Section 5 Treatment and health service provision

Transcription

1 Treatment and health service provision

2 : Experience of treatment Treatments experienced The most common treatments were surgery (n=94, 94.00%) and Radiation therapy (n=79, 79.00%). This was followed by Tamoxifen (n=43, 43.00%), Cyclophosphamide (Endoxan) (n=39, 39.00%), Paclitaxel (n=34, 34.00%), Docetaxel (Taxotere) (n=33, 33.00%) and Letrozole (Femara) (n=33, 33.00%). Participants were asked to rate their quality of life on a scale of 1 to 7, while using each specific treatment (with 1 being Life was very distressing and 7 being Life was great ). Mean quality of life scores ranges from 1.70 to 4.13, that is, all quality of life scores were with the life was very distressing to Life was average range. The treatment that scored the least impact on quality of life was Exemestane (Aromasin) (mean score 4.13). Herceptin (mean score 3.60), Tamoxifen (mean score 3.51), Anastrozole (Arimidex) (mean score 3.47) and Letrozole (Femara) (mean score 3.24) all had a mean score of at least 3, that is in the Life was a little distressing range. The remaining treatments had a mean quality of life score of 2.13 to 2.94, that is in the Life was distressing range. There was one treatment scoring less than 2 (Docetaxel/Taxotere, with a mean score of 1.70). The treatments that had a mean effectiveness score of at least 4 (Effective) were Exemestane (Aromasin) (average score 4.00), Doxorubicin (Adriamycin) (average score 4.04), Radiotherapy (average score 4.04), Paclitaxel (average score 4.21), Herceptin (average score 4.33) and Anastrozole (Arimidex) (average score 4.36). The remaining treatments scored had a mean effectiveness score of at least 3, that is in the moderately effective range. The most common theme was that participants felt as though they could cope with all side effects (n=21, 21.00%), however it was also often noted that this was because they had to (that, is they had no choice but to cope). There were also 16 participants (16.00%) that noted no side effects that they could cope with, rather they only noted that there were difficult side effects. In relation to specific side effects that participants felt they could cope with, the main themes were fatigue (n=10, 10.00%), nausea and vomiting (n=10, 10.00%). hair loss (n=9, 9.00%), radiation burns/blisters (n=9, 9.00%) and cramps (n=9, 9.00%). The most common side effect that participants felt they could not cope with was pain (n=20, 20.00%). Within this theme, there were 10 participants (that specifically spoke about bone pain, while the remaining 10 participants spoke about other pain. The next most difficult side effect was fatigue and lethargy (n=18, 18.00%). The remaining themes that were each noted by 9 participants (9.00%) included the psychological impact, restriction in mobility and change in physical appearance. Nausea and symptoms on menopause were noted as difficult side effects by 8 participants (8.00%). Adherence to medication The most common theme in this section was that participants would stick with a therapy for as long as prescribed (n=36, 36.00%). This was followed by participants describing that they would not give up on any medication (n=16, 16.00%). There were 14 participants (14.00%) that spoke about sticking to a treatment for a month or more, and 10 participants (10.00%) that described sticking to a treatment for 2 to 3 months. There were two sub-group variations where participants with stage 0-I breast cancer described not giving up on a treatment less frequently than the general cohort (5.00% compared to 16.00% in the general cohort). This sub-group also described sticking with something for about a month or more less frequently than the general cohort (5.00% compared to 14.00% in the general cohort). Participants were asked what needed to change for them to feel like a treatment is working. The two most common themes were that participants needed to see test results or have some clinical indication that the treatment is working, and needing to feel better or do everyday tasks. These themes were both noted by 21 participants (21.00%). The next most common theme noted by 13 participants was that they were unable to describe the change needed to feel as though a treatment was working. Having no disease progression or no recurrence, needing to directly fix the symptoms that it is intended to fix, and needing pain to dissipate were each noted by 11 participants (11.00%).

