Transition from Pediatric to Adult Healthcare Services for Adolescents and Young Adults with Long-term Conditions pp 71-109 | Cite as
Analysis of Self-Management and Transition Readiness Instruments for Clinical Practice
- 2 Citations
- 229 Downloads
Abstract
Nurses are integral members of interdisciplinary healthcare teams providing transition services to adolescents and young adults with long-term conditions and disabilities. Using valid and reliable measures of self-management and transition readiness behaviors can be an important component of effective practice. To identify potential instruments for use in practice, a search was conducted using multiple databases for instruments developed in the last 10 years that addressed these behaviors and had some psychometric evidence. This process yielded both generic (n = 11) and condition-specific (n = 27) instruments. The authors provide analyses of the instruments identified including psychometric properties, strengths, weaknesses, and implications for practice. The most frequent critique of select instruments is the lack of stability evidence (test–retest analysis) which limits healthcare providers’ ability to assess these behaviors over time. The instruments included in this analysis offer nurses and other healthcare providers a variety of choices as they tailor interventions to optimize self-management and transition readiness behaviors for adolescents and young adults with long-term conditions and disabilities.
Keywords
Transition Self-management Instruments Adolescents Young adultsNotes
Acknowledgements
Select instrument table content in this chapter were originally created for the Self-management and Independence section of the Guidelines for the Care of People with Spina Bifida published by the Spina bifida Association. The Spina Bifida Association has given permission for use of the content in the instrument tables for this chapter.
References
- American Diabetes Association. Diabetes self-management profile for flexible insulin regimens: cross-sectional and longitudinal analysis of psychometric properties in a pediatric sample. Diabetes Care. 2005;28:2034–5.Google Scholar
- Beal SJ, Riddle IK, Kichler JC, Duncan A, Houchen A, Casnellie L, Woodward J, Corathers SD. The associations of chronic condition type and individual characteristics with transition readiness. Acad Pediatr. 2016;16:660–7.PubMedGoogle Scholar
- Betz CL, Ferris ME, Woodward JF, Okumura MJ, Jan S, Wood DL. The health care transition research consortium health care transition model: a framework for research and practice. J Pediatr Rehabil Med. 2014;7:3–15.Google Scholar
- Bomba F, Markwart H, Muhlan H, Menrath I, Ernst G, Thyen U, Schmidt S. Adaptation and validation of the German patient activation measure for adolescents with chronic conditions in transitional care: PAM((R)) 13 for adolescents. Res Nurs Health. 2018;41:78–87.PubMedGoogle Scholar
- Bronfenbrenner U. The ecology of human development. Cambridge: Harvard University Press; 1979.Google Scholar
- Cappelli M, Macdonald NE, McGrath PJ. Assessment of readiness to transfer to adult care for adolescents with cystic fibrosis. Child Health Care. 1989;18:218–24.PubMedGoogle Scholar
- Carbone L, Zebrack B, Plegue M, Joshi S, Shellhaas R. Treatment adherence among adolescents with epilepsy: what really matters? Epilepsy Behav. 2013;27:59–63.PubMedPubMedCentralGoogle Scholar
- Cassidy AR, White MT, Demaso DR, Newburger JW, Bellinger DC. Executive function in children and adolescents with critical cyanotic congenital heart disease. J Int Neuropsychol Soc. 2015;21:34–49.PubMedGoogle Scholar
- Cooper H, Braye S, Geyer R. Complexity and interprofessional education. Learn Health Soc Care. 2004;3:179–89.Google Scholar
- Cooper H, Spencer J, Lancaster GA, Titman A, Johnson M, Wheeler SL, Lwin R. Development and psychometric testing of the online Adolescent Diabetes Needs Assessment Tool (ADNAT). J Adv Nurs. 2014;70:454–68.PubMedGoogle Scholar
- Dashiff C, Suzuki-Crumly J, Kracke B, Britton L, Moreland E. Cystic fibrosis-related diabetes in older adolescents: parental support and self-management. J Spec Pediatr Nurs. 2013;18:42–53.PubMedGoogle Scholar
- Diehr P, Hannon PA, Pizacani B, Forehand M, Harris J, Meischke H, Curry SJ, Martin DP, Weaver MR. Using the stages of change model to choose an optimal health marketing target. UW Biostatistics Working Paper Series. Working Paper 361. 2010. http://biostats.bepress.com/uwbiostat/paper361.
