Low health-related quality of life in adult individuals with multiple limb deficiencies compared with population-based reference values.

BACKGROUND: Knowledge on health-related quality of life (HRQoL) in multiple limb deficiencies (LDs) is limited. OBJECTIVES: To investigate self-reported HRQoL in multiple LDs, assess differences between congenital LD and acquired LD and sex, and to evaluate associations between the types of LDs, demographic variables, and HRQoL. STUDY DESIGN: Cross-sectional cohort study. METHODS: A total of 106 individuals with multiple limb deficiencies treated at the EX-Center were invited by mail to fill out the Short Form-36 survey. RESULTS: Responses from 62 participants, mean age ± SD 49.5 ± 14.2, showed that 43 had congenital LD and 19 had acquired LD. Responders reported reduced HRQoL in all Short Form-36 domains except Role-Emotional, compared with reference values (P < 0.05-<0.001). Individuals with a congenital LD reported worse Bodily Pain than acquired LD (P < 0.05), and women reported lower Physical Function than men (P < 0.05). Sick leave was negatively associated with physical composite score. Living in a rural area was positively associated with Mental Health (P < 0.01), and congenital LD was negatively associated with Vitality (P < 0.05). CONCLUSIONS: Individuals with multiple LDs in Sweden have lower HRQoL compared with reference values. There are significant associations between sick leave and physical function, rural living and mental health, and the type of LD and vitality.

Health-related quality of life in Swedish children and adolescents with limb reduction deficiency.

AIM: To investigate health-related quality of life (HRQoL) in young persons with limb reduction deficiency (LRD). METHODS: One hundred and forty children with LRD aged 8-16 answered the DISABKIDS questionnaire for children with chronic health conditions. Of their parents, 137 answered a corresponding questionnaire concerning their child. RESULTS: Compared to reference data from children with other health conditions, children with LRD showed higher overall HRQoL and higher HRQoL in all subscales except social exclusion. Overall, the results were not related to gender or age, but girls with longitudinal, bilateral or lower LRD reported significantly lower HRQoL in most subscales than girls with other forms of LRD. Unexpected attention and perceived physical appearance had a significant impact on HRQoL. There was poor agreement between parent and child report of the child's HRQoL. CONCLUSION: Children and adolescents with limb reduction deficiency have a better HRQoL than children with other health conditions but there are subgroups of children who experience a significantly lower HRQoL than their peers. The difference between parent and child ratings should be considered in clinical practice.