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. 2024 May 9;13(10):2798.
doi: 10.3390/jcm13102798.

Chronic Pain in Patients with Spinal Muscular Atrophy in Switzerland: A Query to the Spinal Muscular Atrophy Registry

Leonie Steiner  1 , Anne Tscherter  2 , Bettina Henzi  1 , Mattia Branca  3 , Stefano Carda  4 , Cornelia Enzmann  5 , Joël Fluss  6 , David Jacquier  7 , Christoph Neuwirth  8 , Paolo Ripellino  9   10 , Olivier Scheidegger  11 , Regina Schlaeger  12 , Bettina Schreiner  13 , Georg M Stettner  14 , Andrea Klein  1 ; Swiss-Reg-NMD Group
Affiliations

Chronic Pain in Patients with Spinal Muscular Atrophy in Switzerland: A Query to the Spinal Muscular Atrophy Registry

Leonie Steiner et al. J Clin Med. .

Abstract

Background and Objectives: Chronic pain is a common symptom in various types of neuromuscular disorders. However, for patients with spinal muscular atrophy (SMA), the literature regarding chronic pain is scarce. Thus, this study assessed the prevalence of chronic pain in children, adolescents, and adults with SMA and investigated the influence of clinical characteristics on chronic pain. Materials and Methods: This study used data from 141 patients, which were collected by the Swiss Registry for Neuromuscular Disorders. Extracted data included information on pain (present yes/no, pain location, and pain medication) and clinical characteristics, such as SMA type, motor function, wheelchair use, scoliosis, and contractures. Results: The analyses revealed that the highest prevalence of chronic pain was observed in adolescents with 62%, followed by adults with 48%, children (6-12 years) with 39%, and children < 6 years with 10%. The legs, back, and hips were most frequently reported as pain locations. Sex (females), age (adolescents), and the presence of contractures and scoliosis (with surgery) were factors that were associated with chronic pain. Conclusions: These findings contribute to a better understanding of pain in SMA, shedding light on its prevalence and characteristics in different age groups, which underscores the importance of assessing and managing pain in patients with SMA.

Keywords: Swiss-Reg-NMD; chronic pain; patient-reported outcome measure; spinal muscular atrophy.

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Conflict of interest statement

The authors declare no conflicts of interest for this manuscript.

Figures

Figure 1
Figure 1
Prevalence of chronic pain overall and in four age groups. Dark blue = chronic pain reported, light blue = no pain reported. Description of reported pain counts (n) and percent (%) for (a) all patients and all follow-up visits; (b) pain group in adults; (c) pain group in adolescents; (d) pain group in children between 6 and 11 years; (e) pain group in children under 6 years. Note that individual patients can appear in more than one age group, as they were followed over time.
Figure 2
Figure 2
Different pain locations are listed for (a) 15 children under 12 years of age; (b) 11 adolescents; and (c) 29 adults. Information on pain location was extracted at the start of pain. If patients reported pain in more than one location, each location was counted separately.
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