Assessment of Transition Readiness in Adolescents and Young Adults with Heart Disease

Journal of Pediatrics

Volumn 167, Issue 6, 2015, Pages 1233-1238

  Uzark, Karen ^a,b   Smith, Cynthia ^a   Donohue, Janet ^a   Yu, Sunkyung ^a   Afton, Katherine ^a   Norris, Mark ^a   Cotts, Timothy ^a  

^a UNIVERSITY OF MICHIGAN   (United States)

^b UNIVERSITY OF MICHIGAN MEDICAL SCHOOL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; ATTITUDE TO HEALTH; CROSS-SECTIONAL STUDY; FEMALE; HEART DISEASES; HEART TRANSPLANTATION; HUMAN; MALE; QUALITY OF LIFE; QUESTIONNAIRE; SELF CARE; SELF CONCEPT; TRANSITION TO ADULT CARE; YOUNG ADULT;

ADOLESCENT; ADULT; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEART DISEASES; HEART TRANSPLANTATION; HUMANS; MALE; QUALITY OF LIFE; SELF CARE; SELF EFFICACY; SURVEYS AND QUESTIONNAIRES; TRANSITION TO ADULT CARE; YOUNG ADULT;

EID: 85027929735     PISSN: 00223476     EISSN: 10976833     Source Type: Journal    
DOI: 10.1016/j.jpeds.2015.07.043     Document Type: Article

References (31)

1. Moons, P., Bovijn, L., Budts, W., Belmans, A., Gewillig, M., Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 122 (2010), 2264–2272.
2. Marelli, A.J., Ionescu-Ittu, R., Mackie, A.S., Guo, L., Dendukuri, N., Kaouache, M., Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation 130 (2014), 749–756.
3. Yeung, E., Kay, J., Roosevelt, G.E., Brandon, M., Yetman, A.T., Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 125 (2008), 62–65.
4. Moons, P., Hilderson, D., Van Deyk, K., Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs 7 (2008), 259–263.
5. Gurvitz, M.Z., Inkelas, M., Lee, M., Stout, K., Escarce, J., Chang, R.K., Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol 49 (2007), 875–882.
6. Reid, G.J., Irvine, M.J., McCrindle, B.W., Sananes, R., Ritvo, P.G., Siu, S.C., et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 113 (2004), e197–e205.
7. Van Deyk, K., Pelgrims, E., Troost, E., Goossens, E., Budts, W., Gewellig, M., et al. Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol 106 (2010), 1803–1807.
8. Moons, P., DeVolder, E., Budts, W., DeGeest, S., Elen, J., Waeytens, K., et al. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 86 (2001), 74–80.
9. Knauth, A., Verstapen, A., Reiss, J., Webb, G.D., Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 24 (2006), 619–629.
10. American Academy of Pediatrics American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transition for young adults with special health care needs. Pediatrics 110 (2002), 1304–1306.
11. Sable, C., Foster, E., Uzark, K., Bjornsen, K., Canobbio, M.M., Connolly, H.M., et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 123 (2011), 1454–1485.
12. Varni, J.W., Burwinkle, T.M., Seid, M., Skarr, D., The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 3 (2003), 329–341.
13. Ferris, M.E., Cohen, S., Haberman, C., Javalkar, K., Massengill, S., Mahan, J.D., et al. Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire. J Pediatr Nurs, 2015 Jul 22. pii: S0882-5963(15)00153-0. doi: 10.1016/j.pedn.2015.05.009. [Epub ahead of print].
14. Ferris, M.E., Harward, D.H., Bickford, K., Layton, J.B., Ferris, M.T., Hogan, S.L., et al. A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TR(x)ANSITION scale. Ren Fail 34 (2012), 744–753.
15. Uzark, K., Smith, C., Yu, S., Donohue, J., Afton, K., Norris, M.D., et al. Transition readiness assessment in adolescents and young adults with heart disease: can we improve the outcome?. Circulation, 130, 2014 A1292 (abstract).
16. Uzark, K., Jones, K., Burwinkle, T.M., Varni, J.W., The Pediatric Quality of Life Inventory in Children with Heart Disease. Prog Pediatr Cardiol 18 (2003), 243–250.
17. Hinze, A., Kutty, S., Sayles, H., Sandene, E.K., Meza, J., Kugler, J.D., Reproductive and contraceptive counseling received by adult women with congenital heart disease: a risk-based analysis. Congenit Heart Dis 8 (2013), 20–31.
18. Suris, J.C., Michaud, P.A., Akre, C., Sawyer, S.M., Health risk behaviors in adolescents with chronic conditions. Pediatrics 122 (2008), e1113–e1118.
19. Swan, L., Hillis, W.S., Exercise prescription in adults with congenital heart disease: a long way to go. Heart 83 (2000), 685–687.
20. Lunt, D., Briffa, T., Briffa, N.K., Ramsay, J., Physical activity levels of adolescents with congenital heart disease. Aust J Physiother 49 (2003), 43–50.
21. Tong, E., Kools, S., Health care transitions for adolescents with congenital heart disease: patient and family perspectives. Nurs Clin North Am 39 (2004), 727–740.
22. Ronning, H., Nielsen, N.E., Swahn, E., Stromberg, A., Educational needs in adults with congenitally malformed hearts. Cardiol Young 18 (2008), 473–479.
23. Clarizia, N.A., Chahal, N., Manlhiot, C., Kilburn, J., Redington, A.N., McCrindle, B.W., Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent, and health care provider. Can J Cardiol 25 (2009), e317–e322.
24. Sawicki, G.S., Lukens-Bull, K., Yin, X., Demars, N., Huang, I.C., Livingood, W., et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ-Transition Readniess Assessment Questionnaire. J Pediatr Psychol 36 (2011), 160–171.
25. Bar-Mor, G., Bar-Tal, Y., Krulik, T., Zeevi, B., Self-efficacy and physical activity in adolescents with trivial, mild, or moderate congenital cardiac malformations. Cardiol Young 10 (2000), 561–566.
26. Dahan-Oliel, N., Majnemer, A., Mazer, B., Quality of life of adolescents and young adults born at high risk. Phys Occup Ther Pediatr 31 (2011), 362–389.
27. Ong, L., Nolan, R.P., Irvine, J., Kovacs, A.H., Parental overprotection and heart-focused anxiety in adults with congenital heart disease. Int J Behav Med 18 (2011), 260–267.
28. Uzark, K., Jones, K., Slusher, J., Limbers, C., Burwinkle, T., Varni, J., Quality of life in children with heart disease as perceived by children and parents. Pediatrics 121 (2008), e1060–e1067.
29. Lane, D.A., Lip, G.Y.H., Millane, T.A., Quality of life in adults with congenital heart disease. Heart 88 (2002), 71–75.
30. Mussatto, K.A., Sawin, K.J., Schiffman, R., Leske, J., Simpson, P., Marino, B.S., The importance of self-perceptions to psychosocial adjustment in adolescents with heart disease. J Pediatr Health Care 28 (2014), 251–261.
31. Dupont, A., Wheeler, J., Herndon, J.E. II, Coan, A., Zafar, S.Y., Hood, L., et al. Use of tablet personal computers for sensitive patient-reported information. J Support Oncol 7 (2009), 91–97.