Difficulty and Importance of Valued Occupations for People With Scleroderma

SIGNIFICANCE: With disease progression, people with rheumatic diseases spend more time on disease management and self-care and less time on leisure, leading to decreased well-being. However, the relative impact of changes may depend on the importance placed on different occupations. Knowing what occupations are important and difficult for people with scleroderma may help design interventions to maintain independence and well-being.

INNOVATION: Assessments used in occupational therapy typically do not measure both importance and performance. The Valued Life Activities Scale (VLA) measures both importance and difficulty of occupations in self-care, instrumental activities of daily living (IADLs), and leisure; furthermore, it has been used to track changes in valued occupations over time in persons with different rheumatic diseases and, thus, may be useful for people with scleroderma. Our purpose was to use the VLA to identify the importance of and difficulty with valued occupations in persons with scleroderma and to examine factors related to difficulty.

RATIONALE/BACKGROUND: Scleroderma is a chronic and systemic autoimmune connective tissue disease that consists of skin thickening, vascular insufficiency, and fibrosis of the internal organs. Joint pain, finger ulcers and contractures, Raynaud’s phenomenon, and fatigue make it difficult to perform daily occupations.

METHOD: A convenience sample of 77 persons with scleroderma was recruited from the Scleroderma Foundation website and participated in the study. Inclusion criteria included a diagnosis of scleroderma and the ability to communicate in English. Our sample was predominantly female, with a mean age of 53 yr and a mean disease duration of 9 yr.

Participants completed the VLA, a questionnaire with 33 items, under three occupational domains: obligatory, committed, and discretionary. Obligatory occupations include self-care, committed occupations include IADLs, and discretionary occupations include leisure. For each item, participants rated importance on a scale ranging from 1(not important) to 3 (very important) and difficulty with performance on a scale ranging from 0 (no difficulty) to 3 (unable to do). Participants also completed a demographics questionnaire, questions regarding the presence and severity of disease symptoms, the Health Assessment Questionnaire (HAQ), and the Center for Epidemiologic Studies Depression Scale (CES–D).

Using an analysis of variance (ANOVA), we compared three domains on the VLA on importance and difficulty. We used two-sample t tests to compare scores on the VLA and VLA domains by variables that might be expected to relate to valued occupations (age, education level, fatigue, pain, ulcers, gastrointestinal involvement, and HAQ and CES–D scores).

RESULTS: Results show that obligatory occupations were significantly more important than committed and discretionary occupations (p < .001). The most important obligatory occupations were self-care and inside mobility. Committed occupations were significantly more difficult than both obligatory and discretionary occupations (p < .001). In particular, the most difficult committed occupations were heavy housework, minor repairs, and child care. Less fatigue and lower HAQ and CES–D scores resulted in less total VLA difficulty scores and domain scores.

CONCLUSION: Committed occupations were more difficult for people with scleroderma to perform; however, obligatory occupations were more important. Future research could follow people over time to identify factors that may lead to difficulty; these factors could be targets for interventions.