- Dudman L, Rapley P, Wilson S. Development of a transition readiness scale for young adults with cystic fibrosis: face and content validity. Neonatal Paediatr Child Health Nurs. 2011;14:9–13.Google Scholar
- Dumas HM, Fragala-Pinkham MA, Haley SM, Ni P, Coster W, Kramer JM, Kao Y-C, Moed R, Ludlow LH. Computer adaptive test performance in children with and without disabilities: prospective field study of the PEDI-CAT. Disabil Rehabil. 2012;34:393–401.PubMedGoogle Scholar
- Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, Hogan SL, Gipson DS, McCoy LP, Hooper SR. 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. 2012;34:744–53.PubMedGoogle Scholar
- Ferris M, Cohen S, Haberman C, Javalkar K, Massengill S, Mahan JD, Kim S, Bickford K, Cantu G, Medeiros M, Phillips A, Ferris MT, Hooper SR. Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx Questionnaire. J Pediatr Nurs. 2015;30:691–9.PubMedGoogle Scholar
- Fredericks EM, Dore-Stites D, Well A, Magee JC, Freed GL, Shieck V, James Lopez M. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant. 2010;14:944–53.PubMedPubMedCentralGoogle Scholar
- Gilleland J, Amaral S, Mee L, Blount R. Getting ready to leave: transition readiness in adolescent kidney transplant recipients. J Pediatr Psychol. 2012;37:85–96.PubMedGoogle Scholar
- Gravelle AM, Paone M, Davidson AG, Chilvers MA. Evaluation of a multidimensional cystic fibrosis transition program: a quality improvement initiative. J Pediatr Nurs. 2015;30:236–43.PubMedPubMedCentralGoogle Scholar
- Guite JW, Logan DE, Simons LE, Blood EA, Kerns RD. Readiness to change in pediatric chronic pain: initial validation of adolescent and parent versions of the Pain Stages of Change Questionnaire. Pain. 2011;152:2301–11.PubMedPubMedCentralGoogle Scholar
- Haley SM, Coster WJ, Dumas HM, Fragala-Pinkham MA, Kramer J, Ni P, Tian F, Kao YC, Moed R, Ludlow LH. Accuracy and precision of the Pediatric Evaluation of Disability Inventory computer-adaptive tests (PEDI-CAT). Dev Med Child Neurol. 2011;53:1100–6.PubMedPubMedCentralGoogle Scholar
- Hanna K, Dimeglio L, Fortenberry J. Brief report: initial testing of scales measuring parent and adolescent perceptions of advantages and disadvantages to adolescents’ assumption of diabetes management. J Pediatr Psychol. 2007;32:245–9.PubMedGoogle Scholar
- Harris MA, Wysocki T, Sadler M, Wilkinson K, Harvey LM, Buckloh LM, Mauras N, White NH. Validation of a structured interview for the assessment of diabetes self-management. Diabetes Care. 2000;23:1301–4.PubMedGoogle Scholar
- Hill-Briggs F. Problem solving in diabetes self-management: a model of chronic illness self-management behavior. Ann Behav Med. 2003;25:182–93.PubMedGoogle Scholar
- Jacobson LA, Tarazi RA, McCurdy MD, Schultz S, Levey E, Mahone EM, Zabel TA. The Kennedy Krieger Independence Scales-Spina Bifida Version: a measure of executive components of self-management. Rehabil Psychol. 2013;58:98–105.PubMedPubMedCentralGoogle Scholar
- Jedeloo S, Van Staa A, Latour JM, Van Exel NJA. Preferences for health care and self-management among Dutch adolescents with chronic conditions: a Q-methodological investigation. Int J Nurs Stud. 2010;47:593–603.PubMedGoogle Scholar
