Assessment of transition readiness in adolescents and young adults with chronic health conditions

Paul T Jensen, Gabrielle V Paul, Stephanie LaCount, Juan Peng, Charles H Spencer, Gloria C Higgins, Brendan Boyle, Manmohan Kamboj, Christopher Smallwood, Stacy P Ardoin, Paul T Jensen, Gabrielle V Paul, Stephanie LaCount, Juan Peng, Charles H Spencer, Gloria C Higgins, Brendan Boyle, Manmohan Kamboj, Christopher Smallwood, Stacy P Ardoin

Abstract

Background: Transition from pediatric to adult health care is a vulnerable period for adolescents and young adults. Challenges include paucity of validated measures to assess patients' transition readiness. We evaluated the Transition Readiness Assessment Questionnaire (TRAQ) in adolescents and young adults with rheumatic, gastrointestinal, and endocrine disorders. We examined whether baseline TRAQ scores and other demographic variables predicted transition to adult care over a three year follow up period.

Methods: In this descriptive study at a single institution, eighty-nine adolescents at a single pediatric academic medical center completed demographic and medical history surveys and the TRAQ and were followed over 3 years by telephone interview to determine whether they had transitioned to adult subspecialty care. Transition was defined as attending at least one adult subspecialty appointment. Multivariable logistic regression and Cox proportional hazards regression models were used to determine whether TRAQ scores predicted time to transition.

Results: Of the participants, 56% had rheumatic, 21% endocrine, and 23% gastrointestinal conditions. The TRAQ self-management domain score was not significantly associated with age, gender, socioeconomic status, or specialty. The TRAQ self-advocacy score increased with age. Baseline TRAQ scores did not predict transition or time to transition over three years.

Conclusion: In this cohort of adolescents and young adults who were 16 to 23 years of age at enrollment, 48% transitioned to adult care over three years of follow up. Nearly half reported not discussing transition with provider or seeing provider independently for part of visit. Older age but not other demographic variables nor baseline TRAQ score predicted transition or time to transition to an adult subspecialty provider; however, a there was a trend towards shorter time to transition with the highest quartile TRAQ scores.

Keywords: Adolescent; Adult; Chronic health conditions; Transition readiness; Young adult.

Conflict of interest statement

Ethics approval and consent to participate

Institutional Review Board approval was obtained for this study (Nationwide Children’s Hospital IRB10–0026). All participants/legal guardians provided informed consent.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
a shows the cumulative probability of transfer to adult subspecialist over the follow up period for the upper and lower quartiles of TRAQ 1 (self-management) Domain Score. b shows same results for TRAQ 2 Domain (self-advocacy) Score. Abbreviations: TRAQ = Transition Readiness Assessment Questionnaire