3 Treatment at home or hospital Participants were asked, if there was an option to have treatment in a pill form at home or chemotherapy in hospital, which they would prefer. The majority of participants spoke about a preference for taking medication at home (n=71, 71.00%). Of the remaining participants, 26 (26.00%) described a preference for hospital and two (2.00%) were uncertain. The rationale for their choice was also analysed. The most common theme was that participants preferred having medication at home because it is more convenient and comfortable (n=36, 36.00%). The next most common theme was that the participant preferred treatment at hospital in case something went wrong, however it was also noted that this would depend on the type of treatment offered (n=10, 10.00%). As a follow-up question, participants were asked what support they would need to feel comfortable having treatment at home. The majority of participants (n=59, 59.00%) spoke about needing to have someone to call if they have a question or issue, especially out or hours. The next most frequent theme was the need to be checked regularly by a general practitioner or nurse at home (n=21, 21.00%) while an additional eight participants (8.00%) described needing check-ups but not necessarily at home. Complementary therapies There were 38 participants (38.00%) that described not using any complementary therapies and this was the most common theme. Massage was the most common complementary therapy, used by 22 participants (22.00%). In a consolidated theme, there were various complementary therapies that participants spoke about including acupuncture, reiki and reflexology (n=18, 18.00%). Taking vitamins and minerals (n=14, 14.00%), healthy diets (n-12, 12.00%), mindfulness (n=10, 10.00%) and yoga or light exercise (n=7, 7.00%) were also described as complementary therapies. Service provision and affordability The vast majority of participants had access to a general practitioner (n=97, 97.00%), medical oncologist (m=96, 96.00%), surgeon (n=92.00%) and radiation oncologist (n=83, 83.00%) for the treatment of their breast cancer. The majority of patients had private healthcare insurance (n=82, 82.00%), 44 participants were treated as private patients, 27 (27.00%) as public patients and 28 (28.00%) as equally public and private patients. The majority of participants were treated in the private hospital system (n=56, 56.00%). The majority of participants have never missed medical appointments due to cost (n=76, 76.00%), and have never been unable to afford prescription medications (n=83, 83.00%). Half of participants have never had trouble paying for basic needs due to their diagnosis with breast cancer (n=50, 50.00%). Changes to work status The work status for a number of participants changed due to their diagnosis with breast cancer with about a quarter of participants reducing the number of hours worked (n=26, 26,00%), and 21 (21.00%) quitting their jobs. Very few carers had to quit their job (n=3, 3.00%) or reduce the number of hours worked (n=5, 5.00%), however, carers have had to take leave either with pay (n=34, 34.00%), or without pay (n=10, 10.00%).

4 Treatments experienced Participants were asked in the questionnaire to identify the treatments that they had experienced. most common treatments were surgery (n=94, 94.00%) and Radiation therapy (n=79, 79.00%). This was followed by Tamoxifen (n=43, 43.00%), Cyclophosphamide (Endoxan) (n=39, 39.00%), Paclitaxel (n=34, 34.00%), Docetaxel (Taxotere) (n=33, 33.00%) and Letrozole (Femara) (n=33, 33.00%). Treatments that were used and reported by less than 10 participants were not included in the tables and calculations. These included Carboplatin, Everolimus (Afinitor), Goserelin (Zoladex), Pertuzumab (Perjeta), Vinorelibine (Navelbine), Methotrexate (Ledertrexate, Methoblastin), Ribociclib, Mitomycin, Gemcitabine (Gemzar), Palbociclib (Ibrance), and Capecitabine (Xeloda). Table 5.1: Treatments experienced Treatment n= % Mean QoL score Range Mean effectiveness score Low = 1, High = Low = 1, High = 5 Surgery Radiotherapy Low = 1, High = Low = 1, High = 5 Tamoxifen Low = 1, High = Low = 1, High = 5 Cyclophosphamide (Endoxan) Low = 1, High = Low = 1, High = 7 Paclitaxel Low = 1, High = Low = 2, High = 5 Docetaxel (Taxotere) Low = 1, High = Low = 1, High = 5 Letrozole (Femara) Low = 1, High = Low = 1, High = 4 Doxorubicin (Adriamycin) Low = 1, High = Low = 1, High = 5 Exemestane (Aromasin) Low = 1, High = Low = 1, High = 5 Flurouracil (5FU) Low = 1, High = Low = 3, High = 4 Anastrozole (Arimidex) Low = 1, High = Low = 4, High = 5 Epirubicin (Ellence) Low = 1, High = Low = 2, High = 5 Herceptin Low = 2, High = Low = 1, High = 5 Range Surgery Radiotherapy Tamoxifen Cyclophosphamide (Endoxan) Paclitaxel Docetaxel (Taxotere) Letrozole (Femara) Figure 5.1: Treatments experienced (% of all participants) Doxorubicin (Adriamycin) Exemestane (Aromasin) Flurouracil (5FU) Anastrozole (Arimidex) Epirubicin (Ellence) Herceptin