- Jenerette CM, Murdaugh C. Testing the theory of self-care management for sickle cell disease. Res Nurs Health. 2008;31:355–69.PubMedGoogle Scholar
- Jones KE, Jacobson LA, Tarazi RA. The Kennedy Krieger Independence Scales-Sickle Cell Disease: executive components of transition readiness. Rehabil Psychol. 2017;62:249–57.PubMedGoogle Scholar
- Kaugars AS, Kichler JC, Alemzadeh R. Assessing readiness to change the balance of responsibility for managing type 1 diabetes mellitus: adolescent, mother, and father perspectives. Pediatr Diabetes. 2011;12:547–55.PubMedGoogle Scholar
- King PS, Berg CA, Butner J, Butler JM, Wiebe DJ. Longitudinal trajectories of parental involvement in type 1 diabetes and adolescents’ adherence. Health Psychol. 2014;33:424.PubMedGoogle Scholar
- Klassen AF, Grant C, Barr R, Brill H, Kraus De Camargo O, Ronen GM, Samaan MC, Mondal T, Cano SJ, Schlatman A, Tsangaris E, Athale U, Wickert N, Gorter JW. 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. Child Care Health Dev. 2015a;41:547–58.PubMedGoogle Scholar
- Klassen AF, Rosenberg-Yunger ZR, D’Agostino NM, Cano SJ, Barr R, Syed I, Granek L, Greenberg ML, Dix D, Nathan PC. The development of scales to measure childhood cancer survivors’ readiness for transition to long-term follow-up care as adults. Health Expect. 2015b;18:1941–55.PubMedGoogle Scholar
- Koo TK, Li MY. A guideline of selecting and reporting intraclass correlation coefficients for reliability research. J Chiropr Med. 2016;15:155–63.PubMedPubMedCentralGoogle Scholar
- Lewin AB, Lagreca AM, Geffken GR, Williams LB, Duke DC, Storch EA, Silverstein JH. Validity and reliability of an adolescent and parent rating scale of type 1 diabetes adherence behaviors: the Self-Care Inventory (SCI). J Pediatr Psychol. 2009;34:999–1007.PubMedPubMedCentralGoogle Scholar
- Lo F-S, Hsu H-Y, Chen B-H, Lee Y-J, Chen Y-T, Wang R-H. Factors affecting health adaptation of Chinese adolescents with type 1 diabetes: a path model testing. J Child Health Care. 2016;20:5–16.PubMedGoogle Scholar
- McNally K, Rohan J, Pendley JS, Delamater A, Drotar D. Executive functioning, treatment adherence, and glycemic control in children with type 1 diabetes. Diabetes Care. 2010;33:1159–62.PubMedPubMedCentralGoogle Scholar
- Miller VA, Harris D. Measuring children’s decision-making involvement regarding chronic illness management. J Pediatr Psychol. 2012;37:292–306.PubMedGoogle Scholar
- Modi AC, Monahan S, Daniels D, Glauser TA. Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire. Epilepsy Behav. 2010;18:94–9.PubMedPubMedCentralGoogle Scholar
- Modi AC, Pai AL, Hommel KA, Hood KK, Cortina S, Hilliard ME, Guilfoyle SM, Gray WN, Drotar D. Pediatric self-management: a framework for research, practice, and policy. Pediatrics. 2012;129:e473–85.PubMedGoogle Scholar
- 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;71:1324–35.PubMedPubMedCentralGoogle Scholar
- Mulvaney SA, Jaser SS, Rothman RL, Russell WE, Pittel EJ, Lybarger C, Wallston KA. Development and validation of the diabetes adolescent problem solving questionnaire. Patient Educ Couns. 2014;97:96–100.PubMedPubMedCentralGoogle Scholar
- Nazareth M, Hart L, Ferris M, Rak E, Hooper S, Van Tilburg MAL. A parental report of youth transition readiness: the Parent STARx Questionnaire (STARx-P) and re-evaluation of the STARx child report. J Pediatr Nurs. 2018;38:122–6.PubMedGoogle Scholar
