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A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness

  • Jennifer Stinson EMAIL logo , Sara Ahola Kohut , Lynn Spiegel , Meghan White , Navreet Gill , Gina Colbourne , Samantha Sigurdson , Karen Watanabe Duffy , Lori Tucker , Elizabeth Stringer , Beth Hazel , Jacqueline Hochman , John Reiss und Miriam Kaufman
Veröffentlicht/Copyright: 6. Juli 2013

Abstract

Background: The transition from pediatric to adult health care can be challenging for adolescents with chronic illnesses. As a result, many adolescents are unable to transfer to adult health care successfully. Adequate measurement of transition readiness and transfer satisfaction with disease management is necessary in order to determine areas to target for intervention towards improving transfer outcomes.

Objectives: This study aims to systematically review and critically appraise research on transition readiness and transfer satisfaction measures for adolescents with chronic illnesses as well as to assess the psychometric quality of these measures.

Methods: Electronic searches were conducted in MEDLINE, EMBASE, CINAHL, PsychINFO, ERIC, and ISI Web of Knowledge for transition readiness and transfer satisfaction measures for adolescents with chronic health conditions. Two reviewers independently selected articles for review and assessed methodological quality.

Results: In all, eight readiness and six satisfaction measures met the inclusion criteria, for a total of 14 studies, which were included in the final analysis. None of these measures have well-established evidence of reliability and validity. Most of the measures were developed ad hoc by the study investigators, with minimal to no evidence of reliability and/or validity using the Cohen criteria and COSMIN checklist.

Conclusion: This research indicates a major gap in our knowledge of transitional care in this population, because there is currently no well-validated questionnaire that measures readiness for transfer to adult health care. Future research must focus on the development of well-validated transition readiness questionnaires, the validation of existing measures, and reaching consensus on outcomes of successful transfer.


Corresponding author: Jennifer Stinson, RN, PhD, CPNP, Child Health Evaluative Sciences, Research Institute, SickKids, 555 University Avenue, Toronto, ON M5G 1X8, Canada, Phone: +416-813-7654 ext.4514, Fax: +416-813-2143, E-mail:

Acknowledgments

The authors would like to acknowledge the Canadian Arthritis Network for providing financial support for this review.

References

1. Tuchman LK, Schwartz LA, Sawicki GS, Britto MT. Cystic fibrosis and transition to adult medical care. Pediatrics 2010;125:566–73.10.1542/peds.2009-2791Suche in Google Scholar

2. McDonagh JE. Transition of care from paediatric to adult rheumatology. Arch Dis Child 2007;92:802–7.10.1136/adc.2006.103796Suche in Google Scholar

3. Kaufman M. Role of adolescent development in the transition process. Prog Transplant 2006;16:286–90.10.1177/152692480601600402Suche in Google Scholar

4. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolescent Health 2003;33:309–11.10.1016/S1054-139X(03)00208-8Suche in Google Scholar

5. Kaufman M, Pinzon J. Transition to adult care for youth with special health care needs. Paediatr Child Health 2007;12:785–93.10.1093/pch/12.9.785Suche in Google Scholar PubMed PubMed Central

6. Viner RM. Transition of care from paediatric to adult services: one part of improved health services for adolescents. Arch Dis Childhood 2008;93:160–3.10.1136/adc.2006.103721Suche in Google Scholar PubMed

7. Hazel E, Zhang X, Duffy CM, Campillo S. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatric Rheumatology Online J 2010;8:2.10.1186/1546-0096-8-2Suche in Google Scholar PubMed PubMed Central

8. McLaughlin SE, Diener-West M, Indurkhya A, Rubin H, Heckmann R, et al. Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices. Pediatrics 2008;121:e1160–6.10.1542/peds.2007-2217Suche in Google Scholar PubMed

9. Nakhla M, Daneman D, To T, Paradis G, Guttmann A. Transition to adult care for youths with diabetes mellitus: findings from a universal health care system. Pediatrics 2009;124:e1134–41.10.1542/peds.2009-0041Suche in Google Scholar PubMed

10. Annunziato RA, Parkar S, Dugan CA, Barsade S, Arnon R, et al. Brief report: Deficits in health care management skills among adolescent and young adult liver transplant recipients transitioning to adult care settings. J Pediatr Psychol 2011;36:155–9.10.1093/jpepsy/jsp110Suche in Google Scholar PubMed

11. Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128:182–200.10.1542/peds.2011-0969Suche in Google Scholar

12. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolescent Health 1993;14:570–6.10.1016/1054-139X(93)90143-DSuche in Google Scholar

13. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011;96:548–53.10.1136/adc.2010.202473Suche in Google Scholar PubMed

14. Smith GM, Lewis VR, Whitworth E, Gold DT, Thornburg CD. Growing up with sickle cell disease: a pilot study of a transition program for adolescents with sickle cell disease. J Pediatr Hematol Onc 2011;33:379–82.10.1097/MPH.0b013e318211bb2eSuche in Google Scholar PubMed

15. Van Staa A, Van Der Stege HA, Jedeloo S, Moll HA, Hilberink SR. Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J Adolescent Health 2011;48:295–302.10.1016/j.jadohealth.2010.07.009Suche in Google Scholar PubMed

16. Cohen LL, La Greca AM, Blount RL, Kazak AE, Holmbeck GN, et al. Introduction to special issue: evidence-based assessment in pediatric psychology. J Pediatr Psychol 2008;33:911–5.10.1093/jpepsy/jsj115Suche in Google Scholar PubMed PubMed Central

