Impact of social-functioning and sleep on quality of life in chronic inflammatory demyelinating polyneuropathy

Introduction /Aims The impact of impairment of social functioning and sleep on health-related quality of life (HR-QoL), is unknown in chronic inflammatory demyelinating polyneuropathy (CIDP). The value of the Chronic Acquired Polyneuropathy Patient-Reported Index (CAP-PRI) to identify potential social functioning and sleep issues is equally unknown. Methods We performed a cross-sectional evaluation of social functioning and sleep using the “Scales for Outcomes in Parkinson’s Disease” (SCOPA) in 40 subjects with clinically-stable CIDP through a structured questionnaire. We assessed HR-QoL through the CAP-PRI. Disability was evaluated through the Overall Neuropathy Limitation Score (ONLS). Results SCOPA social functioning scores were impaired at least “a little” per averaged item in >50% of subjects, and at least “quite a bit” per averaged item in >20%. Most affected items were (i) difficulty with work/household/other chores (ii) difficulties with hobbies/sport/leisure activities. SCOPA sleep sub-scores indicated at least “a little concern” for night-time sleep in nearly 50% of subjects. Abnormal sleep timing was rare. Associations were found between both SCOPA social-functioning and SCOPA sleep scores and the CAP-PRI. Linear regression demonstrated the SCOPA social-functioning score was independently associated with the CAP-PRI. The CAP-PRI showed high association with disability scores, good internal consistency, absence of ceiling effect, absence of significant floor-effect, and good criteria-related as well as construct-related validity. Discussion Social functioning and night-time sleep are frequently affected in CIDP and impact on HR-QoL. In contrast to traditional disability scales, the CAP-PRI additionally allows adequately capturing these impairments and may represent an adequate holistic outcome measure.