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Table 2 Verbatim quotes and their corresponding themes

From: Treatment in the STAMPEDE era for castrate resistant prostate cancer in the UK: ongoing challenges and underappreciated clinical problems

Theme 1: The prostate cancer pathway: continuity of care

STAMPEDE and CHAARTED

“Before NHS agreed to fund it [docetaxel for men with metastatic hormone sensitive disease] in January, we were just doing it based on the American study [CHAARTED], which was the more extensive group [higher volume metastatic disease] and not do the people with minimal disease. And we’re trying to still do that, just to keep the numbers down...I’m in the process of being made to say that we’re going to have to have a waiting list for these patients.” (Medical Oncologist)

Changes to standard of care

“…That has caused a problem, at an MDT, yesterday because they referred a patient who was five months out…and then the patient got upset that they weren’t offered it [docetaxel with ADT]...But then there’s no evidence for it, beyond 90 days…surgeons would argue that if there’s no evidence you should give. Whereas oncologists argue that if there’s no evidence you shouldn’t give [docetaxel].” (Medical Oncologist)

Theme 2: Uncertainty with treatment sequencing in CRPC

Treatment sequencing

Yes, it always has changed practice. So basically all patients who are of shall I say good performance status, have limited comorbidity are now being considered for chemotherapy alongside androgen deprivation therapy for metastatic hormone sensitive disease…So a lot of it [treatment options] is individual…[future treatment] will change somewhat because the use of chemotherapy may have happened earlier on for hormone sensitive disease.” (Clinical Oncologist)

“But I think I probably would still go for, let’s see, I think if somebody’s had adjuvant chemotherapy when they relapse I would be more inclined to go to further hormone therapies first before going back to chemotherapy. Mm, I haven’t decided about that yet.” (Medical Oncologist)

Performance status, fitness for treatment and treatment decisions

“…to get enzalutamide or abiraterone [men with CRPC] have to be performance status zero or one. And they have to have, be asymptomatic or minimally symptomatic…So you can’t give it to patients who are poorly or you shouldn’t give it to patients who are poorly…Well actually the docetaxel performance status is zero to two. So if you have a poorly patient and some people will, if they have say liver mets or what have you, they’ll go straight to docetaxel…I would, if I had someone who was really fit, I would potentially give them enzalutamide or abiraterone pre-chemotherapy, if they had liver or lung involvement.” (Medical Oncologist)

“…although in young fit men that probably will influence me giving docetaxel before giving abiraterone, yes, or enzalutamide…so performance status, they’d have to be PS 0 or 1 for me to give them docetaxel generally,with good renal function, and you know, just generally a good performance status” (Clinical Oncologist)

“So you can be fairly unfit to have hormones, but for the chemotherapy we’d only offer that to people who are fit basically…at some level, able to withstand it anyway.” (Urologist)

Theme 3: Quality of Life and adverse effects

Physiological adverse-effects

“These things go off a bit of a cliff when they start the hormone therapy, so they’ve got a sense of what they’re normally like, and they very quickly get a sense that they’re different on hormones.” (GP)

“Fatigue, hot flushes, hot flushes are probably the top one, a change in mood...I often see men for urinary urgency and frequency.” (Physiotherapist)

Compromising treatment and muscle wastage

“Well, I think the benefits have to be twofold, don’t they, so there are disease specific benefits and then there’s QoL and they’re not necessarily aligned.” (Urologist)

“…really quality of life is a, it’s a huge issue and there’s no point in keeping people alive if we’re wrecking their lives.” (Clinical Oncologist)

“So I’ve seen muscle wasting that was quite significant that was stopping somebody from going out and doing their job…So, although there was data for overall survival benefit in continuing the hormones, I stopped the hormones after discussion, because I felt that we’re going to leave him housebound…” (Clinical Oncologist)

“While I don’t have any method in clinic of assessing muscle wastage and I certainly don’t have time to sit measuring their muscle bulk...I probably should weigh them more often, but it depends what I’m going to do about it, I guess.” (Clinical Oncologist)

Theme 4: Prostate cancer and exercise

NICE recommendations and purpose

“Well I was surprised to find out that NICE’s has actually made recommendations and usually when NICE makes a recommendation then it, it eventually happens because it means it’s going to be funded.” (Clinical Oncologist)

“I personally think it’s a fundamental aspect of healthcare so, you know, I think it would be hugely beneficial if we had more access to it.” (GP)

“if it was a drug, exercise would be being prescribed all the time ...” (GP)

Physiological and psychological benefits. “Well I think there’s increasing evidence that exercise decreases death rate, not just prostate cancer but cardiovascular fitness and cancer, you know there is a link…

So your chances of survival and good quality of life increase massively if you’ve got a normal body mass index and you’ve got cardiovascular fitness...” (GP)

“I think an increased feeling of well-being, an increased quality of life, reduction in cardiovascular morbidity and mortality.” (Urologist)

Management of adverse effects

“…to sort of masculate them a little bit more by sort of encouraging them with exercise...and seeing the feedback that they give at the end is great really, and it’s giving them control because, you know, it’s quite a man-thing isn’t it, sort of needing to be in control a little bit more.” (Physiotherapist)

“I think it’s beneficial for maintaining muscle strength, quality of life and exercise capacity, which I think is very important for them, and it keeps some bone strength, you know, when on their long-term hormones, the more exercise they do the more they can maintain their bone strength, which is going to be a good thing, And it’s good psychologically, you know, if they can keep going out and playing golf or doing whatever they do, then I think that’s very important for them.” (Clinical Oncologist)