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

• Published in: Journal of international medical research Vol. 50; no. 11; pp. 30006052211324 - 3000605221132463
• Main Authors: Damci, Aysun, Hoeijmakers, Janneke G.J., de Jong, Jeroen, Faber, Catharina G., de Mooij, Maria A.C., Verbunt, Jeanine A.M.C.F., Goossens, Mariëlle E.J.B.
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.11.2022; Sage Publications Ltd; SAGE Publishing
• Subjects: Chronic pain; Focus groups; Prospective Clinical Research Report; Quality of life; Small fiber neuropathy; pain; chronic pain; qualitative research; biopsychosocial model; focus group
• ISSN: 0300-0605; 1473-2300
• DOI: 10.1177/03000605221132463

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.