References

    1. American Academy of Pediatrics. American Academy of Family Physicians. American College of Physicians. Transitions Clinical Report Authoring Group. Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182–200. doi: 10.1542/peds.2011-0969.
    1. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between pediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–553. doi: 10.1136/adc.2010.202473.
    1. Wood DL, Sawicki GS, Miller MD, et al. The transition readiness assessment questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr. 2014;14(4):415–422. doi: 10.1016/j.acap.2014.03.008.
    1. Katz J, Mamyrova G, Agarwal S, et al. Parents' perception of self-advocacy of children with myositis: An anonymous online survey. Pediatr Rheumatol Online J. 2011;9(1)
    1. Cooley WC. Adolescent health care transition in transition. JAMA Pediatr. 2013;167(7):897–899. doi: 10.1001/jamapediatrics.2013.2578.
    1. McManus MA, Pollack LR, Cooley WC, et al. Current status of transition preparation among youth with special needs in the United States. Pediatrics. 2013;131:1090–1097. doi: 10.1542/peds.2012-3050.
    1. Chira P, Ronis T, Ardoin S, White P. Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada. J Rheumatol. 2014;41(4):768–779. doi: 10.3899/jrheum.130615.
    1. Bollegala N, Brill H, Marshall JK. Resource utilization during pediatric to adult transfer of care in IBD. Crohn's and Colitis. 2013;7(2):55–60. doi: 10.1016/j.crohns.2012.05.010.
    1. Tuchman L, Schwartz M. Health outcomes associated with transitions from pediatric to adult care. Pediatrics. 2013;132(5):847–853. doi: 10.1542/peds.2013-1463.
    1. Pape L, Lämmermühle J, Oldhafer M, Blume C, Weiss R, Ahlenstiel T. Different models of transition to adult care after pediatric kidney transplantation: a comparative study. Pediatr Transplant. 2013;17(6):518–524. doi: 10.1111/petr.12102.
    1. Committee on Pediatric AIDS Transitioning HIV-infected youth into adult health care. Pediatrics. 2013;132:192–197. doi: 10.1542/peds.2013-1073.
    1. Lotstein DS, Ghandour R, Cash A, McGuire E, Strickland B, Newacheck P. Planning for health care transitions: results from the 2005-2006 national survey of children with special health care needs. Pediatrics. 2009;123(1):e145–e152. doi: 10.1542/peds.2008-1298.
    1. Lotstein DS, Seid M, Klingensmith G, et al. Transition from pediatric to adult care for youth diagnosed with type 1 diabetes in adolescence. Pediatrics. 2013;131(4):1062–1070. doi: 10.1542/peds.2012-1450.
    1. Yeung E, Kay J, Roosevelt GE, Brandon M, Yerman AT. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol. 2008;125(1):62–65. doi: 10.1016/j.ijcard.2007.02.023.
    1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002;110(6 Pt 2):1304–1306.
    1. Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the national survey of children with special care needs. Pediatrics. 2005;115(6):1562–1568. doi: 10.1542/peds.2004-1262.
    1. Prior M, McManus M, White P. Measuring the "triple aim" in transition care: a systematic review. Pediatrics. 2014;134:e1648–e1661. doi: 10.1542/peds.2014-1704.
    1. McPheeters M, Davis A, Lounds Taylor J, Flowers Brown R, Potter S, Epstein R. Transition care for children with special health care needs. Agency for Health Care Research and Quality. 2014;14-EHC027-EF.
    1. Klassen AF, Grant C, Barr R, et al. Development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: the TRANSITION-Q. Care, Health and Development: Child; 2014.
    1. Ferris ME, Harward DH, Bickford K, et al. A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TRxANSITION scale. Ren Fail. 2012;34(6):744–753. doi: 10.3109/0886022X.2012.678171.
    1. National Health Care Transition Center. Available at . Updated December 15, 2015.
    1. Sawicki GS, Lukens-Bull K, Yin X, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--transition readiness assessment questionnaire. Pediatric Psychology. 2011;36(2):160–171. doi: 10.1093/jpepsy/jsp128.
    1. Mackie AS, Islam S, Magill-Evans J, et al. Healthcare transition for youth with heart disease: a clinical trial. Heart. 2014;100(14):1113–1118. doi: 10.1136/heartjnl-2014-305748.
    1. Okumura MJ, Ong T, Dawon D, et al. Ten years of improvement innovation in cystic fibrosis care: improving transitions from paediatric to adult cystic fibrosis care: Programme implementation and evaluation. BMJ Qal Saf. 2014;23(Suppl 1):i64–i72. doi: 10.1136/bmjqs-2013-002364.
    1. Zhang LF, Ho JSW, Kennedy SE. A systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease. BMC Peds. 2014;14(4).
    1. Lugasi T, Achille M, Stevenson M. Patients' perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J Adolesc Health. 2011;48:429–440. doi: 10.1016/j.jadohealth.2010.10.016.
    1. Stinson J, Kohut SA, Spiegel L, et al. A systemic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness. Int J Adolesc Med Health. 2014;26(2):159–174. doi: 10.1515/ijamh-2013-0512.
    1. Moynihan M, Saewyc E, Whitehouse S, Paone M, McPherson G. Assessing readiness for transition from paediatric to adult health care: revision and psychometric evaluation of the AM I ON TRAC for adult care questionnaire. J Adv Nurs. 2015;71(6):1324–1335. doi: 10.1111/jan.12617.
    1. Transition Readiness Assessment Questionnaire. Available at: . Updated October 10, 2015.
    1. Stinson J, Spiegel L, Duffy KW, et al. Develoment and testing of the readiness for adult care in rheumatolgoy (RACER) questionnaire for adolescents with rheumatic conditions. J Adolesc Health. 2012;50(2):S89. doi: 10.1016/j.jadohealth.2011.10.234.
    1. Vidal M, Jansa M, Anguita C, et al. Impact of a special therapeutic education programme in patients transferred from a paediatric to an adult diabetes unit. European Diabetes Nursing. 2004;1(1):23–27. doi: 10.1002/edn.5.
    1. Mackie AS, Rempel GR, Islam I, et al. Psychosocial maturity, autonomy, and transition readiness among young adults with congenital heart disease or a heart transplant. Congenit Heart Dis. 2016;11:136–43.

Source: PubMed

3
Prenumerera