Muscle biopsies might be important for the diagnosis and subtyping of idiopathic inflammatory myopathies but the patient experience is less than ideal, prompting a call for improved patient-doctor communication and support throughout the biopsy process.
A recent online survey of 111 Australians with a self-reported diagnosis of “myositis” found 92% underwent a muscle biopsy. Most (78.4%) had a single biopsy while 13.5% underwent two biopsies.
The most common diagnoses were inclusion body myositis (IBM, 68.5%), polymyositis (10.8%) and dermatomyositis (8.1%). Most respondents were under the care of a neurologist (76.6%) or rheumatologist (32.4%).
The study, published in Rheumatology International [link here], found the most common site for muscle biopsy was the quadriceps (85.3%) followed by the biceps/triceps (16.7%) and deltoid (4.9%).
The majority of participants reported having an open biopsy (68.6%) performed by a surgeon (73.5%) as part of an inpatient admission or as a day procedure.
“Most respondents recalled being “asleep” (80.4%) during their biopsy procedure – suggesting they were performed using anaesthesia or sedation,” the study authors said.
The study said the biopsy procedure appeared to be well tolerated by the majority of patients.
“However, a number of respondents experienced pain associated with their procedure (13.7%), post-procedural pain for >72 h (26.5%) or post-procedural pain that required analgesia (35.3%).”
Increased weakness (13.7%) and numbness at the biopsy site (17.6%) were also reported. Patients reported needing longer recovery periods than expected and were reluctant to have a repeat procedure.
More than a third (35.3%) of participants required more than three days to return to their normal level of function, and almost half (47.9%) of those in paid employment at the time of their biopsy required time off work.
“For those who required time off work, the median duration was four days (range 1-120 days, interquartile range of 2–7 days),” the study authors said.
Two-thirds (67%) of respondents reported a scar >2 cm resulting from their procedure.
The investigators, including rheumatologist Dr Jessica Day from the Royal Melbourne Hospital and the Walter and Eliza Hall Institute of Medical Research, said the majority (73%) of patients believed they were provided sufficient information before their biopsy.
However that left a significant minority of participants who felt communication was inadequate.
They reported not being provided with enough information about the process or not given sufficient opportunity to ask questions about the risks and benefits of the procedure.
Most participants sought information about muscle biopsies from the doctor responsible for diagnosing their condition (57.7%), while others asked the proceduralist (39.6%). Some patients encountered conflicting opinions from various information sources.
“Several participants also raised concerns about the lack of coordinated communication between their diagnostician and their biopsy proceduralist, which led to anxiety and distress that the wrong muscle was or would be biopsied,” they wrote.
“Inadequate communication may also explain why nearly 12% of participants were uncertain about the biopsy findings.”
The investigators said the diversity in patient experiences suggested that approaches to muscle biopsy were not standardised across Australia.
“It is noteworthy that the majority of our survey participants had IBM and yet heterogeneity of experience was still observed.
“To achieve the best possible patient care outcomes, future efforts to evaluate and compare muscle biopsy approaches should not focus solely on diagnostic efficacy but must also consider the patient perspective.”
“Improved models of care may include improved pre-procedure counselling and post-acute care planning, including proactive referrals to Allied Health to improve functional recovery post-procedure, and more comprehensive pain education and management.”