Article

PURPOSE: To examine subjective health-related quality of life (HRQoL) in adults
with congenital unilateral upper limb deficiency (UULD) in Norway and to explore
the associations between demographic and clinical factors and HRQoL. METHOD:
Cross-sectional study comparing HRQoL, measured by SF-36, among adults with UULD
and an age- and gender-matched control group from the Norwegian general
population (NGP). RESULTS: Seventy-seven respondents, median age 42 years (range:
20-82); 71% were women. Most had left-sided (61%), below elbow (53%), transverse
(73%) deficiency. Compared to the NGP, the UULD group reported reduced HRQoL on
all SF-36 subscales except for the role emotional (RE) scale
(p=0.321), mental
health (MH) (p=0.055) and mental component summary (MCS) (p=0.064). The greatest
difference was on the bodily pain (BP) scale (point difference of 20.0). Multiple
linear regression models showed significant association between several physical-
and mental SF-36 subscales and occupational status, occurrence of comorbidity and
chronic pain. CONCLUSIONS: Persons with UULD reported reduced HRQoL on most SF-36
subscales, mostly in the physical health domain. Employment status, occurrence of
comorbidity and chronic pain seem to have a negative impact on the HRQoL.
Measures that can reduce pain and loss of function should be given particular
attention in UULD rehabilitation. Implications for Rehabilitation Persons with
congenital unilateral upper limb deficiency (UULD) who experience pain and
discomfort should seek professional help for evaluating their everyday coping
strategies. Professionals who meet persons with UULD should examine anomalies,
comorbidity, pain and employment status before choosing advices and actions.
Individually adapted grip-improving devices, environments, physical exercise and
pain management programs should be implemented early to reduce pain, loss of
function and decreased HRQoL. A multidisciplinary approach is often necessary when counseling persons with UULD.

Langue : ANGLAIS