Patient experiences of muscle biopsy in idiopathic inflammatory myopathies: a cross-sectional survey

Sutu, B; Maxwell, S; Oon, S; Ross, L; Day, J

Author(s): Sutu, B; Maxwell, S; Oon, S; Ross, L; Day, J;
Details: Publication Year 2024-07-31,Volume 44,Issue #10,Page 2129-2137
Journal Title: Rheumatology International
Abstract: INTRODUCTION: Muscle biopsy plays an important role in the diagnostic evaluation of individuals with suspected idiopathic inflammatory myopathies (IIM). However, variability in biopsy practices may result in a heterogenous patient experience. The existing literature offers limited insights into the experiences and perspectives of patients undergoing muscle biopsy. METHODS: This study employed a 27-item online survey to comprehensively characterise the experience of muscle biopsy among Australian patients, including their concerns, beliefs about procedure utility, information sources, physical sensations, perceived complications and recovery. RESULTS: A total of 111 Australian individuals who reported a diagnosis of IIM completed the survey, with data collected from March to June 2023. Most participants had inclusion body myositis (76/111, 68.5%) and had undergone one biopsy procedure (87/111, 78.4%) as part of their IIM work-up. Nine of the 111 respondents did not undergo a muscle biopsy. The procedure was well-tolerated by many respondents, however, a notable number of respondents experienced post-procedural pain lasting > 72 h (27/102, 26.5%), increasing weakness post-biopsy (13.7%), numbness at the biopsy site (18/102, 17.6%) and a recovery time beyond 3 days (36/102, 35.3%). A substantial minority (30/111, 27%) felt they were inadequately informed about the risks and benefits of the procedure. CONCLUSIONS: This survey highlights that although muscle biopsy is often well-tolerated, there are considerable patient concerns that are often inadequately addressed. Our findings underscore the need for improved patient-doctor communication and support throughout the biopsy process.
Publisher: Springer
Keywords: Biopsy; Diagnosis; Myositis; Patient preference; Patient-centered care; Surveys and questionnaires
Research Division(s): Inflammation
PubMed ID: 39083047
Publisher's Version: https://doi.org/10.1007/s00296-024-05668-4
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2024-08-14 09:49:45

Last Modified: 2024-10-03 09:19:52