5 As a follow-up question (within the questionnaire), participants were asked to rate their quality of life on a scale of 1 to 7, while using each specific treatment (with 1 being Life was very distressing and 7 being Life was great ). Mean quality of life scores ranges from 1.70 to 4.13, that is, all quality of life scores were with the life was very distressing to Life was average range. The treatment that scored the least impact on quality of life was Exemestane (Aromasin) (mean score 4.13). Herceptin (mean score 3.60), Tamoxifen (mean score 3.51), Anastrozole (Arimidex) (mean score 3.47) and Letrozole (Femara) (mean score 3.24) all had a mean score of at least 3, that is in the Life was a little distressing range. The remaining treatments had a mean quality of life score of 2.13 to 2.94, that is in the Life was distressing range. There was one treatment scoring less than 2 (Docetaxel/Taxotere, with a mean score of 1.70) Exemestane (Aromasin) Herceptin Tamoxifen Anastrozole (Arimidex) Letrozole (Femara) Radiotherapy Surgery Paclitaxel Doxorubicin (Adriamycin) Flurouracil (5FU) Cyclophosphamide (Endoxan) Epirubicin (Ellence) Docetaxel (Taxotere) Life was very distressing (Score = 1) Life was distressing (Score = 2) Life was a little distressing (Score = 3) Life was average (Score = 4) Life was good (Score = 5) Life was very good Life was great (Score = 6) (Score = 7) Figure 5.2: Treatments experienced and mean quality of life A second follow-up question was asked in relation to how effective the participant felt the treatment was on a scale of 1 to 5 (with 1 being ineffective and 5 being very effective). The treatments that had a mean effectiveness score of at least 4 (Effective) were Exemestane (Aromasin) (average score 4.00), Doxorubicin (Adriamycin) (average score 4.04), Radiotherapy (average score 4.04), Paclitaxel (average score 4.21), Herceptin (average score 4.33) and Anastrozole (Arimidex) (average score 4.36). The remaining treatments scored had a mean effectiveness score of at least 3, that is in the moderately effective range.

6 Letrozole (Femara) Tamoxifen Cyclophosphamide (Endoxan) Epirubicin (Ellence) Flurouracil (5FU) Surgery Docetaxel (Taxotere) Exemestane (Aromasin) Doxorubicin (Adriamycin) Radiotherapy Paclitaxel Herceptin Anastrozole (Arimidex) Ineffective (Score = 1) Somewhat effective (Score = 2) Moderately effective (Score = 3) Effective (Score = 4) Very effective (Score = 5) Figure 5.3: Treatments experienced and effectiveness Side effects of treatment Participants were guided to reflect on the side effects that they had experienced from their various treatments. They were then asked two, separate questions in relation to the side effects that they felt they could cope with, and the side effects that were very difficult to cope with. The most common theme was that participants felt as though they could cope with all side effects (n=21, 21.00%), however it was also often noted that this was because they had to (that, is they had no choice but to cope). There were also 16 participants (16.00%) that noted no side effects that they could cope with, rather they only noted that there were difficult side effects. In relation to specific side effects that participants felt they could cope with, the main themes were fatigue (n=10, 10.00%), nausea and vomiting (n=10, 10.00%). hair loss (n=9, 9.00%), radiation burns/blisters (n=9, 9.00%) and cramps (n=9, 9.00%). (26.00% compared to 16.00% in the general cohort). Participants with stage 0-I breast cancer reported being able to cope with fatigue more frequently than the general cohort (20.00% compared to 10.00%). Participants from rural areas reported being able to cope with all side effects more frequently than the general cohort (31.82% compared to 21.00% in the general cohort) Participant No side effects describes coping that were easy with all side to cope with. effects (because Only difficult you have to). side effects. Fatigue (tiredness) Nausea and vomiting Hair loss Radiation Cramps and therapy burns or associated pain blisters Figure 5.4: Side effects that participants could cope with (% of all participants) There were a number of sub-group variations. Participants with stage IV disease reported having no side effects that they could cope with, only difficult side effects more frequently than the general cohort

7 Figure 5.5: Side effects that participants could cope with (Word cloud) Table 5.2: Side effects that participants could cope with Side effects that patients can cope with All participants Stage O-I Stage II-III Stage 0-III Stage IV n=100 % n=20 % n= % n=50 % n=50 % Participant describes coping with all side effects (because you have to). No side effects that were easy to cope with Only difficult side effects. Fatigue (tiredness) Nausea and vomiting Hair loss Radiation therapy burns or blisters Cramps and associated pain Side effects that patients can cope with Metropolitan Rural University High School n= 56 % n= 44 % n=54 % n= 46 % Participant describes coping with all side effects (because you have to). No side effects that were easy to cope with. Only difficult side effects. Fatigue (tiredness) Nausea and vomiting Hair loss Radiation therapy burns or blisters Cramps and associated pain

