Improving education and coping of scoliosis patients undergoing surgery, and their families, using e-health

PURPOSE: Healthcare providers have limited time to spend with scoliosis patients who are considering surgery and their families. The purpose of this study was to evaluate an e-health strategy to increase knowledge and coping in patients with scoliosis who are surgical candidates and their families. METHODS: We enrolled patients with scoliosis who were candidates for surgery and their families. Patients and their families completed the scoliosis knowledge questionnaire, meaning of illness questionnaire, social support and coping questionnaires before and after access to a comprehensive evidence-based scoliosis website (http://www.aboutkidshealth.ca/scoliosis). RESULTS: Seventy-four patients and 71 parents completed the evaluation. While both patients and parents improved their knowledge of scoliosis (p = 0.001 and p = 0.003, respectively), the scores of patients were consistently lower than those of the parents both before and after website use (p = 0.0001). Only parents demonstrated a change in the meaning of illness questionnaire, with a small increase in the negative attitude towards illness and a small decrease in the positive attitude towards illness (p = 0002 and p = 0.01, respectively). Of the 12 coping methods examined on the Adolescent Coping Orientation for Problem Experiences (A-COPE) instrument, patients were slightly more likely than parents to use relaxing and solving family problems as tools to cope following website access (p = 0.02 and p = 0.09, respectively). Parents demonstrated no significant changes in the four methods of coping on the Coping Health Inventory for Parents (CHIP) after website exposure. While the majority of patients and parents reported receiving sufficient support, over half of the patients indicated a need for more support in social participation. CONCLUSION: An evidence-based website increased the knowledge of patients and parents but simply providing access to the website had minimal impact on their coping and perceptions of social support. The website, however, provides users with the opportunity to absorb vital information about scoliosis across several media.