Health complaints and work experiences among adults with neurofibromatosis 1.

BACKGROUND

Neurofibromatosis type 1 (NF1) is a rare genetic disorder with usually benign nerve tumours, skin problems, pain and cardiovascular problems among common complications.

AIMS: To examine work participation and experiences in relation to health complaints among adults with NF1.

METHODS

We conducted a cross-sectional self-reported survey among 142 persons with NF1 (mean age = 50.3 years, SD = 12.0; 62% females). We measured physical and social dimensions of work experiences with eight items from the third wave of the epidemiological survey 'Nord-Trøndelag Health Study' (HUNT3). We compared NF1 data to 27 036 HUNT3 controls. We measured health complaints with the 29-item Subjective Health Complaints Inventory (SHC; subscales musculoskeletal pain, pseudoneurology and gastrointestinal problems) and compared NF1 data to norms.

RESULTS

Compared to controls, significantly more persons with NF1 reported workplace bullying (13% versus 5%) and work as physically exhausting (74% versus 44%), whereas fewer reported work autonomy (64% versus 80%). Women with NF1 reported significantly more SHC than female norms (99% versus 86%). Men with NF1 reported significantly more pseudoneurology and gastrointestinal problems compared to male norms (76% versus 58%). SHC explained 9% of the variance in physical work experiences (β = -0.47; 95% CI -0.76 to -0.19) and 8% of the variance in social work experiences (β = 0.48; 95% CI 0.18-0.78).

CONCLUSION

Persons with NF1 experience more physical and social work problems, and both work domains were related to health complaints. Individualized assessment and information to co-workers and managers may represent ways to increase work participation among persons with NF1.