Longitudinal Evaluation of Transition Services (“LETS Study”): Protocol for outcome evaluation
Because of advances in medical treatment, most children with physical disabilities can expect to achieve near normal life spans. Typically, coordinated teams of health care providers in specialized pediatric settings care for these children. As these children reach adulthood, however, the availability of services and expertise changes because the adult health care system has different processes designed to meet their specialized needs. Gaps in continuity of care during the transition from pediatric to adult services, and associated poor health outcomes are well documented. In response, new models of care are being introduced to address the complex process of health care transition. This paper describes a study protocol of a client-centred, prospective, longitudinal, mixed-method evaluation of linked model of health care across the lifespan (the LIFEspan Model), offered by a pediatric rehabilitation centre and an adult rehabilitation centre.
This project will include a process and an outcome evaluation of the LIFEspan Model. The process evaluation will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care through chart audits of pediatric medical records and qualitative interviews with LIFEspan staff. The outcome evaluation will measure the effect of the model on: 1) maintaining continuity within the health care system from pediatric to adult care; and 2) secondary outcomes related to health, well-being, social participation, transition readiness, and health care utilization of youth with cerebral palsy and acquired brain injury. Standardized instruments will include Health Utilities Inventory, Assessment of Life Habits, Arc’s Self-Determination, Assessment of Health-Related Quality of Life, Partners in Health Questionnaire, Social Support Questionnaire, and Self-Efficacy for Managing Chronic Disease.
The LETS study will be original in its undertaking of a prospective examination of outcomes 1-year post-transition, use of multiple comparison groups, and absence of disability-related exclusion criteria ensuring that the transition experiences of varied populations of young people and their families will be represented.
http://www.clinicaltrials.gov, ID NCT00975338
- Strauss D, Shavelle R, Anderson T: Life expectancy of children with cerebral palsy. Pediatr Neurol 1998,18(2):143–149. CrossRef
- Pediatrics AAo: A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002,110(6 Pt 2):1304–1306.
- Rapley P, Davidson P: Enough of the problem: a review of time for health care transition solutions for young adults with a chronic illness. J Clin Nurs 2010,19(3–4):313–323. CrossRef
- Reiss J, Gibson R: Health care transition: destinations unknown. Pediatrics 2002,110(6 Pt 2):1307–1314.
- Scal P: Transition for youth with chronic conditions: primary care physicians’ approaches. Pediatrics 2002,110(6 Pt 2):1315–1321.
- Steinbeck K, Brodie L, Towns S: Transition in chronic illness: who is going where? J Paediatr Child Health 2008,44(9):478–482. CrossRef
- Blum R, Garell D, Hodgman C, Jorissen T, Okinow N, Orr D, Slap G: Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the society for adolescent medicine. J Adolesc Health 1993,14(7):570–576. CrossRef
- Hamdani Y, Jetha A, Norman C: Systems thinking perspectives applied to health care transition for youth with disabilities: a paradigm shift for practice, policy and research. Child Care Health Dev 2011,37(6):806–814. CrossRef
- McDonagh J: Transition of care from paediatric to adult rheumatology. Arch Dis Child 2007,92(9):802–807. CrossRef
- McDonagh JE: Growing up and moving on: transition from pediatric to adult care. Pediatr Transplant 2005,9(3):364–372. CrossRef
- Stevenson C, Pharoah P, Stevenson R: Cerebral palsy–the transition from youth to adulthood. Dev Med Child Neurol 1997,39(5):336–342. CrossRef
- Bowes G, Sinnema G, Suris J, Buhlmann U: Transition health services for youth with disabilities: a global perspective. J Adolesc Health 1995,17(1):23–31. CrossRef
- Young N, Steele C, Fehlings D, Jutai J, Olmsted N, Williams J: Use of health care among adults with chronic and complex physical disabilities of childhood. Disabil Rehabil 2005,27(23):1455–1460. CrossRef
- Young N, McCormick A, Mills W, Barden W, Rumney P, Boydell K, Williams J, et al.: The transition study. Phys Occup Ther Pediatr 2006,26(4):25–45.
- McColl M: Disability studies at the population level: issues of health service utilization. Am J Occup Ther 2005,59(5):516–526. CrossRef
- Lewis-Gary M: Transitioning to adult health care facilities for young adults with a chronic condition. Pediatr Nurs 2001,27(5):521–524.
