Methods and patients Using validated child health questionnaires (CHQ-CF87 child, CHQ-PF50 parent) we explored QoL in children with SDS aged 5–18 years (followed at SDS multidisciplinary clinic at Leeds) from their own perspective and from that of their parents. 7 children and 1parent for each child completed the self-administered questionnaires. All data was analysed and interpreted as per the scoring and interpretation manual provided with the questionnaires.

Results Quantitative data showed below or average scores in more than 50% of the group in the following health concepts -general behaviour; general health perception; parental impact-emotional and family activities. This indicated poor perception of child’s general health, parents experiencing a great deal of worry/concern as a result of child’s physical or psychosocial health and child’s health interrupted family activities or was a source of family tension. Qualitative analysis revealed that children reported good health although a minority worried about their health. They admitted to difficulty in performing activities which required energy (running etc). A minority expressed difficulties with self care. All children experienced mild pain or discomfort. Most were happy and got on with friends. Though most liked themselves but thought others felt badly about them. Most recognised their health/behaviour caused family conflict or tension. The majority admitted to arguing and not wanting to do what parents/teachers said. The majority of parents worried about their child’s health and reported behaviour causing tension or disruption of everyday family activities. Most parents expressed uncertainty about their child having a healthy life. A minority of parents (25%) reported limitation of physical activity, but 50% expressed difficulty with school work or activities with friends due to emotional/behavioural problems. Majority of parents reported their child experiencing pain/discomfort. Difficulty concentrating and paying attention was common as was being argumentative.

Our findings identify important qualitative areas of concern and highlight potential areas for providing targeted support to children with SDS and their families.