8 Could cope with all side effects Well, you cope with all of them, because you don't have a choice. I get up in the morning and it takes a minute or two to get my body organized to be able to walk, because my feet are sore, my hands are sore. but you cope with it because you just got to. You don't have a choice. Participant 5 Yes. Broadly speaking I've coped pretty well with all of them. I've got two kids... That's one thing that makes you just get on with it and cope with it because they need too as well. That's one aspect of it. The surgery was just really rest and time. The radiotherapy, I was uncomfortable and the logistics of getting there and all that were a pain. I was very very glad when it was over, that whole process. But really from when I finished, it's still a bit of fatigue and stuff now but the recovery of my skin was quite quick. It's amazing how the skin regenerates itself and some of the skin's been good. The tamoxifen, that's a bit challenging given the longevity of taking that drug and mentally that's challenging because you know what it means so you know that its with you for the long term. It's finding ways to deal with the side effects in a positive way which is what I'm exploring at the moment. Participant 31 I've had to cope with all of them but that doesn't mean I enjoyed coping with it because you just got to get on and live. Participant 50 Fatigue (could cope with) Nausea and vomiting (could cope with) My nausea and vomiting et cetera were really wellmanaged, and I had tethering dose of steroids. I had lots of antiemetic, so that part wasn't a big problem. Participant 34 Yes. Well, I'm still now. I still have constant nausea and headaches, and I can cope with that. Yes, all the doctors are good with the nausea tablets and things like that. Still, having to take medication to deal with it. There's nothing else unless you try other things. Participant 51 I think the nausea probably, I meant it wasn't pleasant, but you get through that, I guess because you expect to have you know to anticipate it and are ready for it. Participant 87 The most common side effect that participants felt they could not cope with was pain (n=20, 20.00%). Within this theme, there were 10 participants (that specifically spoke about bone pain, while the remaining 10 participants spoke about other pain. The next most difficult side effect was fatigue and lethargy (n=18, 18.00%). The remaining themes that were each noted by 9 participants (9.00%) included the psychological impact, restriction in mobility and change in physical appearance. Nausea and symptoms on menopause were noted as difficult side effects by 8 participants (8.00%). 25 Probably the tiredness and feeling a bit unwell was probably the easiest to cope with. Participant Which of the side effects I'm best able to cope with? I guess the feeling of exhaustion. That was fair to be able to deal with. I guess, it's the only one I could deal with. Participant I think most of the side-effects you can get something to help with. Like tiredness, you can't you just got to rest. Participant Pain Bone pain Other pain (not bone pain) Fatigue and lethargy (tiredness) P Figure 5.6: Side effects that participants found difficult to cope with (% of all participants)

9 Figure 5.7: Side effects that participants found difficult to cope with (Word cloud) Table 5.3: Side effects that participants found difficult to cope with Side effects that are difficult to cope with All participants Stage O-I Stage II-III Stage 0-III Stage IV n=100 % n=20 % n= % n=50 % n=50 % Pain Bone pain Other pain (not bone pain) Fatigue and lethargy (tiredness) Psychological-impact (depression, stress) Restriction in physical mobility Change in physical appearance (including hair loss and eyebrow loss) Other side effects that participants couldn't cope with Nausea Symptoms of menopause

10 Side effects that are difficult to cope with Metropolitan Rural University High School n= 56 % n= 44 % n=54 % n= 46 % Pain Bone pain Other pain (not bone pain) Fatigue and lethargy (tiredness) Psychological-impact (depression, stress) Restriction in physical mobility Change in physical appearance (including hair loss and eyebrow loss) Other side effects that participants couldn't cope with Nausea Symptoms of menopause Pain (could not cope with) The pain of infections, that was hard. Pain does your head in after a while. Participant 9 Yes. Nerve pain. No, no. Nothing compared to that. Participant 10 I've had pain in my shoulder, pain in my arm, and to be told I didn't have any lymphoedema. I went to a lymphoedema conference, hopped on a plane and have everyone say, "Oh my gosh you've got lymphoedema why don't you get it treated?", that was hard to deal with but again you can ask and ask and ask and no one seems to do anything. Participant 50 Bone pain (could not cope with) The bone pain because there were just days I couldn't control it. Participant 39 Chemo I think is the worst. Yes, just everything. Then having to give yourself the steroid injection a few days later, and then being awake night after night. Then I had sleeping tablets, so I could get some sleep and the bone pain. It was just all awful. Participant 65 Bone pain, I forgot to mention that too, deep, deep bone pain that nothing touches. There is no way, I stood in showers, I did everything I could think of. Participant 78 Fatigue and lethargy (could not cope with) At times, I guess the tiredness at times. The frustration because you can't get on and do stuff you want to get on and do. Having said that, I kept very active all through my whole treatment even with radiation. The Tamoxifen definitely knocks you around a bit more in terms of how you're feeling? Participant 12 I found the fatigue and the bone pain, really difficult. I knew I should have been exercising, but I just found that by the time the third chemo came around, I just felt completely incapable of doing that, but I was still working and I continued to work throughout. That probably used up a fair amount of energy, and I do think I would have benefited from doing more exercise, or even doing something like yoga at that time. (continued after last question answered - all part of one response) I found writing very difficult, I found trying to sustain concentration for any period of time was really difficult. Participant 34 I think the fatigue that came from it is really hard because you really just you want to do things but you just can't. Your body doesn't respond the same way. Yes and the fatigue stays forever. It doesn't just stop when treatment stops. Participant 53 Adherence to medications Participants were asked how long they stick with a therapy before they think it might not be working or give up on it. The most common theme in this section was that participants would stick with a therapy for as long as prescribed (n=36, 36.00%). Participants primarily spoke about adhering to treatment in consultation with their treating clinician: I always go by the doctor's advice and If I think it's not working I ask if I should give it up. I don't make my own decisions on that. Participant 3

