Version of Record online: 30 JUL 2008
Copyright © 2008 by the American College of Rheumatology
Arthritis Care & Research
Volume 59, Issue 8, pages 1200–1201, 15 August 2008
How to Cite
Stinson, J. N., Stevens, B. J., Yeung, R. S. M., Toomey, P. C., Kagan, S., Duffy, C. M., Huber, A., Malleson, P., McGrath, P. J. and Feldman, B. M. (2008), Reply. Arthritis & Rheumatism, 59: 1200–1201. doi: 10.1002/art.23922
- Issue online: 30 JUL 2008
- Version of Record online: 30 JUL 2008
To the Editors:
We would like to thank McDonagh and Hackett for their thoughtful comments regarding our article on the self-management needs of adolescents with arthritis. In particular, we would like to thank them for drawing attention to the interrelationship between transitional care and self-management during the adolescent period. McDonagh and her colleagues are recognized for their contributions in moving the field of transitional care forward, particularly in regard to the development and testing of the first transitional care program in the UK for adolescents with arthritis (1–4). We agree that transitional care is a multidimensional process that requires a coordinated individualized transitional plan of care. Moreover, transitional care is implicitly based on the need to help young people actualize their emerging capacity for self-management (5).
Self-management and transitional care are intertwined processes and both have the key elements of promoting self-management skills (communication, assertiveness, decision-making, self-care, self-advocacy), as well as providing adolescent-focused information and meaningful social support. However, we would suggest that self-management is a broader concept that extends beyond the skills, information, and social support needed for successful transition to adult health care. We would also assert that the transition to adult care approach is generally (and perhaps wrongly) conceptualized as a much narrower process. For example, social support, stress management, and problem solving are much broader skills when considered from a self-management perspective rather than a transition to adult care perspective.
Gerber et al recently explored the feasibility of an Internet-based transitional care program for adolescents with diabetes (6). This program was adapted from an existing educational program and consists of disease-related knowledge, goal-setting exercises with individualized feedback, role-playing, group discussions, empowerment activities, and communication skills training designed to improve interactions with health care professionals. In contrast, the goal of our Internet-based self-management program is to increase disease-specific knowledge; improve coping, self-efficacy, and adherence to prescribed management; decrease pain, fatigue, and stress; and ultimately improve health-related quality of life in adolescents with arthritis. This program consists of 12 modules for adolescents and 2 modules for parents to help them let go and empower their teenagers to take control over managing their arthritis. The adolescent modules include understanding their arthritis and how it is diagnosed, 7 treatment-related modules, a module on healthy lifestyle, and a section on looking ahead that deals with transitioning to adult health care and adulthood.
We are grateful to McDonagh and Hackett for challenging thought outside of the rheumatology box and for encouraging learning from other disciplines by taking a noncategorical approach to chronic illness during childhood and adolescence. We agree that we should draw on the work that already exists in order to build the critical evidence base upon which to carve out future research in this area. Self-management practices in young people build on existing frameworks of adherence, transition to adult health care, and developmentally appropriate health care (5). However, as McDonagh points out, the literature evaluating the effectiveness of transitional care interventions, although growing, is quite limited (7). There is some evidence that educational interventions for the self-management of chronic health conditions in children are effective in certain illnesses. For example, Guevara et al conducted a systematic review and meta-analysis of 32 randomized controlled trials of educational interventions for self-management of asthma in children and adolescents (8). These programs improved lung function and self-efficacy and reduced morbidity and utilization of health care resources.
The use of e-health technologies for delivery of interventions for self-management and/or transitional care is likewise very limited. We recently conducted a systematic review to critically appraise the research evidence on the effectiveness of Internet-based self-management interventions for children and adolescents with chronic health conditions. We identified only 4 randomized controlled trials of Internet-based self-management interventions published in peer review journals that were of adequate methodologic quality. The main conclusion was that there was some evidence that Internet interventions worked in 3 out of the 4 studies (9–11). Although interventions and outcomes varied greatly between studies, positive effects were found in improvement of symptoms, functioning, and overall self-management in selected populations (recurrent pain, asthma, and obesity).
Although this evidence base is a crucial beginning, more research is needed to determine the effectiveness of these interventions across health conditions in children and youth. In addition, given the paucity of research in this area, we still do not know the best way to present self-management or transitional care programs on the Internet, although some basic standards are developing (12). For example, most of the programs use a self-help format, in which the treatment protocol is presented in modular fashion on the Internet and the patient works through it more or less independently. Most programs also use minimal therapist contact through e-mail or telephone communication to support and keep participants engaged in these programs. Despite this contact, several of these interventions were plagued with relatively high dropout rates (6, 9, 11). The sustainability of these programs in terms of cost-effectiveness of technology-based interventions compared with usual treatment requires evaluation.
McDonagh and Hackett mention the use of other novel e-health technologies to help children and youth monitor and/or manage chronic health conditions. Clearly, this is a burgeoning area that extends beyond the Internet to include gaming (13), CD-ROMs, personal digital assistants, mobile phones (short-message service and/or text-messaging), and synchronous videoconferencing (12). For example, McDonagh and Hackett cited the use of Sweet Talk, which is a motivational push support network using daily automated text-messaging through a mobile phone to reinforce clinic-based self-management goals in teens with diabetes (14). Although Sweet Talk alone did not improve glycemic control, its use was associated with improvements in psychological measures predictive of adherence and may be an effective means of providing support. These are the types of interventions that need to be explored further to see whether they can keep young people with chronic illnesses engaged in self-care during the difficult period of adolescence and the transition to adulthood.
In summary, similar to transitional care (7), there is an evolving evidence base supporting the need for, the process, and positive outcomes of self-management interventions for children and youth with chronic health conditions (5, 8–11). Both of these areas are ripe for development; however, they require the involvement of the young person's perspective in their development and evaluation (1). Furthermore, improvements in both self-management and transitional care are merely 2 parts of a wider need to improve health care for all adolescents with chronic illnesses (15). Therefore, we would propose that transitional care and self-management programs should be part of routine care for all young people with chronic health conditions. They could be envisioned as the first step in a stepped-care program (16). Viewed from this lens, the future holds great promise for adolescents with chronic illnesses to become more empowered and active participants in their medical care decisions—as long as we continue to ask the experts.
- 4Dedicated Rheumatology Expert Adolescent Multidisciplinary (DREAM) Team. 2008. URL: www.dreamteam-uk.org.
Jennifer N. Stinson RN, CPNP, PhD*, Bonnie J. Stevens RN, PhD*, Rae S. M. Yeung MD, PhD*, Patricia C. Toomey BSc, BPHE, Susan Kagan RN, CPMHN(C), EdD, Ciarén M. Duffy MB, BCh, MSc, FRCPC§, Adam Huber MD, MSc, FRCPC¶, Peter Malleson MD, FRCPC**, Patrick J. McGrath OC, PhD, FRSC, Brian M. Feldman MD, MSc, FRCPC, * University of Toronto and Hospital for Sick Children, Toronto, Ontario, Canada, Hospital for Sick Children, Toronto, Ontario, Canada, Seneca College, Toronto, Ontario, Canada, § Montreal Children's Hospital and McGill University, Montreal, Quebec, Canada, ¶ IWK Health Centre, Halifax, Nova Scotia, Canada, ** British Columbia Children's Hospital and University of British Columbia, Vancouver, British Columbia, Canada, IWK Health Centre and Dalhousie University, Halifax, Nova Scotia, Canada, University of Toronto, Hospital for Sick Children, and Bloorview Kids Rehab, Toronto, Ontario, Canada.