and very low birth weight infants from preschool age to adulthood: a systematic review. Pediatrics 2008, 121:e366-e376.
30. Torrance G.W., Feeny D.H., Furlong W., Barr R.D., Zhang Y., Wang Q. Multi-attribute utility function for a comprehensive health status classification system: Health Utilities Index Mark 2. Med Care 1996, 34:702-722.
31. Feeny D., Furlong W., Saigal S., Sun J. Comparing directly measured standard gamble scores to HUI2 and HUI3 utility scores: group-and individual-level comparisons. Soc Sci Med 2004, 58:799-809.
32. Saigal S., Rosenbaum P.L., Feeny D., Burrows E., Furlong W., Stoskopf B., et al. Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics 2000, 105:569-574.
33. Gray R., Petrou S., Hockley C., Gardner F. Self-reported health status and health-related quality of life of teenagers who were born before 29weeks' gestational age. Pediatrics 2007, 120:e86-e93.
34. Verrips E., Vogels T., Saigal S., Wolke D., Meyer R., Hoult L., et al. Health-related quality of life in extremely low birth weight adolescents in Canada, Germany and the Netherlands. Pediatrics 2008, 122:556-561.
35. Indredavik M.S., Vik T., Heyerdahl S., Romundstad P., Brubakk A.M. Low-birthweight adolescents: quality of life and parent-child relations. Acta Pediatr 2005, 94:1295-1302.
36. Johnson A., Bowler U., Yudkin P., Hockley C., Wariyar U., Gardner F., et al. Health and school performance of teenagers born before 29weeks' gestation. Arch Dis Child Fetal Neonatal Ed 2003, 88:F190-F198.
37. Hallin A.-L., Stjernqvist K. Adolescents born extremely preterm: behavioral outcomes and quality of life. Scand J Psychol 2011, 52:251-256.
38. Bjerager M., Steensberg J., Greisen G. Quality of life among young adults born with very low birthweights. Acta Paediatr 1995, 84:1339-1343.
39. Dinesen S.J., Greisen G. Quality of life in young adults with very low birth weight. Arch Dis Child Fetal Neonatal Ed 2001, 85:F165-F169.
40. Cooke R.W. Health, lifestyle and quality of life for young adults born very preterm. Arch Dis Child 2004, 89:201-206.
41. Baumgardt M., Bucher H.U., Mieth R.A., Fauchère J.C. Health-related quality of life of former very preterm infants in adulthood. Acta Paediatr 2012, 101:e59-e63.
42. Dalziel S.R., Lim V.K., Lambert A., McCarthy D., Parag V., Rodgers A., et al. Psychological functioning and health-related quality of life in adulthood after preterm birth. Dev Med Child Neurol 2007, 49:597-602.
43. Verrips G., Brouwer L., Vogels T., Taal E., Drossaert C., Feeny D., et al. Long term follow-up of health-related quality of life in young adults born very preterm or with a very low birth weight. Health Qual Life Outcomes 2012, 10:49-56.
44. Kaempf J.W., Tomlinson M. Long-term health outcomes of extremely premature infants. Pediatrics 2007, 119:410-411.
45. Harrison H. Making lemonade: a parent's view of "quality of life" studies. J Clin Ethics 2001, 12:239-250.
46. Eiser C., Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10:347-357.
47. Saigal S., Stoskopf B.L., Feeny D., Furlong W., Burrows E., Rosenbaum P., et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA 1999, 281:1991-1997.
48. Asch A. Special section:difference and the delivery of healthcare. Distracted by disability. Camb Q Healthc Ethics 1998, 7:77-87.
49. Albrecht G., Devlieger P.J. The disability paradox: high quality life against all odds. Soc Sci Med 1999, 48:977-988.
50. Smith D.M., Loewenstein G., Jankovic A., Ubel P.A. Happily hopeless: adaptation to a permanent, but not to a temporary, disability. Health Psychol 2009, 28:787-791.
51. Saigal S., Stoskopf B., Hoult L., Boyle M., Pinelli J., Streiner D., et al. Letter to the editor. Pediatrics 2007, 119:410-412. (Kaemf JW, Tomlinson M. Long-term health outcomes of extremely premature infants. Pediatrics 2007;119:410-1).