11 I haven't given up on any treatment. I suppose that decision would be made in consultation with my doctors. I haven't given up on any treatment because you assume they are working and you can't see that it's working, although with the chemotherapy with me because I had chemotherapy before surgery, we could see on the scans that my tumour was shrinking and certainly that made us to continuing with that. I haven't given up on any treatments. Participant 23 I usually do it whole. I usually just see the whole course out. If it's medication and they're giving you a month or two months to do it, I would usually give it the whole time. You don't know. Sometimes medication would take up to a month to just start kicking in and then it works from there on. You've got to be open-minded and positive about everything. Participant 78 This was followed by participants describing that they would not give up on any medication (n=16, 16.00%): I pretty much haven t given up on anything that had been suggested to me, to be honest. I'm facing back supplements now because that's what I was advised to do. In terms of everything that I was advised to do and take, I did. The only thing I did negotiate with my oncologist towards the end of the chemo, was a reduced thyroid dose because it was making me a bit crazy. In fact, I would say, taking the steroids was probably the worst bit about chemo. Notwithstanding the fact that are not probably managed a bunch of side effects. It made me quite wired and made it very difficult for me to sleep. Participant 22 I had been diagnosed with so many things since then that I have stuck to all my medications I've been given. If I give up -- A lot of people give up on Tamoxifen. I've had enough of that. but I've heard the longer you're on that, the more your body copes with it. The symptoms become less. You have to give your body time to adjust to them too. You can't just say, "Oh well this isn't working." Like I said, I still had no cancer. To me, that drug was working. You know what I mean? Participant 24 No. It never been a factor. I've always given myself 100%. I made the decision at the beginning to do what they told me to do. I'd always kick myself if I did stop and I'd never know if I didn't keep going. Does that make sense what I'm trying to say? Participant 62 There were 14 participants (14.00%) that spoke about sticking to a treatment for a month or more, and 10 participants (10.00%) that described sticking to a treatment for 2 to 3 months. There were two sub-group variations where participants with stage 0-I breast cancer described not giving up on a treatment less frequently than the general cohort (5.00% compared to 16.00% in the general cohort). This sub-group also described sticking with something for about a month or more less frequently than the general cohort (5.00% compared to 14.00% in the general cohort) Participant describes sticking with something for as long as prescribed (adherence depends on advice of doctor) Participant describes not giving up Participant describes sticking with something for about a month or more Participant describes sticking with something for about 2 to 3 months Figure 5.8: How long patients stick to a therapy (% of all participants) a

12 Table 5.4: How long patients stick to a therapy Adherence to treatment All participants Stage O-I Stage II-III Stage 0-III Stage IV Participant describes sticking with something for as long as prescribed (adherence depends on advice of doctor) n=100 % n=20 % n= % n=50 % n=50 % Participant describes not giving up Participant describes sticking with something for about a month or more Participant describes sticking with something for about 2 to 3 months Participant describes adherence depending on side effects Participant describes sticking with something for as long as it is working Participant describes sticking with something for about a week or two Adherence to treatment Metropolitan Rural University High School Participant describes sticking with something for as long as prescribed (adherence depends on advice of doctor) n= 56 % n= 44 % n=54 % n= 46 % Participant describes not giving up Participant describes sticking with something for about a month or more Participant describes sticking with something for about 2 to 3 months Participant describes adherence depending on side effects Participant describes sticking with something for as long as it is working Participant describes sticking with something for about a week or two Impact of treatment Participants were asked what needed to change for them to feel as though a treatment was working. The two most common themes were that participants needed to see test results or have some clinical indication that the treatment is working and needing to feel better and more energised. These themes were both noted by 21 participants (21.00%). The next most common theme noted by 13 participants was that they were unable to describe the change needed to feel as though a treatment was working. Having no disease progression or no recurrence, needing to directly fix the symptoms that it is intended to fix, and needing pain to dissipate were each noted by 11 participants (11.00%) Participant describes needing to see test results or have some clinical indication that the treatment is working Participant describes needing to feel better/more enegised Participant is unable to describe what needs to change for them to feel like treatment is working Participant describes having no progression of disease or maintaining stable disease (no recurrence) Participant describes Participant describes needing treatment needing to directly pain to dissipate fix the symptoms that it is intended to fix. e.g if it is to stop neuropathy, it should stop neuropathy Figure 5.9: What needs to change to know a treatment has worked