- Noar SM, Benac CN, Harris MS. Does tailoring matter? Meta-analytic review of tailored print health behavior change interventions. Psychol Bull. 2007;133:673–93.PubMedGoogle Scholar
- Nunnally JC, Bernstein I. Psychometric theory, McGraw-Hill series in psychology. New York: McGraw-Hill; 1994.Google Scholar
- Pai AL, Gray E, Kurivial K, Ross J, Schoborg D, Goebel J. The Allocation of Treatment Responsibility scale: a novel tool for assessing patient and caregiver management of pediatric medical treatment regimens. Pediatr Transplant. 2010;14:993–9.PubMedGoogle Scholar
- Patton SR, Graham JL, Varlotta L, Holsclaw D. Measuring self-care independence in children with cystic fibrosis: the Self-Care Independence Scale (SCIS). Pediatr Pulmonol. 2003;36:123–30.PubMedGoogle Scholar
- Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care: internists’ perspectives. Pediatrics. 2009;123:417–23.PubMedGoogle Scholar
- Prochaska JO, Diclemente CC. The transtheoretical approach: crossing traditional boundaries of therapy. Malabar: Krieger; 1994.Google Scholar
- Psihogios AM, Kolbuck V, Holmbeck GN. Condition self-management in pediatric spina bifida: a longitudinal investigation of medical adherence, responsibility-sharing, and independence skills. J Pediatr Psychol. 2015;40:790–803.PubMedPubMedCentralGoogle Scholar
- Ryan RM, Deci EL. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol. 2000;55:68–78.PubMedGoogle Scholar
- Ryan P, Sawin KJ. The individual and family self-management theory: background and perspectives on context, process, and outcomes. Nurs Outlook. 2009;57:217–225.e6.PubMedPubMedCentralGoogle Scholar
- Sattoe JN, Hilberink SR, Peeters MA, Van Staa A. ‘Skills for growing up’: supporting autonomy in young people with kidney disease. J Ren Care. 2014;40:131–9.PubMedGoogle Scholar
- Sawicki GS, Garvey KC, Toomey SL, Williams KA, Chen Y, Hargraves JL, Leblanc J, Schuster MA, Finkelstein JA. Development and validation of the Adolescent Assessment of Preparation for Transition: a novel patient experience measure. J Adolesc Health. 2015;57:282–7.PubMedGoogle Scholar
- Sawin KJ. Definitions, frameworks, and theoretical issues in self-management. J Pediatr Rehabil Med. 2017;10(3–4):169–76.Google Scholar
- Sawin KJ, Bellin MH, Roux G, Buran CF, Brei TJ. The experience of self-management in adolescent women with spina bifida. Rehabil Nurs. 2009;34:26–38.PubMedGoogle Scholar
- Sawin KJ, Rauen K, Bartelt T, Wilson A, O’Connor RC, Waring WP III, Orr M. Transitioning adolescents and young adults with spina bifida to adult healthcare: initial findings from a model program. Rehabil Nurs. 2015;40:3–11.PubMedGoogle Scholar
- Sawin KJ, Heffelfinger A, Cashin SE, Brei TJ. The development of the adolescent/young adult self-management and Independence scale II: psychometric data. J Pediatr Rehabil Med. 2018;11:311–22.PubMedGoogle Scholar
- Schilling LS, Grey M, Knafl KA. The concept of self-management of type 1 diabetes in children and adolescents: an evolutionary concept analysis. J Adv Nurs. 2002;37:87–99.PubMedGoogle Scholar
