Affiliation:
1. Department of Psychology, University of Oslo, Oslo, Norway
2. Frambu Resource Centre for Rare Disorders, Siggerud, Norway
Abstract
Abstract
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.
Funder
The National Advisory Unit for Rare Disorders
Frambu Competence Centre for Rare Disorders
Publisher
Oxford University Press (OUP)
Subject
Public Health, Environmental and Occupational Health
Cited by
6 articles.
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