A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness
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.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
There is a paucity of research examining a broad spectrum of health outcomes based on transition readiness scores and/or use of these tools in AYA with chronic conditions.
“There is a paucity of research examining a broad spectrum of health outcomes, including developmental and biopsychosocial outcomes (eg, adherence, self-efficacy, QoL) based on transition readiness scores and/or use of these tools in AYA with chronic conditions.537,542”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [542]
Several general (non-disease specific) transition readiness tools have been created, with variable psychometric properties.
“Several general (non-disease specific) transition readiness tools have been created, with variable psychometric properties.542”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [542]
Longitudinal studies of transition readiness tools have not been conducted.
“Further, whereas these tools have been designed to assess progress towards transition readiness over time,451 longitudinal studies have not been conducted.537,542”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [542]
Cites
Transition from child-centered to adult health-care systems for adolescents with chronic conditions
Blum, R. W., Garell, D. C., Hodgman, C. H., Jorissen, T. W., Okinow, N., Orr, D. P., & Slap, G. B. (1993) · Journal of Adolescent Health · doi:10.1016/1054-139x(93)90143-d · Cited by 1,538 · see citing works
Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home
White, P. H., Cooley, W. C., & TRANSITIONS CLINICAL REPORT AUTHORING GROUP, A. A. O. P. (2018) · Pediatrics · doi:10.1542/peds.2018-2587 · Cited by 1,417 · see citing works
Improving the transition between paediatric and adult healthcare: a systematic review
Crowley, R., Wolfe, I., Lock, K., & McKee, M. (2011) · Archives of Disease in Childhood · doi:10.1136/adc.2010.202473 · Cited by 649 · cited 1× · see citing works
“Despite the wide number of transition programs that have been recently developed, there is a paucity of research on their effectiveness (2, 13, 14).”
Transition to adult health care for adolescents and young adults with chronic conditions
Rosen, D. S., Blum, R. W., Britto, M. T., Sawyer, S. M., & Siegel, D. M. (2003) · Journal of Adolescent Health · doi:10.1016/s1054-139x(03)00208-8 · Cited by 624 · see citing works
Sawicki, G. S., Lukens-Bull, K., Yin, X., Demars, N., Huang, I.-C., Livingood, W., Reiss, J., & Wood, D. (2011) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsp128 · Cited by 592 · see citing works
Self-citationMokkink, L. B., Terwee, C. B., Knol, D., Stratford, P. W., Alonso, J., Patrick, D. L., Bouter, L. M., & de Vet, H. C. W. (2006) · BMC Medical Research Methodology · doi:10.1186/1471-2288-6-2 · Cited by 397 · see citing works
Nakhla, M. M., Daneman, D., To, T. M., Paradis, G., & Guttmann, A. (2009) · PEDIATRICS · doi:10.1542/peds.2009-0041 · Cited by 309 · see citing works
Transition to adult care: experiences and expectations of adolescents with a chronic illness
Tuchman, L. K., Slap, G. B., & Britto, M. T. (2008) · Child Care Health and Development · doi:10.1111/j.1365-2214.2008.00844.x · Cited by 230 · see citing works
Cadario, F., Prodam, F., Bellone, S., Trada, M., Binotti, M., Trada, M., Allochis, G., Baldelli, R., Esposito, S., Bona, G., et al. (2008) · Clinical Endocrinology · doi:10.1111/j.1365-2265.2008.03467.x · Cited by 229 · see citing works
Cystic Fibrosis and Transition to Adult Medical Care
Tuchman, L. K., Schwartz, L. A., Sawicki, G. S., & Britto, M. T. (2010) · PEDIATRICS · doi:10.1542/peds.2009-2791 · Cited by 213 · see citing works