- Schilling LS, Dixon JK, Knafl KA, Lynn MR, Murphy K, Dumser S, Grey M. A new self-report measure of self-management of type 1 diabetes for adolescents. Nurs Res. 2009;58:228–36.PubMedPubMedCentralGoogle Scholar
- Schwartz L, Tuchman L, Hobbie W, Ginsberg J. 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;37:883–95.Google Scholar
- Schwartz LA, Hamilton JL, Brumley LD, Barakat LP, Deatrick JA, Szalda DE, Bevans KB, Tucker CA, Daniel LC, Butler E, Kazak AE, Hobbie WL, Ginsberg JP, Psihogios AM, Ver Hoeve E, Tuchman LK. Development and content validation of the Transition Readiness Inventory item pool for adolescent and young adult survivors of childhood cancer. J Pediatr Psychol. 2017;42:983–94.PubMedPubMedCentralGoogle Scholar
- Spina Bifida Association. Guidelines for the Care of People with Spina Bifida. 2018. https://www.spinabifidaassociation.org/guidelines/
- Taras H, Potts-Datema W. Chronic health conditions and student performance at school. J Sch Health. 2005;75:255–66.PubMedGoogle Scholar
- Tarazi RA, Mahone EM, Zabel TA. Self-care independence in children with neurological disorders: an interactional model of adaptive demands and executive dysfunction. Rehabil Psychol. 2007;52:196.Google Scholar
- Treadwell M, Johnson S, Sisler I, Bitsko M, Gildengorin G, Medina R, Barreda F, Major K, Telfair J, Smith WR. Self-efficacy and readiness for transition from pediatric to adult care in sickle cell disease. Int J Adolesc Med Health. 2016;28:381–8.PubMedGoogle Scholar
- Waters E, Davis E, Ronen GM, Rosenbaum P, Livingston M, Saigal S. Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Dev Med Child Neurol. 2009;51:660–9.PubMedGoogle Scholar
- Weiss KE, Harbeck-Weber C, Zaccariello MJ, Kimondo JN, Harrison TE, Bruce BK. Executive functioning in pediatric chronic pain: do deficits exist? Pain Med. 2017;19:60–7.Google Scholar
- While A, Forbes A, Ullman R, Lewis S, Mathes L, Griffiths P. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care Health Dev. 2004;30:439–52.PubMedGoogle Scholar
- Whittemore R, Jaser S, Guo J, Grey M. A conceptual model of childhood adaptation to type 1 diabetes. Nurs Outlook. 2010;58:242–51.PubMedPubMedCentralGoogle Scholar
- Wiener L, Battles H, Ryder C, Zobel M. Transition from a pediatric HIV intramural clinical research program to adolescent and adult community-based care services: assessing transition readiness. Soc Work Health Care. 2007;46:1–19.PubMedPubMedCentralGoogle Scholar
- Williams TS, Sherman EMS, Dunseith C, Mah JK, Blackman M, Latter J, Mohamed I, Slick DJ, Thornton N. Measurement of medical self-management and transition readiness among Canadian adolescents with special health care needs. Int J Child Adolesc Health. 2010;3:527–35.Google Scholar
- Wood DL, Sawicki GS, Miller MD, Smotherman C, Lukens-Bull K, Livingood WC, Ferris M, Kraemer DF. The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr. 2014;14:415–22.PubMedGoogle Scholar
- Wysocki T, Gavin L. Paternal involvement in the management of pediatric chronic diseases: associations with adherence, quality of life, and health status. J Pediatr Psychol. 2005;31:501–11.PubMedGoogle Scholar
- Wysocki T, Buckloh LM, Antal H, Lochrie A, Taylor A. Validation of a self-report version of the diabetes self-management profile. Pediatr Diabetes. 2012;13:438–43.PubMedGoogle Scholar