- Reiss J, Gibson R, Walker L: Health care transition: youth, family, and provider perspectives. Pediatrics 2005,115(1):112–120.
- Rosen D: Between two worlds: bridging the cultures of child health and adult medicine. J Adolesc Health 1995,17(1):10–16. CrossRef
- McDonagh J, Kelly D: The challenges and opportunities for transitional care research. Pediatr Transplant 2010, 14:688–700. CrossRef
- Scal P, Evans T, Blozis S, Okinow N, Blum R: Trends in transition from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health 1999,24(4):259–264. CrossRef
- White P: Success on the road to adulthood. Issues and hurdles for adolescents with disabilities. Rheum Dis Clin North Am 1997,23(3):697–707. CrossRef
- Colver A, Dickinson H: Study protocol: determinants of participation and quality of life of adolescents with cerebral palsy: a longitudinal study (SPARCLE2). BMC Publ Health 2010, 10:280. CrossRef
- Simpson AR: Raising teens: A Synthesis of Research and a Foundation For action. Boston: Center for Health Communication, Harvard School of Public Health; 2001.
- Stevens S, Steele C, Jutai J, Kalnins I, Bortolussi J, Biggar W: Adolescents with physical disabilities: some psychosocial aspects of health. J Adolesc Health 1996,19(2):157–164. CrossRef
- Murphy K: Medical problems in adults with cerebral palsy: case examples. Assist Technol 1999,11(2):97–104. CrossRef
- Newacheck P, Kim S: A national profile of health care utilization and expenditures for children with special health care needs.[erratum appears in arch pediatr adolesc med. 2005 apr;159(4):318]. Arch Pediatr Adolesc Med 2005,159(1):10–17. CrossRef
- Stewart D, Stavness C, King G, Antle B, Law M: A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities. Phys Occup Ther Pediatr 2006,26(4):5–24. CrossRef
- 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(5):439–452. CrossRef
- Betz C, Smith K, Macias K: Testing the transition preparation training program: a randomized controlled trial. Int J Child and Adolescent Health 2011, 3:595–607.
- Craig S, Towns S, Bibby H: Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis. Int J Adolesc Med Health 2007,19(3):333–343. CrossRef
- Hess J, Straub D: Brief report: preliminary findings from a pilot health care transition education intervention for adolescents and young adults with special health care needs. J Pediatr Psychol 2011,36(2):172–178. CrossRef
- Jurasek L, Ray L, Quigley D: Development and implementation of an adolescent epilepsy transition clinic. J Neurosci Nurs 2010,42(4):181–189. CrossRef
- McDonagh J, Southwood T, Shaw K: The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford) 2007,46(1):161–168. CrossRef
- Robertson L, McDonagh J, Southwood T, Shaw K: Growing up and moving on. A multicentre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from paediatric to adult centred care. Ann Rheum Dis 2006,65(1):74–80. CrossRef
- Van Walleghem N, Macdonald C, Dean H: Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care 2008,31(8):1529–1530. CrossRef
- Gall C, Kingsnorth S, Healy H: “Growing Up Ready”: a shared management approach. Phys Occup Ther Pediatr 2006,26(4):47–62.
- Kieckhefer G, Trahms C: Supporting development of children with chronic conditions: from compliance toward shared management. Pediatr Nurs 2000,26(4):354–363.
- Kingsnorth S, Lindsay S, Maxwell J, Tsybina I, Seo H, Macarthur C, Bayley M: Implementation of the LIFEspan model of transition care for youth with childhood onset disabilities. Int J Child & Adolescent Health 2011, 3:547–561.
- Young N: Data on health services utilization and health status for youth and young adults. CAPHC 2004 Annual Meeting: 2004 2004 2004.