Transition to adult care for youth with special health care needs
Kaufman, M. E., Pinzon, J., & Canadian Paediatric Society (2007) · Paediatrics & Child Health · doi:10.1093/pch/12.9.785 · Cited by 194 · see citing works
Self-citationFerris, M., Harward, D. H., Bickford, K., Layton, J. B., Ferris, M. T., Hogan, S. L., Gipson, D. S., McCoy, L. P., & Hooper, S. R. (2012) · Renal Failure · doi:10.3109/0886022x.2012.678171 · Cited by 188 · see citing works
Introduction to Special Issue: Evidence-based Assessment in Pediatric Psychology
Cohen, L. L., Greca, A. M. L., Blount, R. L., Kazak, A. E., Holmbeck, G. N., & Lemanek, K. L. (2006) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsj115 · Cited by 179 · see citing works
Viner, R. (2007) · Archives of Disease in Childhood · doi:10.1136/adc.2006.103721 · Cited by 175 · see citing works
Busse, F. P., Hiermann, P., Galler, A., Stümvoll, M., Wiessner, T., Kiess, W., & Kapellen, T. M. (2006) · Hormone Research in Paediatrics · doi:10.1159/000096583 · Cited by 173 · see citing works
van Staa, A., van der Stege, H. A., Jedeloo, S., Moll, H. A., & Hilberink, S. R. (2010) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2010.07.009 · Cited by 154 · see citing works
McLaughlin, S. E., Diener‐West, M., Indurkhya, A., Rubin, H. R., Heckmann, R., & Boyle, M. (2008) · PEDIATRICS · doi:10.1542/peds.2007-2217 · Cited by 147 · see citing works
TRANSITION OF ADOLESCENTS WITH SPECIAL HEALTH CARE NEEDS: REVIEW AND ANALYSIS OF THE LITERATURE
BETZ, C. L. (2004) · Issues in Comprehensive Pediatric Nursing · doi:10.1080/01460860490497903 · Cited by 141 · see citing works
McPherson, M. E., Thaniel, L., & Minniti, C. P. (2009) · Pediatric Blood & Cancer · doi:10.1002/pbc.21974 · Cited by 130 · see citing works
Hazel, E., Zhang, X., Duffy, C. M., & Campillo, S. (2010) · Pediatric Rheumatology · doi:10.1186/1546-0096-8-2 · Cited by 127 · see citing works
Transition of care from paediatric to adult rheumatology
McDonagh, J. E. R. (2007) · Archives of Disease in Childhood · doi:10.1136/adc.2006.103796 · Cited by 108 · see citing works
Transition: getting it right for young people
Jordan, A. C., & McDonagh, J. E. R. (2006) · Clinical Medicine · doi:10.7861/clinmedicine.6-5-497 · Cited by 107 · see citing works
Role of aldosterone and angiotensin II in insulin resistance: an update
Lastra‐Lastra, G., Sowers, J. R., Restrepo‐Erazo, K., Manrique‐Acevedo, C., & Lastra‐González, G. (2009) · Clinical Endocrinology · doi:10.1111/j.1365-2265.2008.03498.x · Cited by 90 · see citing works
Measuring Children's Decision-Making Involvement Regarding Chronic Illness Management
Miller, V. A., & Harris, D. (2011) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsr097 · Cited by 89 · see citing works
Shaw, K. L., SOUTHWOOD, T. R., McDonagh, J. E. R., et al. (2006) · Child Care Health and Development · doi:10.1111/j.1365-2214.2006.00699.x · Cited by 79 · see citing works
Assessment of Readiness to Transfer to Adult Care for Adolescents with Cystic Fibrosis
Cappelli, M., MacDonald, N. E., & McGrath, P. J. (1989) · Children s Health Care · doi:10.1207/s15326888chc1804_4 · Cited by 69 · see citing works
Annunziato, R. A., Parkar, S., Dugan, C. A., et al. (2009) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsp110 · Cited by 69 · see citing works
Role of Adolescent Development in the Transition Process
Kaufman, M. E. (2006) · Progress in Transplantation · doi:10.1177/152692480601600402 · Cited by 59 · see citing works
Self-citationGrowing Up With Sickle Cell Disease
Smith, G., Lewis, V. R., Whitworth, E., Gold, D. T., & Thornburg, C. D. (2011) · Journal of Pediatric Hematology/Oncology · doi:10.1097/mph.0b013e318211bb2e · Cited by 49 · see citing works
Smoothing Things over: The Transition from Pediatric to Adult Care for Kidney Transplant Recipients