13 Table 5.5: What needs to change to know a treatment has worked What needs to change for patients to feel like treatment has worked Participant describes needing to see test results or have some clinical indication that the treatment is working Participant describes needing to feel better/energised Participant is unable to describe what needs to change for them to feel like treatment is working Participant describes having no progression of disease or maintaining stable disease (no recurrence) Participant describes treatment needing to directly fix the symptoms that it is intended to fix. e.g if it is to stop neuropathy, it should stop neuropathy Participant describes needing pain to dissipate All participants Stage O-I Stage II-III Stage 0-III Stage IV n=100 % n=20 % n= % n=50 % n=50 % What needs to change for patients to feel like treatment has worked Participant describes needing to see test results or have some clinical indication that the treatment is working Participant describes needing to feel better/energised Participant is unable to describe what needs to change for them to feel like treatment is working Participant describes having no progression of disease or maintaining stable disease (no recurrence) Participant describes treatment needing to directly fix the symptoms that it is intended to fix. e.g if it is to stop neuropathy, it should stop neuropathy Metropolitan Rural University High School n= 56 % n= 44 % n=54 % n= 46 % Participant describes needing pain to dissipate Needing to see test results or have some clinical indication that the treatment is working There's no warranty or anything on it but I'd love to know if you could have a blood test to see what your hormones are like. Do you really need to be on it? Or is it over-precautionary, or whatever. You think the choice is to take the tablet or die. And that's' not always on the back of my mind. It pops into my head every now and then and I think, "Well, what can I do about it?" There's no complete treatment and answer. They can't say you're going to never get it back. Participant 36 I think just my cancer markers and my scan. The main reason you use your treatment is to reduce the cancer. If that's not happening then there's no point in taking it. Participant 61 The main thing is the clinical markers, but that is obviously balanced with how I am feeling and whether the side effects are tolerable. I do need to see that it is not making me feel worse I guess is the short answer. Participant 70 Needing to feel better and energised This is a hard one because I truly felt that most of my treatment has worked. I don't know how to answer that question because I hadn't given up on the treatment. You need treatment is going to give you energy, makes you feel good, that makes you feel like you really need to feel you're well enough to go and do things. You want something that's going to energise you. To tell you, it's a great part of those things. Participant 24 Yes, that's right. Probably a general feeling of wellbeing, definitely. If I'm feeling more energized and not so because that's one of the other things is that I'm still suffering quite a bit with fatigue. So if I felt that something was supposed to be helping me from a fatigue perspective and it wasn't getting any better, then I wouldn't continue it. Participant 56

14 I just want to feel like I can do the things that I want to do and not have the cancer dictate what I can do. I just want to get back to as much normalcy as possible, that's all. Participant 81 Having no disease progression or no recurrence Yeah. Well for me it's very specific. It is for me to know that it's working is that I know that I'm continuing to have my tumours shrinking and not progressing. Yep, that's the only, I guess that's it. If you're talking about in terms of what's making it work. Participant 52 I think the main thing would be to keep it stable, you know not make it worse. That would be the main thing. It's probably the thing I worry about the most is not so much whether it will fix me but whether it will aggravate it and make it worse. Participant 74 I don't know how to answer that. I guess the only way of knowing it's worth is if your cancer doesn't come back. I guess you'll know everything has worked if there's no spread, no recurrence of the cancer. Participant 80 Needing to directly fix the symptoms that it is intended to fix Anything? I've got to feel the difference. obviously, the aspirin, I just take that because I know I've got prevent this clotting, so I'll just take that. The Lyrica they put me on, I've started on it. There's definitely a difference with my feet, so I stay on it. The fish oil when I went off it, literary I was struggling to walk so definitely back on it. I was on Rosehip, and I went off it, and I noticed absolutely no difference. Participant 39 That all depends on what you're taking the treatment for, isn't it? You couldn't apply that to all the treatments that you take because it all depends on what outcome that you're looking for really. That's not a straight forward question to ask. Yes, if I was looking for something to help with my mouth ulcers then I'd be looking for relief immediately of course and something like that. With chemotherapy, I'm looking for something to help kill cancer cells and try to do live a lifestyle to help just promote that chemotherapy to work. I don't drink alcohol or anything like that that's going to combat my body. I give it the best opportunity to work. I might look for immediate responses unless it's like a treatment that's successful, like mouth ulcers and stuff like that. Yes, it's all dependent on what it is that I'm doing and what outcome I'm looking for from it. Whether I persevere with it. Participant 43 I suppose I need to- If it s an antibiotic I would want to know that the infection that it s treating is clearing up. As if like those vitamins I just mentioned, I supposed I d like to see that the experience the benefits of the product that they are advertising-- to know that it s worth keeping continuingly. Participant 68 Needing pain to dissipate Pain needs to be less. Some clear outcome. I got quite depressed and anxious at one point and took medication for that. obviously, you know whether you feel better or not on that, and that took a bit of mucking around to get the right one. Participant 9 Well. I'm hoping that the chemo I'm about to start will get rid of the symptoms that I'm sure are caused by the cancer, like pains at the top of my tummy and the pain in my shoulders and the pain in my lower back. I think what needs to improve is my quality of life or the symptoms. Participant 60 Just my temperature going down and just the pain level going down. The comfort. Yes. Participant 89 Treatment at home or hospital Participants were asked, if there was an option to have treatment in a pill form at home or chemotherapy in hospital, which they would prefer. The majority of participants spoke about a preference for taking medication at home (n=71, 71.00%). Of the remaining participants, 26 (26.00%) described a preference for hospital and two (2.00%) were uncertain. The rationale for their choice was also analysed. The most common theme was that participants preferred having medication at home because it is more convenient and comfortable (n=36, 36.00%): At home in tablet form, you're just more comfortable in your own home and you don't need to leave, put that energy that you put into walking out the front door, making sure you look presentable, for example, into the actual place. If it was safe to do at home without any medical professionals around you then you could just a tablet, that would be great; rather than having to go out and expend energy, especially if you're unwell. Participant 3 At home in a tablet form. That's purely about being in your own space and being around my family, being with my kids. Participant 31 The tablet. because it s more convenient, easier to administer and would require no time, unless it had significant side effects. No time off work or away from family. Participant 68

