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.

BACKGROUND

Recruitment rates to rehabilitation trials are variable among cancer survivors, and deeper investigation into the causes for declining participation is needed. The aim of this study was to qualitatively explore the experiences of people with myeloma referred for autologous stem cell transplant who were approached to take part in a physiotherapist-led exercise trial but declined.

METHODS

Participants were asked to participate in this qualitative study after declining to participate in a trial conducted at a UK tertiary cancer center. Semi-structured interviews were conducted. Data was analyzed inductively using reflexive thematic analysis.

RESULTS

Interviews from 18 myeloma patients (56% male, mean age 62 years) were analyzed. Four themes were identified: 1) Traveling to the specialist center is challenging, not just logistically; 2) Individualized approach valued but recall of research information variable; 3) Being less active has profound impact yet ameliorative support is lacking; and 4) Common side-effects of treatment are expected and endured but personal impact underestimated and unaddressed.

CONCLUSION

A number of barriers to participation were identified. Travel, a commonly cited reason for declining research participation, is more than a logistical issue for cancer survivors experiencing side-effects and the time burden of clinical appointments. Expectation or knowledge of the typical side-effects from myeloma and its treatment may lead to under-reporting of concerns to care providers, despite their impact upon daily activities and quality of life. Approaches used for research recruitment should consider the timing and consequences of ongoing cancer treatment to reduce potential barriers to participation.