Eight individuals from 6 different research teams were interviewed over a two-month period in 2021. Ten initial invites were sent to recognized experts and primary authors of peer-reviewed papers in the field of prostate cancer and exercise oncology. Three individuals accepted, four individuals declined or did not respond, and three individuals suggested other members of their research team as it was felt they could offer more valuable insights into the research question. This resulted in an additional five individuals being invited, all of whom accepted. All interviewees had experience working on funded published research studies. Many had experience working on multiple trials, ranging from feasibility trials to randomised control trials. Interviewee characteristics are shown in Table 1.
The mean duration of the eight interviews was 67 min ± 15 min. None of the interviewees requested to review their respective transcripts. Four main themes and seven subthemes relating to recruitment, homebased programmes, prostate cancer-specific considerations and emotional dimensions were generated and supported by the data.
Theme one: Recruitment is a critical challenge that must be anticipated and prepared for
The significance of trial recruitment was a topic of discussion amongst all interviewees and was identified as a major challenge within the realm of exercise oncology research. Many played an active role in recruitment such as attending hospital clinics, sending out invites or being the main contact point after an oncologist deemed a patient eligible and willing to take part in a trial. Within this theme, two distinct subthemes emerged: Recruitment barriers and recruitment methods.
Interviewees identified three main reasons as to why patients declined to participate in exercise trials: lack of interest, travel burden and time commitment. Issues around time commitment were reported to be more apparent among the metastatic prostate cancer population.
“And they just think…like the disease had spread to my bones, my oncologist told me I’ve got three years to live. Well, the last thing I want to be doing is spending my time exercising even though it may help” P3.
Recruiting as the patient is beginning active treatment was also seen as more complex, and interviewees warned researchers targeting this timepoint to be prepared for additional obstacles.
“You know there are just a lot more obstacles to recruiting someone when they’re actively in treatment and not only trying to coordinate with time, their feelings and how they’re fatigued or whatever and trying to overcome that.” P6.
Clinical workload, limited appointment times and virtual consultations were also highlighted as barriers when recruiting through hospital clinics.
Three main recruitment methods were utilised among the researchers interviewed: direct recruitment from hospital clinics, open invites, and state registry invites.
All interviewees had experience recruiting directly from hospital clinics and agreed that collaboration with the clinical team was critical. It was indicated that having a referrer or healthcare personnel on the research team can be beneficial to invoke a sense of responsibility for the trial’s success within the hospital. Involving them in the developmental stages of the trial before grant application was suggested to reinforce a sense of ownership. Being a physical presence in the hospital, attending multi-disciplinary team meetings, organising weekly calls or meetings with clinical leads, and overall building a rapport with the clinical team was seen as critical by the interviewees if recruiting from a hospital clinic.
Open invites sent through cancer support organisations were also deployed by some. However, these open calls created huge burden of follow-up as pre-screening was not possible. This resulted in many patients not meeting eligibility criteria, so the approach was not carried forward to future trials.
“It creates a lot of follow up, so you’re on the phone constantly for weeks and weeks, and you end up with, I don’t know a handful (of participants)” P1.
Recruitment through the state cancer registry was considered a more viable option compared to open invites as pre-screening for specific parameters was possible. In some cases, it had become the primary method of recruitment.
“From clinic to our next strategy which I am a fan of…we are kind of lucky to have access to the state registry…its rather time-consuming but we have been more successful with that” P1.
Theme Two: There are both positives and negatives to home-based programmes
Several interviewees had experience with home-based exercise programmes, with some having to transition their supervised trials to the home setting during the Covid-19 pandemic. Home programmes were reported to tackle recruitment barriers such as travel and time commitment and were particularly popular with younger patients that may be juggling work and family commitments.
“Having the accessibility, just doing it in their home. I think it’s actually helped our recruitment.” P8.
However, in terms of overall benefit, most interviewees still reported supervised, in person, exercise classes to be superior in terms of training benefits.
“Well, I guess, with our home programme, I think some preliminary data for us seems like they’re not getting the same like training benefit that those in person are” P6.
A possible lack of personal motivation, lack of equipment, difficulty achieving adequate exercise intensity, reduced ability to coach, loss of peer and social support and a greater need to trust patients were cited as some of the disadvantages experienced with home programmes.
“In terms of it can take more motivation on the other individual’s part, to show up and be accountable to themselves…I think we find people are willing to show up when they are accountable to others and a group.” P6.
A blended approach that combines supervised and home-based programmes with the option for participants to fully transition to a home programme was suggested by some interviewees to be a feasible strategy. However, it was highlighted that accurately monitoring activity and intensity in the home environment can present challenges, particularly when adherence to a specific exercise prescription is required for research purposes.
“We have them using, you know, wearable technology, to try, so to try to verify what they’re doing. For resistance, I’ve got no way of verifying it entirely, you know, you told me you did this, I’ve got to take your word for it”. P4.
Theme Three: There are specific health characteristics, exercise prescription and outcome measure factors that must be considered when working with prostate cancer cohorts
All interviewees gave their views on designing and conducting exercise trials for this cohort of patients based on their direct experience.
Interviewees reported that prostate cancer and its treatment side effects posed challenges for patients, potentially affecting their ability or willingness to participate in exercise. The most common side effects observed in the non-metastatic prostate cancer population were incontinence and fatigue. Given the potential changes in physical and mental health among this cohort over the duration of a study, a flexible exercise programme was stated to be hugely valuable and likely necessary.
“If you have a step-by-step protocol you know, can it be varied, can you come off script a little if they are not hitting or increasing by a certain point” P5.