17. Mokkink LB, Terwee CB, Knol DL, Stratford PW, Alonso J, et al. Protocol of the COSMIN study: consensus-based standards for the selection of health measurement instruments. BMC Med Res Methodol 2006;6:2.10.1186/1471-2288-6-2Suche in Google Scholar PubMed PubMed Central

18. Cappelli M, MacDonald NE, McGrath PJ. Assessment of readiness to transfer to adult care for adolescents with cystic fibrosis. Child Health Care 1989;18:218–24.10.1207/s15326888chc1804_4Suche in Google Scholar PubMed

19. McPherson M, Thaniel L, Minniti CP. Transition of patients with sickle cell disease from pediatric to adult care: assessing patient readiness. Pediatric Blood Cancer 2009;52:838–41.10.1002/pbc.21974Suche in Google Scholar PubMed

20. Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ-Transition Readiness Assessment Questionnaire. J Pediatr Psychol 2011;36:160–71.10.1093/jpepsy/jsp128Suche in Google Scholar PubMed PubMed Central

21. Williams TS, Sherman EMS, Dunseith C, Mah JK, Blackman M, et al. Measurement of medical self-management and transition readiness among Canadian adolescents with special health care needs. J Child Adol Health 2010;3:1–9.Suche in Google Scholar

22. Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, et al. A clinical tool to measure the components of health-care transition from pediatric care to adult care: The UNC TRxANSITION Scale. Renal Failure 2012;34:744–53.10.3109/0886022X.2012.678171Suche in Google Scholar PubMed

23. Dudman L, Rapley P, Wilson S. Development of a transition readiness scale for young adults with cystic fibrosis: face and conten validity. Neonatal Paediatr Child Health Nursing 2011;14:9–13.Suche in Google Scholar

24. Miller VA, Harris D. Measuring children’s decision-making involvement regarding chronic illness management. J Pediatric Psychol 2012;37:292–306.10.1093/jpepsy/jsr097Suche in Google Scholar PubMed PubMed Central

25. Busse FP, Hiermann P, Galler A, Stumvoll M, Wiessner T, et al. Evaluation of patients’ opinion and metabolic control after transfer of young adults with type 1 diabetes from a pediatric diabetes clinic to adult care. Horm Res 2007;67:132–8.10.1159/000096583Suche in Google Scholar PubMed

26. Cadario F, Prodam F, Bellone S, Trada M, Binotti M, et al. Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach. Clin Endocrinol (Oxf) 2009;71:46–50.10.1111/j.1365-2265.2008.03467.xSuche in Google Scholar PubMed

27. Pacaud D, McConnell B, Huot C. Transition from pediatric care to adult care for insulin-dependend diabetes patients. Cndn J Diabetes Care 1996;20:14–20.Suche in Google Scholar

28. Remorino R, Taylor J. Smoothing things over: the transition from pediatric to adult care for kidney transplant recipients. Prog Transplant 2006;16:303–8.10.1177/152692480601600404Suche in Google Scholar

29. Shaw KL, Southwood TR, McDonagh JE. Development and preliminary validation of the’Mind the Gap’ scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis. Child Care Health Dev 2007;33:380–8.10.1111/j.1365-2214.2006.00699.xSuche in Google Scholar PubMed

30. Sonneveld HM, Strating MM, van Staa AL, Nieboer AP. Gaps in transitional care: what are the perceptions of adolescents, parents and providers? Child Care Health Dev 2013;39:69–80.10.1111/j.1365-2214.2011.01354.xSuche in Google Scholar PubMed

31. Malbrunot-Wagner AC, Bonnemains C, Troussier F, Darviot E, Chiffoleau M, et al. Transition from pediatric to adult care: experience of a cystic fibrosis care center. Arch Pediatr 2009;16:235–42. Passage de l’enfant a l’adulte: l’exemple d’un centre de ressources et de competences pour la mucoviscidose.10.1016/j.arcped.2008.12.021Suche in Google Scholar PubMed

32. US Department of Health and Human Services Food and Drug Administration. Guidance for industry patient-reported outcome measures: use in medical product development to support labelling claims, 2009.Suche in Google Scholar

33. Department of Health/Child Health and Maternity Services Branch. Transition: getting it right for young people. Improving the transition of young people with long term conditions from children’s to adult health services. London: Department of Health, 2006.Suche in Google Scholar

34. McDonagh JE, Kaufman M. Transition from pediatric to adult care after solid organ transplantation. Curr Opin Organ Transplant 2009;14:526–32.10.1097/MOT.0b013e32832ffb2aSuche in Google Scholar PubMed

35. Betz CL. Transition of adolescents with special health care needs: review and analysis of the literature. Issues in comprehensive pediatric nursin 2004;27:179–241.10.1080/01460860490497903Suche in Google Scholar PubMed

36. Betz C SK. Measuring health care transition planning outcomes: Challenges and issues. Int J Child Adolesc Health 2011;3:463–72.Suche in Google Scholar

37. Tuchman LK, Slap GB, Britto MT. Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev 2008;34:557–63.10.1111/j.1365-2214.2008.00844.xSuche in Google Scholar PubMed

Received: 2013-3-20
Accepted: 2013-5-15
Published Online: 2013-7-6
Published in Print: 2014-5-1

©2014 by Walter de Gruyter Berlin/Boston

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  6. Original articles
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