Article

PURPOSE: To describe an adult population with congenital limb deficiency (CLD)
recruited through the National Resource Centre for Rare Disorders (TRS) in
Norway: (1) demographic factors, (2) clinical features, (3) pain and (4) use of
health care and welfare services. METHODS: Cross-sectional study. In 2012, a
postal questionnaire was sent to 186 eligible persons with CLD, age 20 years and older. RESULTS: Ninety-seven respondents, median-age 39 years (range: 20-82); 71%
were women. The population was divided into two subgroups: (1) unilateral
upper-limb deficiency (UULD) n = 77, (2) multiple and/or lower-limb deficiency
(MLD/LLD). About 40% worked full-time, 18% received disability pensions and 64%
reported chronic pain, mostly bilateral pain. Grip-improving devices were used
more often than prostheses; 23% were previous prosthesis users. Use of health
care and welfare services are described. No significant differences were found
between the subgroups regarding pain or employment status. CONCLUSIONS: Persons
with CLD reported increased prevalence of chronic pain, mostly bilateral, and
increased prevalence of early retirement. A greater focus on the benefits of the
use of assistive devices, the consequences of overuse and vocational guidance may
moderate pain and prevent early retirement.
Further studies of more
representative samples should be conducted to confirm our findings. IMPLICATIONS
FOR REHABILITATION: Most adults with congenital limb deficiency (CLD) live
ordinary lives and experience normal life events. However, several report chronic
pain and retire before normal retirement age. In spite of free and accessible
prosthetic services, a large fraction chooses not to use prosthesis, more use
grip-improving devices for specific activities. These preferences should be
acknowledged by rehabilitation specialists. Focus on individually adapted
environments, more information about the consequences of overuse, and vocational
guidance may moderate pain and prevent early retirement.

Langue : ANGLAIS