15 The next most common theme was that the participant preferred treatment at hospital in case something went wrong, however it was also noted that this would depend on the type of treatment offered (n=10, 10.00%): It depends on the type of treatment. With my chemo, I definitely would not have that at home I'd be in the hospital. If something were to go wrong I've got the necessary people there. With my other breast cancer treatment I do have that in a tablet form at home, just depends on the treatment. Participant 5 I'd still want to go to hospital to have it done only for the fact that if something goes wrong when you're doing it, they're there. I had a couple of reactions. Just the itching and that stuff. They knew what to do right away. If that happened at home, I think I would have panicked. I didn't mind going and getting it done because I knew they were looking after me. I knew they wouldn't let me home unless I was okay. Participant 62 In hospital I think because I have access to something may go wrong with the treatment, they have access to things you don't have at home. Plus, I don't want family watching me going through this stuff at home and have the memory of all that. I have to say to have it done in hospital if I could. Participant 82 There was one sub-group variation with participant with stage 0-I breast cancer describing having medication at home because it is more convenient and comfortable more frequently than the general cohort (50.00% compared to 36.00% in the general cohort). Table 5.6: Preference for treatment at home or hospital Preference for treatment at home or hospital All participants Stage O-I Stage II-III Stage 0-III Stage IV n=100 % n=20 % n= % n=50 % n=50 % Home Hospital Unsure Preference for treatment at home or hospital Metropolitan Rural University High School n= 56 % n= 44 % n=54 % n= 46 % Home Hospital Unsure

16 Table 5.7: Preference for treatment at home or in hospital (rationale) Preference for treatment at home or hospital All participants Stage O-I Stage II-III Stage 0-III Stage IV Participant describes a preference for medication at home because it is more convenient/ comfortable Participant describes a preference for hospital in case something goes wrong Participant describes a preference depending on effectiveness of treatment Participant describes a preference for hospital because they will be monitored more closely Participant describes a preference for medication at home because it will give them more control Participant describes a preference for medication at home because it is better for their family life/situation Participant describes a preference for hospital because they don't want to feel isolated Participant describes a preference for medication at home (no other explanation) Participant describes a preference for medication at home because they are afraid of needles or have bad veins Participant describes a preference for medication at home because they don't like hospitals Participant describes a preference depending on duration and frequency of treatment Participant describes a preference for medication at home but indicates concerns about needing someone to call if there is an issue n=100 % n=20 % n= % n=50 % n=50 % Preference for treatment at home or hospital Metropolitan Rural University High School Participant describes a preference for medication at home because it is more convenient/ comfortable Participant describes a preference for hospital in case something goes wrong Participant describes a preference depending on effectiveness of treatment Participant describes a preference for hospital because they will be monitored more closely Participant describes a preference for medication at home because it will give them more control Participant describes a preference for medication at home because it is better for their family life/situation Participant describes a preference for hospital because they don't want to feel isolated Participant describes a preference for medication at home (no other explanation) Participant describes a preference for medication at home because they are afraid of needles or have bad veins Participant describes a preference for medication at home because they don't like hospitals Participant describes a preference depending on duration and frequency of treatment Participant describes a preference for medication at home but indicates concerns about needing someone to call if there is an issue n= 56 % n= 44 % n=54 % n= 46 %

