Health Related Quality of Life in Children with Osteoporosis: Utility of the DOCC scale and the PODCI
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Purpose Clinical care providers today are more aware and have a better understanding of how osteoporosis affects a child’s quality of life and their ability to function. Fractures result in pain and suffering for children with this chronic illness and there is often a further reduction in mobility, independence, hospitalization, time out of school, and considerable stress upon the family (Caulton, Ward, Alsop, Dunn, Adams, & Mughal, 2004). No published data could be found on the health related quality of life (HRQoL) for children who have been diagnosed or are receiving treatment for osteoporosis. The purpose of this study was to report on the HRQoL of children with osteoporosis using two validated questionnaires. Methods An exploratory cohort study was conducted with a small convenience sample of 31 children with secondary osteoporosis receiving medical care from the Children’s Hospital of Eastern Ontario (CHEO) participated. Data were collected using a generic questionnaire, the Dimension of Childhood Chronicity (DOCC) scale, and a disease specific questionnaire, the Pediatric Outcome Data Collection Instrument (PODCI), both of which measure HRQoL. Results The total score for the DOCC scale was a mean of 59 out of a total possible score of 92. This result was not statistically different when compared with mean of children with disabilities. On the PODCI questionnaire, participants scored the lowest, with scores less than 68, in the areas of sports and physical functioning, pain and comfort, and happiness. Their overall Global Functioning score was 75. These results were statistically significant when compared to a healthy population. Based on the HBSC study question, 70% of study participants rated their health as good or excellent. Conclusions Despite low study numbers, it is evident that their disease has a substantial effect on the day to day life. However, parents do not view their child as unhealthy as they are seeing improvements in their physical functioning and their children are happy and enjoying life.