Remorino, R., & Taylor, J. (2006) · Progress in Transplantation · doi:10.1177/152692480601600404 · Cited by 39 · see citing works
Transition from pediatric to adult care after solid organ transplantation
McDonagh, J. E. R., & Kaufman, M. E. (2009) · Current Opinion in Organ Transplantation · doi:10.1097/mot.0b013e32832ffb2a · Cited by 24 · see citing works
Self-citationFrom Pedestrian Safety to Environmental Justice: The Evolution of a Chinatown Community Campaign
Liou, J., & Hirota, S. (2005) · doi:10.36650/nexus3.1_1-12_liouetal · Cited by 16 · see citing works
Malbrunot-Wagner, A. C., Bonnemains, C., Troussier, F., Darviot, E., Chiffoleau, M., Person, C., Urban, T., & Giniès, J.-L. (2009) · Archives de Pédiatrie · doi:10.1016/j.arcped.2008.12.021 · Cited by 14 · see citing works
Dudman, L., Rapley, P., & Wilson, S. (2011) · eSpace (Curtin University) · Cited by 9 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Gravholt, C. H., Andersen, N. H., Conway, G. S., Dekkers, O. M., Geffner, M. E., Klein, K. O., Lin, A. E., Mauras, N., Quigley, C. A., Rubin, K., et al. (2017) · European Journal of Endocrinology · doi:10.1530/eje-17-0430 · Cited by 1,101 · see citing works
Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management
Claahsen - van der Grinten, H. L., Speiser, P. W., Ahmed, S. F., Arlt, W., Auchus, R. J., Falhammar, H., Flück, C. E., Guasti, L., Huebner, A., Kortmann, B. B. M., et al. (2022) · Endocrine Reviews · doi:10.1210/endrev/bnab016 · Cited by 556 · see citing works
Majeed-Ariss, R., Baildam, E., Campbell, M., Chieng, A., Fallon, D., Hall, A., McDonagh, J. E., Stones, S. R., Thomson, W., & Swallow, V. (2015) · Journal of Medical Internet Research · doi:10.2196/jmir.5043 · Cited by 251 · see citing works
Clinical practice guidelines for the care of girls and women with Turner syndrome.
Gravholt, C. H., Andersen, N. H., Christin-Maitre, S., Davis, S. M., Duijnhouwer, A., Gawlik, A., Maciel-Guerra, A. T., Gutmark-Little, I., Fleischer, K., Hong, D., et al. (2024) · European Journal of Endocrinology · doi:10.1093/ejendo/lvae050 · Cited by 224 · see citing works
A systematic review of transition readiness in youth with chronic disease
Varty, M., & Popejoy, L. L. (2020) · Western Journal of Nursing Research · doi:10.1177/0193945919875470 · Cited by 80 · see citing works
- Authors
- Stinson, J., Kohut, S. A., Spiegel, L., White, M., Gill, N., Colbourne, G., Sigurdson, S., Duffy, K. W., Tucker, L., Stringer, E., Hazel, B., Hochman, J., Reiss, J., & Kaufman, M.
- Affiliations
- Hospital for Sick Children (CA)
- Montreal Children's Hospital (CA)
- University of British Columbia (CA)
- Dalhousie University (CA)
- Montreal General Hospital (CA)
- Women's College Hospital (CA)
- University of Florida Health (US)
- Corresponding author
- Stinson, Jennifer
- ORCID
- Venue
- International Journal of Adolescent Medicine and Health
- Publisher
- Walter de Gruyter GmbH
- Published
- 2013-07-06
- Volume
- 26
- Issue
- 2
- Pages
- 159-174
- ISSN
- 0334-0139 (ISSN-L)
- 2191-0278
- OpenAlex
- W2153389222
- Cited by
- 121
- References
- 34
- Citations by year
- 2026: 9 · 2025: 6 · 2024: 7 · 2023: 13 · 2022: 4 · 2021: 10 · 2020: 9 · 2019: 13 · 2018: 14 · 2017: 9 · 2016: 8 · 2015: 9 · 2014: 8 · 2013: 1
- FWCI
- 19.83
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- International Journal of Adolescent Medicine and Health (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
- Keywords
- transition to adult care, transition readiness, adolescents with chronic illness, psychometric validation, reliability and validity, disease management, care transitions
- MeSH terms
- Adolescent, Chronic Disease, Humans, Patient Satisfaction, Transition to Adult Care
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