- Majnemer A, Limperopoulos C: Importance of outcome determination in pediatric rehabilitation. Dev Med Child Neurol 2002,44(11):773–777. CrossRef
- Kipps S, Bahu T, Ong K, Ackland F, Brown R, Fox C, Griffin N, Knight A, Mann N, Neil H, et al.: Current methods of transfer of young people with type 1 diabetes to adult services. Diabet Med 2002,19(8):649–654. CrossRef
- Pai A, Ostendorf HM: Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: a literature review. Child Health Care 2011,40(1):16–33. CrossRef
- McDonagh J, Kaufman M: Transition from pediatric to adult care after solid organ transplantation. Curr Opin Organ Transplant 2009,14(5):526–532. CrossRef
- de Kraus Camargo O: Systems of care: transition from the bio-psycho-social perspective of the international classification of functioning, disability and health. Child Care Health Dev 2011,37(6):792–799. CrossRef
- Battersby M, Higgins P, Collins J, Reece M, Homwood C, Daniel B: Partners in Health: The development of self-management for SA HealthPlus participants. In The Australian Coordinated Care Trials: Recollections of an Evaluation. Canberra, Australia: Publications Production Unit (Public Affairs, Parliamentary and Access Branch): Commonwealth Department of Health and Ageing; 2002.
- Wehmeyer ML, Kelchner K: The Arc’s self-determination scale. Silver Springs, MD: The Arc of the United States; 1995.
- Lorig K, Ritter P, Stewart A, Sobel D, Brown B, Bandura A, Gonzalez V, Laurent D, Holman H: Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care 2001,39(11):1217–1223. CrossRef
- Noreau L, Fougeyrollas P, Vincent C: The LIFE-H: assessment of the quality of social participation. Technol Disabil 2002,14(3):113–118.
- Zimet GD, Dahlem NW, Zimet SG, Farley GK: The multidimensional scale of perceived social support. J Pers Assess 1988,52(1):30–41. CrossRef
- National health interview survey http://www.statcan.gc.ca/start-debut-eng.html
- Hawthorne G, Richardson J, Osborne R: The Assessment of Quality of Life (AQoL) instrument: a psychometric measure of health-related quality of life. Qual Life Res 1999,8(3):209–224. CrossRef
- Horsman J, Furlong W, Feeny D, Torrance G: The Health Utilities Index (HUI): concepts, measurement, properties and applications. Health Qual Life Outcomes 2003.,1(54):
- Lorig K, Sobel D, Ritter P, Laurent D, Hobbs M: Effect of a self-management program for patients with chronic disease. Eff Clin Pract 2001, 4:256–262.
- Hawthorne G: Assessing utility where short measures are required: development of the short Assessment of Quality of Life-2 (AQoL-2) instrument. Value Health 2009,12(6):948–957. CrossRef
- Hawthorne G, Richardson J, Day NA: A comparison of the Assessment of Quality of Life (AQoL) with four other generic utility instruments. Ann Med 2001,33(5):358–370. CrossRef
- Furlong WJ, Feeny DH, Torrance GW, Barr RD: The Health Utilities Index (HUI®) system for assessing health-related quality of life in clinical studies. Ann Med 2001,33(5):375–384. CrossRef
- Noreau L, Desrosiers J, Robichaud L, Fougeyrollas P, Rochette A, Viscogliosi C: Measuring social participation: reliability of the LIFE-H in older adults with disabilities. Disabil Rehabil 2004,26(6):346–352. CrossRef
- Kroll T, Morris J: Challenges and opportunities in using mixed method designs in rehabilitation research. Arch Phys Med Rehabil 2009,90(11 Suppl):S11-S16. CrossRef
- Binks J, Barden W, Burke T, Young N: What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil 2007,88(8):1064–1073. CrossRef
- Transitions: straight talk.: Augmentative Communication News. vol. 17. 2005, 1–11.
- Liptak G: Health and well being of adults with cerebral palsy. Curr Opin Neurol 2008,21(2):136–142. CrossRef
- Burke R, Spoerri M, Price A, Cardosi A, Flanagan P: Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care. Clin Pediatr (Phila) 2008,47(4):347–354. CrossRef
- The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1471-2431/12/51/prepub
- Longitudinal Evaluation of Transition Services (“LETS Study”): Protocol for outcome evaluation
- Open Access
- Available under Open Access This content is freely available online to anyone, anywhere at any time.
- Online Date
- May 2012
- Online ISSN
- BioMed Central
- Additional Links
- Complex chronic conditions
- Study protocol
- Research methods
- Author Affiliations
- 1. Bloorview Research Institute, Toronto, Canada
- 2. Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada
- 3. Toronto Rehabilitation Institute, Toronto, Canada
- 4. Dalla Lana School of Public Health, University of Toronto, Toronto, Canada
- 5. SickKids Research Institute, Toronto, Canada