The views and experiences of people with myeloma referred for autologous stem cell transplantation, who declined to participate in a physiotherapist-led exercise trial: a qualitative study.
Orla McCourt, Abigail Fisher, Joanne Land and 2 others
PMID 37555437WHAT IT FOUND
People with myeloma who declined a physiotherapist-led exercise trial said travel to the London centre was tiring, time-consuming and worrying.
They wanted clear activity advice, but most had not received any since diagnosis.
Key findings
01Travel to the specialist centre was the most common reason for declining the exercise trial, and participants expected each study visit to take most of a day.
02Twelve of eighteen participants could not recall receiving any physical activity advice since diagnosis, while all interviewed agreed healthcare teams should encourage physical activity.
03Some participants described vague, absent or over-cautious physical activity advice, including being told not to exercise or walk alone, and they reported lacking access to physiotherapy.
STILL TO COME
How it was doneWhat they foundWhat it means for PTs
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What it does not show
Findings come from 18 analysed interviews with people who declined one exercise trial at one specialist centre in London, so they may not represent all people with myeloma, other locations or people with different treatment pathways. The lead author was chief investigator and sole recruiter for the trial, which may have influenced responses and made feedback about the research approach more positive. Participants were eligible for autologous stem cell transplant and were described as the fittest myeloma patients at that point, so their experiences may differ from patients who are less fit or later in treatment. Of 29 people who declined the trial, 23 consented to interview, 19 took part and one interview was not recorded, so some views may be missing. The study was completed before the pandemic, so participants did not discuss virtual delivery of exercise or recruitment. Like other exercise and lifestyle research, the trial may have attracted people already interested in physical activity, which could limit what the decliners represent.
Declared interests
Dr Orla McCourt was supported by Health Education England and the National Institute for Health and Care Research for this research project. The paper states the views expressed are those of the authors and not necessarily those of NIHR, NHS or the UK Department of Health and Social Care.
The easy way to misread this
Do not conclude from this paper that the exercise intervention was ineffective or that travel alone caused decline. It reports themes from people who declined a trial, not a test of exercise effects, and travel was connected to fatigue, mobility, time burden and treatment concerns.