Chronic inflammatory neuropathies and their impact on activities and participation

Abstract

Background: Chronic inflammatory demyelinating polyneuropathy (CIDP) and multifocal motor neuropathy (MMN) are inflammatory neuropathies that can lead to considerable limitations in daily activities and in social participation. However, systematic evaluation of these self-reported limitations is lacking in the currently available studies. Understanding the impact of these diagnoses on patients' life is important to optimize management strategies.Aim: To systematically assess the self-reported limitations in activities and participation and determine associated factors. Methods: A survey study was conducted in 2021 in a cohort of patients with CIDP (n = 257) and MMN (n = 148) from a university hospital. The survey included the Raschbuilt Overall Disability Scale and the Utrecht Scale for Evaluation of Rehabilitation-Participation, questions addressing personal and disease-related factors and treatment.Multivariate linear regression analysis was used to determine associations with diseaserelated and personal factors.Results: A total of 147 CIDP and 103 MMN patients responded. Limitations in activities were reported by 70.7% CIDP and 52.2% MMN patients with moderate to severe limitations in 22.4% and 5.9% patients, respectively. Participation restrictions were reported by 50% of CIDP and 40% of MMN patients, nevertheless satisfaction with participation was high. Fatigue, pain and resilience were independently associated with limitations in activities and satisfaction with participation in CIDP patients.Conclusions: Activity limitations and restrictions in participation are common in CIDP patients and to a lesser extent in MMN patients. Fatigue, pain and resilience independently contributed to perceived limitations in CIDP patients. Referral to a rehabilitation physician is warranted to address these limitations appropriately.

ExoBand, A Passive Wearable Device as a Walking Aid in Neuromuscular Patients: First Quantitative Assessment

“…A study on CIDP patients confirmed substantial limitations in mobility-related activities [5]. According to the current guidelines, orthoses, physiotherapy, and occupational therapy are recommended for CIDP patients [9].…”

“…In neuromuscular disorders muscle weakness often results in gait abnormalities, leading to reduced walking distance, increased fatigue, and a high risk of falls [5,6]. This restricted mobility may also contribute to weight gain, exacerbating motor function.…”

Clinical outcome in chronic inflammatory demyelinating polyneuropathy: Facing variability

“…Moreover, the clinical scales and even patient reported outcome measures (e.g., Medical Research Council (MRC) scale, handgrip strength, and Rasch-built Overall Disability Score (RODS)) do not necessarily correspond with patients' own perspectives on experienced disease burden and impact on participation (work and social interaction). 5 In this issue of the journal, Al-Zuhairy and Jakobsen reviewed the literature on published data on outcome in CIDP. 6 The authors focused on typical CIDP and excluded variants of CIDP.…”