Theories of self-care management, particularly the development of self-efficacy or confidence in one’s ability to manage health-related goals, tasks, and challenges may provide a useful framework for developing programs to improve transition from pediatric to adult care for youth and young adults with sickle cell disease (SCD).
The aim of this study was to evaluate the hypothesis stating that ratings of self-efficacy is positively associated with self-ratings of transition readiness.
A total of 113 individuals with SCD aged 14–26 years at two distinct sites of care were recruited for the study.
Materials and methods:
Participants completed the Transition Intervention Program Readiness for Transition (TIP-RFT) assessment, the Sickle Cell Self-Efficacy Scale and the Sickle Cell Stress –Adolescent scale.
In multivariate regression models, self-efficacy was positively associated with scores on the total TIP-RFT and on the Education/Vocation Planning and Independent Living Skills scales. Older age was independently associated with higher scores on the Independent Living Skills scale and higher stress levels were independently associated with lower scores on Education/Vocation Planning scale.
The TIP-RFT assessment, along with measures of self-efficacy and stress, appear to be useful measures of overall transition readiness for youth and young adults with SCD. Future studies should evaluate whether self-management skill development and health outcomes are indeed affected by programs to improve readiness for transition from pediatric to adult care.
This publication was made possible by grants from the Health Resources and Services Administration (HRSA) Sickle Cell Disease Treatment Demonstration Project, Grant Numbers U1EMC16492 and U1EMC27862. Further support came from the National Center for Advancing Translational Sciences, National Institutes of Health (NIH), through UCSF-CTSI Grant Number UL1 TR000004. Support for Richmond, VA staff was provided by Grant Numbers 1U54HL090516, 1U10HL083732, and R18HL112737 from the National Heart, Lung, and Blood Institute, NIH, by a grant from the Richmond Memorial Health Foundation, entitled Program for Child to Adult Transition of Sickle Cell Care. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of HRSA, NIH, or the Richmond Memorial Health Foundation.
1. Sharma N, O’Hare K, Antonelli RC, Sawicki GS. Transition care: future directions in education, health policy, and outcomes research. Acad Pediatr 2014;14:120–7.10.1016/j.acap.2013.11.007Search in Google Scholar PubMed PubMed Central
2. Schwartz LA, Brumley LD, Tuchman LK, Barakat LP, Hobbie WL, et al. Stakeholder validation of a model of readiness for transition to adult care. JAMA Pediatr 2013;167:939–46.10.1001/jamapediatrics.2013.2223Search in Google Scholar PubMed PubMed Central
3. Betz CL, Lobo ML, Nehring WM, Bui K. Voices not heard: a systematic review of adolescents’ and emerging adults’ perspectives of health care transition. Nurs Outlook 2013;61:311–36.10.1016/j.outlook.2013.01.008Search in Google Scholar PubMed
4. 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/jsp128Search in Google Scholar PubMed PubMed Central
5. Sawicki GS, Kelemen S, Weitzman ER. Ready, set, stop: mismatch between self-care beliefs, transition readiness skills, and transition planning among adolescents, young adults, and parents. Clin Pediatr (Phila) 2014;53:1062–8.10.1177/0009922814541169Search in Google Scholar PubMed PubMed Central
6. Wang G, McGrath BB, Watts C. Health care transitions among youth with disabilities or special health care needs: an ecological approach. J Pediatr Nurs 2010;25:505–50.10.1016/j.pedn.2009.07.003Search in Google Scholar PubMed PubMed Central
7. Rehm RS, Fuentes-Afflick E, Fisher LT, Chesla CA. Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability. ANS Adv Nurs Sci 2012;35:E57–72.10.1097/ANS.0b013e3182626180Search in Google Scholar PubMed PubMed Central
8. Jenerette C, Valrie C. The influence of maternal behaviors during childhood on self-efficacy in individuals with sickle cell disease. J Fam Nurs 2010;16:422–34.10.1177/1074840710385000Search in Google Scholar PubMed
10. Luszczynska A, Schwarzer R. Social cognitive theory, 2nd ed. Maidenhead: Open University Press, 2005.Search in Google Scholar
12. Clay OJ, Telfair J. Evaluation of a disease-specific self-efficacy instrument in adolescents with sickle cell disease and its relationship to adjustment. Child Neuropsychol 2007;13:188–203.10.1080/09297040600770746Search in Google Scholar
13. Edwards R, Telfair J, Cecil H, Lenoci J. Reliability and validity of a self-efficacy instrument specific to sickle cell disease. Behav Res Ther 2000;38:951–63.10.1016/S0005-7967(99)00140-0Search in Google Scholar
14. Adegbola M. Spirituality, self-efficacy, and quality of life among adults with sickle cell disease. South Online J Nurs Res 2011;11:5.Search in Google Scholar
15. Wojciechowski EA, Hurtig A, Dorn L. A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: a need for case management services. J Pediatr Nurs 2002;17:18–27.10.1053/jpdn.2002.30930Search in Google Scholar PubMed
