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. 2022 Nov;50(11):3000605221132463.
doi: 10.1177/03000605221132463.

Living with small fiber neuropathy: insights from qualitative focus group interviews

Aysun Damci  1   2 , Janneke G J Hoeijmakers  1   2 , Jeroen de Jong  3   4   5 , Catharina G Faber  1   2 , Maria A C de Mooij  3   4 , Jeanine A M C F Verbunt  3   4   6 , Mariëlle E J B Goossens  3
Affiliations

Living with small fiber neuropathy: insights from qualitative focus group interviews

Aysun Damci et al. J Int Med Res. 2022 Nov.

Abstract

Objective: Small fiber neuropathy (SFN) is characterized by chronic neuropathic pain and autonomic dysfunction. Currently, symptomatic pharmacological treatment is often insufficient and frequently causes side effects. SFN patients have a reduced quality of life. However, little is known regarding whether psycho-social variables influence the development and maintenance of SFN-related disability and complaints. Additional knowledge may have consequences for the treatment of SFN. For example, factors such as thinking, feeling, and behavior are known to play roles in other chronic pain conditions. The aim of this study was to obtain further in-depth information about the experience of living with SFN and related chronic pain.

Methods: Fifteen participants with idiopathic SFN participated in a prospective, semi-structured, qualitative, focus group interview study. The focus groups were audio-recorded, transcribed, and analyzed cyclically after each interview.

Results: The following main themes were identified: "pain appraisal", "coping", "social, work, and health environment", and "change in identity". Catastrophic thoughts and negative emotions were observed. Living with SFN resulted in daily limitations and reduced quality of life.

Conclusions: Given the results, it can be concluded that an optimal treatment should include biological, psychological, and social components.

Keywords: Small fiber neuropathy; biopsychosocial model; chronic pain; focus group; pain; qualitative research.

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Conflict of interest statement

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Hoeijmakers reports a grant from the Prinses Beatrix Spierfonds (W.OK17-09). This work was generated within the European Reference Network for Neuromuscular Diseases. Dr. Faber reports grants from the European Union’s Horizon 2020 research and innovation programme Marie Sklodowska-Curie grant for PAIN-Net, Molecule-to-man pain network (grant no. 721841), grants from Grifols and Lamepro for a trial on IVIg in small fiber neuropathy, grants from Prinses Beatrix Spierfonds, Steering committees/advisory board for studies in small fiber neuropathy of Biogen/Convergence, Vertex, Lilly and OliPass, outside the submitted work. Dr. Verbunt, Dr. Damci, Dr. Goossens, Mrs. De Mooij, and Dr. de Jong declare no conflicts of interest.

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