17 Participant describes a preference for medication at home because it is more convenient/ comfortable Participant describes a preference for hospital in case something goes wrong Participant describes a preference depending on effectiveness of treatment Figure 5.10: Preference for treatment at home or in hospital (rationale) Support needed to be treated at home As a follow-up question, participants were asked what support they would need to feel comfortable having treatment at home. The majority of participants (n=59, 59.00%) spoke about needing to have someone to call if they have a question or issue, especially out or hours. The next most frequent theme was the need to be checked regularly by a general practitioner or nurse at home (n=21, 21.00%) while an additional eight participants (8.00%) described needing check-ups but not necessarily at home. There was one sub-group variation. Participants with stage II-III breast cancer described needing to have someone to call if they have a question or issue, especially out or hours more frequently than the general cohort (73.33% compared to 59.00% in the general cohort) Participant describes that they would need to have someone to call if they have a question or issue (out of hours, 24/7 support) Participant describes need to be checked regularly by GP/ Nurse Participant describes that they would need to have regular check-ups (not at home but at the clinic/hospital) Participant describes that they would need to have support for their family/friends Figure 5.11: Support needed to be treated at home

18 Needing to have someone to call if they have a question or issue, especially out or hours. A doctor that I could access 24/7, if I needed to get any relief of sickness, vomiting or sickness resulting from taking medication. Just reassurance and someone that you could ring, 24 hour helpline, maybe, "I'm feeling this and this, is it normal? How long do I have to wait before this'll subside? Do I need to go into hospital to get relief?" Just make sure you had 24 hour back-up. You aren't left at home alone by yourself to deal with this, with the unknown. Participant 20 I suppose a phone number to someone that you could ring that would be there to talk to you. Since I was having chemo in the day I was able to phone the chemo ward, but in the evening, you were able to phone another ward and they would put you through to someone who could talk to you. I only did it once, but it was nice to know that that number was there if you needed it. And not necessarily being visited by anybody, but someone to just text you to check up on you. Participant 35 Probably someone that you could contact if you have any issues and that would have to be out of hours as well. Because that's another thing, to not have anyone to ask a question out of normal 8 to 4 hours and having to present at the emergency department along with heaps of other people for when you're dealing with something. Participant 72 Needing to be checked regularly by a general practitioner or nurse at home The regular checking from the my breast cancer nurse, or mammography nurse, or a regular checking with the so a regular check it with one of those ladies. Participant 5 I think if you're going to be doing at home from that point of view then you'd probably do need someone who's visiting regularly to ensure that you're actually taking the medication and to keep an eye on things in terms of side effects as well because you still need that support at home in your own environment. Participant 40. Probably regular visits from a nurse, breast care nurse or the cancer care nurse, to make sure that was going okay and maybe more regular visits with the oncologist as well if I wasn't seeing a practitioner every time maybe more regularly with the oncologist. Participant 79

19 Use of complementary therapies Participants were asked whether they had used any complementary therapies. There were 38 participants (38.00%) that described not using any complementary therapies and this was the most common theme: No, lots of people had lots of suggestions about different things that I could try but I felt so shitty and horrible I just didn t have the headspace to really explore them. Participant 27 I personally am not one for complementary therapies, but nobody suggested I go out and get massages or anything like that. I never really do. I don't do alternative stuff either. I've never been one for taking St. John's Wort or Valerian or anything like that. Participant 44 No. They told me not to. They said straight out, "Do not try anything." Not with the drugs. They said, "If we could do this an easier way, we would, but we can't. So don't try anything." Participant 62 Massage was the most common complementary therapy, used by 22 participants (22.00%). In a consolidated theme, there were various complementary therapies that participants spoke about including acupuncture, reiki and reflexology (n=18, 18.00%). Taking vitamins and minerals (n=14, 14.00%), healthy diets (n-12, 12.00%), mindfulness (n=10, 10.00%) and yoga or light exercise (n=7, 7.00%) were also described as complementary therapies Participant describes not using any complementary therapies Participant describes massage and/or physiotherapy as a complementary therapy Other including acupuncture, i and reflexology Figure 5.12: Use of complementary therapies (% of all participants) Participant describes taking P vitamins or mineral supplements as a complementary therapy Table 5.8: Use of complementary therapies Use of complementary therapy All participants Stage O-I Stage II-III Stage 0-III Stage IV Participant describes not using any complementary therapies Participant describes massage and/or physiotherapy as a complementary therapy Other including acupuncture, reiki and reflexology Participant describes taking vitamins or mineral supplements as a complementary therapy Participant describes diet as a complementary therapy Participant describes mindfulness as a complementary therapy (meditation) Participant describes taking walks or jogging or doing yoga as complementary therapy n=100 % n=20 % n= % n=50 % n=50 % Use of complementary therapy Metropolitan Rural University High School n= 56 % n= 44 % n=54 % n= 46 % Participant describes not using any complementary therapies Participant describes massage and/or physiotherapy as a complementary therapy Other including acupuncture, reiki and reflexology Participant describes taking vitamins or mineral supplements as a complementary therapy Participant describes diet as a complementary therapy Participant describes mindfulness as a complementary therapy (meditation) Participant describes taking walks or jogging or doing yoga as complementary therapy