Longitudinal Evaluation of Transition Services ("LETS Study"): protocol for outcome evaluation

Irina Tsybina, Shauna Kingsnorth, Joanne Maxwell, Mark Bayley, Sally Lindsay, Patricia McKeever, Angela Colantonio, Yani Hamdani, Helen Healy, Colin Macarthur, Irina Tsybina, Shauna Kingsnorth, Joanne Maxwell, Mark Bayley, Sally Lindsay, Patricia McKeever, Angela Colantonio, Yani Hamdani, Helen Healy, Colin Macarthur

Abstract

Background: 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.

Method: 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.

Discussion: 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.

Trial registration: http://www.clinicaltrials.gov, ID NCT00975338.

References

    1. Strauss D, Shavelle R, Anderson T. Life expectancy of children with cerebral palsy. Pediatr Neurol. 1998;18(2):143–149. doi: 10.1016/S0887-8994(97)00172-0.
    1. 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.
    1. 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.
    1. Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics. 2002;110(6 Pt 2):1307–1314.
    1. Scal P. Transition for youth with chronic conditions: primary care physicians’ approaches. Pediatrics. 2002;110(6 Pt 2):1315–1321.
    1. Steinbeck K, Brodie L, Towns S. Transition in chronic illness: who is going where? J Paediatr Child Health. 2008;44(9):478–482. doi: 10.1111/j.1440-1754.2008.01321.x.
    1. 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. doi: 10.1016/1054-139X(93)90143-D.
    1. 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. doi: 10.1111/j.1365-2214.2011.01313.x.
    1. McDonagh J. Transition of care from paediatric to adult rheumatology. Arch Dis Child. 2007;92(9):802–807. doi: 10.1136/adc.2006.103796.
    1. McDonagh JE. Growing up and moving on: transition from pediatric to adult care. Pediatr Transplant. 2005;9(3):364–372. doi: 10.1111/j.1399-3046.2004.00287.x.
    1. Stevenson C, Pharoah P, Stevenson R. Cerebral palsy–the transition from youth to adulthood. Dev Med Child Neurol. 1997;39(5):336–342.
    1. 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. doi: 10.1016/1054-139X(95)00076-5.
    1. 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. doi: 10.1080/00222930500218946.
    1. 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.
    1. McColl M. Disability studies at the population level: issues of health service utilization. Am J Occup Ther. 2005;59(5):516–526. doi: 10.5014/ajot.59.5.516.
    1. Lewis-Gary M. Transitioning to adult health care facilities for young adults with a chronic condition. Pediatr Nurs. 2001;27(5):521–524.
    1. Reiss J, Gibson R, Walker L. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115(1):112–120.
    1. Rosen D. Between two worlds: bridging the cultures of child health and adult medicine. J Adolesc Health. 1995;17(1):10–16. doi: 10.1016/1054-139X(95)00077-6.
    1. McDonagh J, Kelly D. The challenges and opportunities for transitional care research. Pediatr Transplant. 2010;14:688–700. doi: 10.1111/j.1399-3046.2010.01343.x.
    1. 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. doi: 10.1016/S1054-139X(98)00127-X.
    1. 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. doi: 10.1016/S0889-857X(05)70353-7.
    1. 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. doi: 10.1186/1471-2458-10-280.
    1. Simpson AR. Raising teens: A Synthesis of Research and a Foundation For action. Boston: Center for Health Communication, Harvard School of Public Health; 2001.
    1. 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. doi: 10.1016/1054-139X(96)00027-4.
    1. Murphy K. Medical problems in adults with cerebral palsy: case examples. Assist Technol. 1999;11(2):97–104. doi: 10.1080/10400435.1999.10131994.
    1. 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. doi: 10.1001/archpedi.159.1.10.
    1. 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. doi: 10.1080/J006v26n04_02.
    1. 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. doi: 10.1111/j.1365-2214.2004.00440.x.
    1. 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.
    1. 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.
    1. 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. doi: 10.1093/jpepsy/jsq091.
    1. Jurasek L, Ray L, Quigley D. Development and implementation of an adolescent epilepsy transition clinic. J Neurosci Nurs. 2010;42(4):181–189. doi: 10.1097/JNN.0b013e3181e26be6.
    1. 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. doi: 10.1093/rheumatology/kel198.
    1. 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. doi: 10.1136/ard.2004.032292.
    1. 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. doi: 10.2337/dc07-2247.
    1. Gall C, Kingsnorth S, Healy H. “Growing Up Ready”: a shared management approach. Phys Occup Ther Pediatr. 2006;26(4):47–62.
    1. Kieckhefer G, Trahms C. Supporting development of children with chronic conditions: from compliance toward shared management. Pediatr Nurs. 2000;26(4):354–363.
    1. 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.
    1. Young N. Data on health services utilization and health status for youth and young adults. CAPHC 2004 Annual Meeting: 2004 2004. 2004.
    1. Majnemer A, Limperopoulos C. Importance of outcome determination in pediatric rehabilitation. Dev Med Child Neurol. 2002;44(11):773–777.
    1. 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. doi: 10.1046/j.1464-5491.2002.00757.x.
    1. 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. doi: 10.1080/02739615.2011.537934.
    1. McDonagh J, Kaufman M. Transition from pediatric to adult care after solid organ transplantation. Curr Opin Organ Transplant. 2009;14(5):526–532. doi: 10.1097/MOT.0b013e32832ffb2a.
    1. 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. doi: 10.1111/j.1365-2214.2011.01323.x.
    1. Battersby M, Higgins P, Collins J, Reece M, Homwood C, Daniel B. 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. Partners in Health: The development of self-management for SA HealthPlus participants.
    1. Wehmeyer ML, Kelchner K. The Arc’s self-determination scale. Silver Springs, MD: The Arc of the United States; 1995.
    1. 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. doi: 10.1097/00005650-200111000-00008.
    1. Noreau L, Fougeyrollas P, Vincent C. The LIFE-H: assessment of the quality of social participation. Technol Disabil. 2002;14(3):113–118.
    1. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J Pers Assess. 1988;52(1):30–41. doi: 10.1207/s15327752jpa5201_2.
    1. National health interview survey. .
    1. 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. doi: 10.1023/A:1008815005736.
    1. 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)
    1. 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.
    1. 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. doi: 10.1111/j.1524-4733.2009.00526.x.
    1. 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. doi: 10.3109/07853890109002090.
    1. 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. doi: 10.3109/07853890109002092.
    1. 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. doi: 10.1080/09638280410001658649.
    1. 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.
    1. 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. doi: 10.1016/j.apmr.2007.04.018.
    1. Transitions: straight talk. Augmentative Communication News. vol. 17. 2005. pp. 1–11.
    1. Liptak G. Health and well being of adults with cerebral palsy. Curr Opin Neurol. 2008;21(2):136–142. doi: 10.1097/WCO.0b013e3282f6a499.
    1. 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. doi: 10.1177/0009922807310938.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe