Children with chronic disease represent a complex and underappreciated problem for their physicians, parents and the health care system generally. Because they often fail to take their medications as prescribed, """"""""cheat"""""""" on dietary restrictions, monitor their disease inadequately, and under- or over-accommodate for the impact of the disease on their usual daily activities, these children suffer potentially preventable compromises in the health-related quality of their lives. No amount of high quality technical care will lead to improved health outcomes for these children without their cooperation and follow-through. Mechanisms for forging an effective alliance between children, parents and pediatricians, in which treatment decisions are discussed, negotiated and mutually agreed upon, have to date been elusive. We propose a three-part invervention (for parents, children and physicians) to attack the problem of a dysfunctionally passive role for children and their parents in health care. Using two chronic diseases, inflammatory bowel disease and juvenile diabetes as models for the development of this program, we will develop and test the interventions designed to: increase children's effective information seeking, improve the skills they need to make their values and preferences for treatment known, improve their abilities to work with parents and physicians to tailor treatment regimens, and develop their negotiation skills. The children's experimental intervention will include an animated, computer-assisted interactive videogame deriving content from a treatment algorithm for the management of their disease. Children will also be given a board game to be played with parents, designed to enhance their negotiation and disease management skills. The parents' intervention will include the board game, plus a videotape, designed to reinforce children's negotiation skills. The physicians' intervention will include an interactive computer program, designed to improve physicians' negotiation skills with children and parents. We will compare the effects of this intervention program with a control group program for parents and children, in improving children's health status, both clinical and self-reported in randomized controlled trials. If successful, this intervention could be integrated into routine pediatric practice to enhance the effectiveness of care for children with chronic disease.
| Parsons, S K; Barlow, S E; Levy, S L et al. (1999) Health-related quality of life in pediatric bone marrow transplant survivors: according to whom? Int J Cancer Suppl 12:46-51 |
