Objective: To evaluate health-related quality of life (HRQoL) and its determinants in children with congenital hand differences (CHDs). Design: Survey. Setting: Outpatient clinic of a university hospital. Participants: Children (N=116; age range, 1014y) with CHDs. Interventions: Not applicable. Main Outcome Measures: HRQoL evaluated by child self-reports of the Pediatric Quality of Life Inventory and compared with reference values of healthy peers. Multivariable regression analysis was performed to investigate determinants of HRQoL. Results: All children with CHDs had scores similar to those of healthy peers, except for a lower score on social functioning in children aged 13 to 14 years. Higher ease of activity performance was related to higher HRQoL scores, and presence of comorbidity was related to lower scores on all HRQoL subdomains except for school functioning. Additionally, physical health was influenced by ethnicity, bilateral involvement, and previous surgery; emotional functioning by the number of affected digits; school functioning by age; and total HRQoL by bilateral involvement. Conclusions: Children with CHDs report similar HRQoL as healthy peers. HRQoL decreased in the presence of comorbidity but increased with higher ease of activity performance. Scores on some subdomains were improved by the number of affected digits, but were reduced by age, ethnicity, bilateral involvement, and surgery. Although HRQoL is an important health outcome, it may not be sensitive to detect changes over time or changes after treatment in children with CHDs.

Adolescent, Child, Female, Hand deformity, congenital, Male, Quality of life, Questionnaires, Rehabilitation
dx.doi.org/10.1016/j.apmr.2011.09.004, hdl.handle.net/1765/38302
Archives of Physical Medicine and Rehabilitation
Erasmus MC: University Medical Center Rotterdam

Ardon, M.S, Janssen, W.G.M, Hovius, S.E.R, Stam, H.J, & Selles, R.W. (2012). Low impact of congenital hand differences on health-related quality of life. Archives of Physical Medicine and Rehabilitation, 93(2), 351–357. doi:10.1016/j.apmr.2011.09.004