Interviewees with experience working with the metastatic prostate cancer population, stated that bone pain due to bony metastases and the safety issues around loading effected regions was problematic and led to restricted exercise prescriptions. Disease progression and active therapy such as chemotherapy and radiation therapy were noted as more common in this cohort of patients and must be considered. Interviewees found patients generally managed to continue with the exercise intervention with some adjustments during active treatment if they were already established on the exercise programme.
“Actually, they were still motivated to take part…chemotherapy isn’t necessarily the excluder that we thought it might be or didn’t hinder our patients, and they carried on.” P2.
One of the most common issues that caused the interviewees to alter their planned exercise prescription was not cancer related but was associated with existing comorbidities or lack of mobility.
“I mean, it really depends on what other conditions they come along with, really, is one of the biggest things you know…Things like arthritic joints or particularly painful joints and that can make it challenging.” P5.
Some interviewees found a “introductory phase” at the beginning of their study, where the main focus was on technique, body awareness, and flexibility to be beneficial.
“But we found it to be really helpful to spend that time on mobility exercises to get more range of motion through their hips and back and then just teaching them body awareness…and then they’re able to progress quicker.” P8.
Exercise prescription considerations
When asked about the exercise programme for this cohort, generally, the advice was to start and progress slowly.
“And if they haven’t ever exercised before, you don’t want to suddenly give them a huge amount of load, and they kind of can’t walk for a week because they’ve got huge amount of thigh or muscle DOMS (delayed onset muscle soreness)”P5.
Progression and programme intensity were suggested to be based on the previous session as some participants will progress slower than predicted. It was felt that prostate men have a remarkable ability to adapt to exercise and can be pushed harder than other cancer patients as they move through the programme.
“I think they have a great capacity to respond, I think they’re just older men who have really, really low testosterone as opposed to kind of low.” P4.
High intensity was suggested by some, particularly with resistance training, to aid adaptation when trying to reduce session time or volume. However, those with experience delivering a high-intensity programme, spoke of the challenges that came with higher intensities and suggested to err on the side of caution, remembering these patients may be cardiovascularly compromised.
“It required one to one supervision….it required a high degree of motivation by those men, is it possible? The answer is: it is possible. Is it practical? I don’t think so.” P4.
Interviewees expressed their views on the most appropriate fitness outcome measures for this cohort of patients in a research setting. The two main fitness elements discussed were cardiovascular fitness and strength.
Regarding cardiovascular fitness, some interviewees emphasised cardiopulmonary exercise testing (CPET) as the gold standard, suggesting limitations with field tests such as a ceiling effect. However, the majority regarded field tests to be appropriate and reduced equipment and time resources. Some interviewees argued that field tests were more accessible and could allow researchers to bring their programme out into the community and home setting.
With regards to strength tests, one-repetition maximum was deemed appropriate by all with strength test experience. Field tests such as the 30s sit to stand were used as a substitute when programmes were tested out in the community or the home setting.
Quality of Life (QOL) questionnaires were reported as one of the most tedious and irritating outcome measures for participants and researchers. Methods used to administer questionnaires varied between electronic and hardcopy, but there was general agreement among interviewees that technology was not a barrier with this cohort. Interviewees stated the completion of QOL questionnaires was high, however the more sensitive sections on sexual health were the areas most likely to be omitted. Interviewees also highlighted that psychological outcomes were as important as physiological outcomes and must be considered when evaluating the success of an exercise intervention.
“If you design an intervention and nothing changes physiologically, but they’re telling you that their quality of life or their fatigue scores are better, you know that is still a win, and maybe that’s the most important win we have because it’s their life.” P4.
Another point to note was a perceived lack of control over the standardisation of procedures when outsourcing services, such as Dual Energy X-ray Absorptiometry (DEXA).
Theme Four: There are emotional dimensions to exercise oncology trials
The emotional dimensions discussed by the interviewees applies to both researchers and the study participants themselves, leading to two distinct subthemes for each group.
The interviewees felt a sense of responsibility to do right by their trial participants. This responsibility seemed to feed into every aspect of the intervention with tremendous thought and effort going into the design, delivery and aftercare of patients, in some cases even once the trial had ended. Interviewees expressed that time commitment was not an issue if a task was deemed to help the trial’s success. Several interviewees advised that future researchers adapt when needed, be patient and prepare for “bumps in the road”. (P3)
It was implied that the emotional link and the added sense of responsibility could be difficult for novice researchers, particularly if they do not have experience working with cancer patients, have not received appropriate training or do not have a healthcare background. Debriefings were used by one research team if a researcher felt particularly overwhelmed by a conversation or situation.
“It’s tough, you know, as you build a relationship with people and they’re maybe confiding in you and issues that are important to them, so yeah, it’s not something anyone can just do….I often said to consultants, you know, there needs to be some training for people who are exposed to this, to this cohort, especially in a kind of close proximity setting that we have in the hospital or in the community…but there’s not.” P7.
All interviewees felt the social and peer support aspect of an exercise class was as important to a male cohort as to a female cohort.
“The camaraderie that happens in the class is actually, we have found that it’s almost stronger among the men than the women.” P8.
Some interviewees found the additional support offered by the research team was often the main draw to signing up rather than the exercise element itself.
“I found the patients that have said yes, are the kind of patients who do either want or perhaps need a little bit more support.” P2.
Furthermore, it has been suggested that participants in exercise trials may experience improved healthcare as an indirect benefit, because of receiving additional assessments and increased contact time with research staff. As a result of building close relationships with programme facilitators, participants often disclose personal health concerns that might have gone undetected during routine medical appointments. While interviewees did not observe a gender-based difference in the facilitator’s rapport-building capacity, they suggested that exploring this topic in future research could be intriguing.