Impact of Chronic Pain and other Health Problems on the Quality of Life in Children and Young Adults with Spina Bifida

We assessed the impact of health problems in children and young adults with spina bifida on their health-related quality of life. Design: We surveyed 124 children and young adults with spina bifida in central florida identified through multiple sources including multi-specialty clinic rosters, Title V clinic registries, and community-based spina bifida associations. The Child Health Questionnaire, CHQ) and SF-36 were used to assess health related quality of life (HRQOL). Results: the sample included 84 children age 5 to 17 years old and 40 young adults age 18 to 30 years old. In the past year, more than half (55%) had experienced a bladder infection, 40% pressure sores, 39% an allergy to latex, 385 scoliosis or kyphosis, 32% chronic pain, and 37% a weight problem. Children with chronic pain (versus those without chronic pain) reported the largest difference in HRQOL scores in both the psychosocial or physical health areas: physical HRQOL; 24.7 vs. 37.5, p < .01; psychosocial HRQOL; 48.7 vs. 41.4, p < .01. Adults with chronic pain reported significantly lower pyschosocial health scores (46.0 vs. 58.1, p < .01. Other conditions associated with significantly reduced HRQOL scores were pressure sores and bladder infections in children and latex allergy in adults. Conclusions: In both children and adults with spina bifida, chronic pain has a substantial negative impact on physical and psychosocial health-related quality of life. In order to maximize the quality of life of persons with spina bifida, increased efforts are warranted to identify and control chronic pain.