Importance and difficulty with valued life activities for people with systemic sclerosis

Abstract

Purpose

To identify the importance of and difficulty with valued activities in persons with systemic sclerosis (SSc) and to examine relationships between disease symptoms and difficulty with valued activities using the Valued Activities Scale (VLA). A secondary purpose was to examine the internal consistency of the Short-VLA Scale (S-VLA).

Methods

A cross-sectional convenience sample of 99 people with SSc completed questionnaires regarding demographics, symptom severity, Health Assessment Questionnaire (HAQ), Center for Epidemiologic Studies Depression Scale (CES-D), and the VLA.

Results

Obligatory activities were rated as most important; committed activities were significantly more difficult than obligatory and discretionary. Less fatigue (p < 0.01) and lower HAQ (p < 0.001) and CES-D (p < 0.01) scores were associated with higher total VLA scores. Internal consistency of the S-VLA was excellent (Cronbach’s alpha = 0.92; p < 0.0001). The correlation between the S-VLA and the VLA was excellent (r = 0.96; p < 0.001). There were moderate correlations between the S-VLA and the HAQ (r = 0.73; p < 0.0001); the correlation with the CES-D was only fair (r = 0.35; p < 0.001).

Conclusions

Committed and discretionary activities were more difficult for people with SSc to perform. Results are similar to findings with people with rheumatoid arthritis and systemic lupus erythematosus.

IMPLICATIONS FOR REHABILITATION

• Home management/caregiving (committed) and leisure and social participation (discretionary) activities are more difficult to perform by people with SSc compared to self-care (obligatory) activities.

• Our findings that difficulty scores on the VLA were associated with more fatigue and depression suggest the need for rehabilitation to reduce disability in people with SSc.

• The S-VLA may be a useful screening and monitoring tool for SSc and other chronic conditions.

Keywords:

• ADL/IADL disability
• everyday activities
• fatigue
• participation
• scleroderma
• social and leisure activities
• systemic sclerosis

Acknowledgements

The authors would like to acknowledge and thank all the participants who took part in this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).