16. Stinson J, Kohut SA, Spiegel L, White M, Gill N, et al. A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness. Int J Adolesc Med Health 2014;26:159–74.10.1515/ijamh-2013-0512Search in Google Scholar PubMed
17. Treadwell M, Johnson S, Sisler I, Bitsko M, Gildengorin G, et al. Development of a sickle cell disease readiness for transition assessment. Manuscript submitted for publication, 2015.10.1515/ijamh-2015-0010Search in Google Scholar PubMed
19. Smith WR, Godder K, Sisler I, Smith V, Casper R, et al. Readiness for transition from pediatric sickle cell care: exploratory analyses of domains of readiness and total scores. Blood 2010;116:1066.10.1182/blood.V116.21.2576.2576Search in Google Scholar
20. Smith WR, McClish DK, Dahman DA, Levenson JL, Aisiku IP, et al. Daily home opioid use in adults with sickle cell disease: The PiSCES project. J Opioid Manag Manuscript accepted for publication, 2015.Search in Google Scholar
21. StataCorp. Stata Statistical Software: Release 13. College Station, TX: StataCorp LP, 2013.Search in Google Scholar
22. Anie KA, Telfair J. Multi-site study of transition in adolescents with sickle cell disease in the United Kingdom and the United States. Int J Adolesc Med Health 2005;17:169–78.10.1515/IJAMH.2005.17.2.169Search in Google Scholar
23. Edwards R, Telfair J, Cecil H, Lenoci J. Self-efficacy as a predictor of adult adjustment to sickle cell disease: one-year outcomes. Psychosom Med 2001;63:850–8.10.1097/00006842-200109000-00020Search in Google Scholar PubMed
24. Monaghan M, Hilliard M, Sweenie R, Riekert K. Transition readiness in adolescents and emerging adults with diabetes: the role of patient-provider communication. Curr Diab Rep 2013;13:900–8.10.1007/s11892-013-0420-xSearch in Google Scholar PubMed PubMed Central
25. Sobota A, Akinlonu A, Champigny M, Eldridge M, McMahon L, et al. Self-reported transition readiness among young adults with sickle cell disease. J Pediatr Hematol Oncol 2014;36:389–94.10.1097/MPH.0000000000000110Search in Google Scholar PubMed PubMed Central
26. Gil KM, Carson JW, Porter LS, Ready J, Valrie C, et al. Daily stress and mood and their association with pain, health-care use, and school activity in adolescents with sickle cell disease. J Pediatr Psychol 2003;28:363–73.10.1093/jpepsy/jsg026Search in Google Scholar PubMed
28. Hogan AM, Pit-ten Cate IM, Vargha-Khadem F, Prengler M, Kirkham FJ. Physiological correlates of intellectual function in children with sickle cell disease: hypoxaemia, hyperaemia and brain infarction. Dev Sci 2006;9:379–87.10.1111/j.1467-7687.2006.00503.xSearch in Google Scholar PubMed
29. Wills KE, Nelson SC, Hennessy J, Nwaneri MO, Miskowiec J, et al. Transition planning for youth with sickle cell disease: embedding neuropsychological assessment into comprehensive care. Pediatrics 2010;126(Suppl 3):S151–9.10.1542/peds.2010-1466JSearch in Google Scholar PubMed
30. Schwartz LA, Daniel LC, Brumley LD, Barakat LP, Wesley KM, et al. Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development. J Pediatr Psychol 2014;39:588–601.10.1093/jpepsy/jsu028Search in Google Scholar PubMed PubMed Central
31. Derlega VJ, Janda LH, Miranda J, Chen IA, Goodman BM, 3rd, et al. How patients’ self-disclosure about sickle cell pain episodes to significant others relates to living with sickle cell disease. Pain Med 2014;15:1496–507.10.1111/pme.12535Search in Google Scholar PubMed
32. Taylor LE, Stotts NA, Humphreys J, Treadwell MJ, Miaskowski C. A biopsychosocial-spiritual model of chronic pain in adults with sickle cell disease. Pain Manag Nurs 2013;14:287–301.10.1016/j.pmn.2011.06.003Search in Google Scholar PubMed PubMed Central
33. Blinder M, Vekeman F, Sasane M, Trahey A, Paley C, et al. Age-related emergency department reliance and healthcare resource utilization in patients with sickle cell disease. 54th ASH Annual Meeting and Exposition; Atlanta, GA, 2012.10.1182/blood.V120.21.475.475Search in Google Scholar
34. Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a self-management program on patients with chronic disease. Eff Clin Pract 2001;4:256–62.Search in Google Scholar
35. Lorig KR, Ritter P, Stewart AL, Sobel DS, Brown BW, Jr., et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care 2001;39:1217–23.10.1097/00005650-200111000-00008Search in Google Scholar PubMed
36. Bensen R, Steidtmann D, Vaks Y. A triple aim approach to transition from pediatric to adult health care for youth with special health care needs. Lucille Packard Foundation for Children’s Health Issue Brief 2014. Accessed 2015 Apr 02. Available at: www.lpfch-cshcn.org.Search in Google Scholar
37. Morton M, Montgomery P. Youth empowerment programs for improving self-efficacy and self-esteem of adolescents. Campbell Systematic Reviews 2011; 7. Accessed 2015 Apr 02. Available at: www.campbellcollaboration.org.10.4073/csr.2011.5Search in Google Scholar
38. 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/jsj115Search in Google Scholar PubMed PubMed Central
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