Cystic fibrosis: Addressing the transition from pediatric to adult-oriented health care

Patient Preference and Adherence

Volumn 7, Issue , 2013, Pages 1221-1226

  Kreindler, James L ^a   Miller, Victoria A ^a  

^a UNIVERSITY OF PENNSYLVANIA   (United States)

Author keywords

Adolescent; Cystic fibrosis; SMART; Social ecological model of AYA readiness for transition; Transition

Indexed keywords

ADULT ORIENTED CARE; AGE; CONCEPTUAL FRAMEWORK; CYSTIC FIBROSIS; HEALTH CARE; HUMAN; KNOWLEDGE; KNOWLEDGE GAP; MEDICAL LITERATURE; PEDIATRIC BASED CARE; PEDIATRIC PSYCHOSOCIAL PREVENTATIVE HEALTH MODEL; PRACTICE GUIDELINE; REVIEW; SOCIAL ECOLOGICAL MODEL OF AYA READINESS FOR TRANSITION; STUDY SKILLS; TRANSITION TO ADULT CARE;

EID: 84890865437     PISSN: None     EISSN: 1177889X     Source Type: Journal    
DOI: 10.2147/PPA.S37710     Document Type: Review

References (26)

1. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM; Society for Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33(4):309-311.
2. Thomas J, Cook DJ, Brooks D. Chest physical therapy management of patients with cystic fibrosis. A meta-analysis. Am J Respir Crit Care Med. 1995;151(3 Pt 1):846-850.
3. Ramsey BW, Davies J, McElvaney NG, etal. A CFTR potentiator in patients with cystic fibrosis and the G551D mutation. N Engl J Med. 2011;365(18):1663-1672.
4. Sawicki GS, Sellers DE, Robinson WM. High treatment burden in adults with cystic fibrosis: challenges to disease self-management. J Cyst Fibros. 2009;8(2):91-96.
5. Sawicki GS, Ren CL, Konstan MW, etal. Treatment complexity in cystic fibrosis: trends over time and associations with site-specific outcomes. J Cyst Fibros. 2013;12(5):461-467.
6. Gudas LJ, Koocher GP, Wypij D. Perceptions of medical compliance in children and adolescents with cystic fibrosis. J Dev Behav Pediatr. 1991;12(4):236-242.
7. Ricker JH, Delamater AM, Hsu J. Correlates of regimen adherence in cystic fibrosis. J Clin Psychol Med Settings. 1998;5:159-172.
8. Fuligni AJ, Eccles JS. Perceived parent-child relationships and early adolescents' orientation toward peers. Dev Psychol. 1993;29(4):622-632.
9. Coyne JC, Wortman CB, Lehman DR. The other side of support: emotional overinvolvement and miscarried helping. In: Gottieb BH, editor. Marshalling Social Support: Formats, Processes, and Effects. Newbury Park, NY: Sage; 1998.
10. Schwartz LA, Tuchman LK, Hobbie WL, Ginsberg JP. A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37(6):883-895.
11. Bronfenbrenner U, Ceci SJ. Nature-nurture reconceptualized in developmental perspective: a bioecological model. Psychol Rev. 1994;101(4):568-586.
12. McLaughlin SE, Diener-West M, Indurkhya A, Rubin H, Heckmann R, Boyle MP. Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices. Pediatrics. 2008;121(5):e1160-e1166.
13. Conway SP. Transition from paediatric to adult-orientated care for adolescents with cystic fibrosis. Disabil Rehabil. 1998;20(6-7): 209-216.
14. Landau LI. Cystic fibrosis: transition from paediatric to adult physician's care. Thorax. 1995;50(10):1031-1032.
15. Westwood A, Henley L, Willcox P. Transition from paediatric to adult care for persons with cystic fibrosis: patient and parent perspectives. J Paediatr Child Health. 1999;35(5):442-445.
16. Steinkamp G, Ullrich G, Müller C, Fabel H, von der Hardt H. Transition of adult patients with cystic fibrosis from paediatric to adult care-the patients' perspective before and after start-up of an adult clinic. Eur J Med Res. 2001;6(2):85-92.
17. Flume PA, Taylor LA, Anderson DL, Gray S, Turner D. Transition programs in cystic fibrosis centers: perceptions of team members. Pediatr Pulmonol. 2004;37(1):4-7.
18. Flume PA, Anderson DL, Hardy KK, Gray S. Transition programs in cystic fibrosis centers: perceptions of pediatric and adult program directors. Pediatr Pulmonol. 2001;31(6):443-450.
19. Boyle MP, Farukhi Z, Nosky ML. Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Pediatr Pulmonol. 2001;32(6):428-436.
20. Madge S, Bryon M. A model for transition from pediatric to adult care in cystic fibrosis. J Pediatr Nurs. 2002;17(4):283-288.
21. 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(5):557-563.
22. Chaudhry SR, Keaton M, Nasr SZ. Evaluation of a cystic fibrosis transition program from pediatric to adult care. Pediatr Pulmonol. 2013;48(7):658-665.
23. Patton SR, Graham JL, Varlotta L, Holsclaw D Jr. Measuring self-care independence in children with cystic fibrosis: the Self-Care Independence Scale (SCIS). Pediatr Pulmonol. 2003;36(2): 123-130.
24. Kazak AE, Rourke MT, Alderfer MA, Pai A, Reilly AF, Meadows AT. Evidence-based assessment, intervention and psychosocial care in pediatric oncology: a blueprint for comprehensive services across treatment. J Pediatr Psychol. 2007;32(9):1099-1110.
25. Kazak AE, Kassam-Adams N, Schneider S, Zelikovsky N, Alderfer MA, Rourke M. An integrative model of pediatric medical traumatic stress. J Pediatr Psychol. 2006;31(4):343-355.
26. Kazak AE, Cant MC, Jensen MM, etal. Identifying psychosocial risk indicative of subsequent resource use in families of newly diagnosed pediatric oncology patients. J Clin Oncol. 2003;21(17): 3220-3225.