Of the 625 respondents who completed the survey, 509 (81%) had their surgery within 10 years of survey completion and were included in the analysis considering the greater in focus to survivorship during the last 10 years (see Table 1).
Content and delivery format of physical rehabilitation education and treatment
The highest percentage of respondents reported receiving no physical rehabilitation education or treatment for the physical side-effects of scars, torso and breast support issues and physical discomfort disturbing sleep (Fig. 1). Where some form of physical rehabilitation was received, the most common delivery formats were verbal instructions or a pamphlet. The least common delivery format was follow-up sessions where exercises/scar massage or breast support were checked and/or progressed by a health professional (Fig. 1). For the physical side-effect lymphoedema, less than 30% of the respondents received any physical assessment and ~ 25% received either no education at all about lymphoedema or only after they had developed the condition (Fig. 1).
For the physical side-effects of breast support and bra fit issues, ~ 70% of respondents received no specific guidelines or education from a health professional (Fig.
1) and more than one in two reported that they were not able to find a comfortable, well-fitting bra following their breast cancer surgery (Fig. 2). For each physical side-effect, less than 50% of respondents were satisfied with the physical rehabilitation education or treatment they received (Fig. 3); the percentage was highest for the side-effects of lymphoedema and shoulder issues and lowest for physical discomfort disturbing sleep.
Patient Perceptions Of Physical Rehabilitation
Three major themes emerged from analysis of the qualitative data. Women perceived: (i) they were unaware of and unprepared for the physical side-effects of their surgery/treatment; (ii) information delivery was unsuitable in terms of the timing, delivery method and cognisance of patient needs; and (iii) follow-up was insufficient at critical time points of recovery (Fig. 4).
Theme 1: Unaware of and unprepared for the physical side-effects
Respondents consistently reported they were unaware of and unprepared for the physical side-effects, which made the physical side-effects more distressing and debilitating.
“My breast lymphoedema became apparent 8 months after radiation finished. It frightened the hell out of me because I thought the lumpiness was the cancer returning. Huge scare!” (P444).
“I would have liked more information about the side effects of each treatment stage, so I could have been more prepared mentally “(P554).
“Providing more information about what is likely to happen after the surgery. I think I was in shock for about 2 weeks and I didn't really take in what I was being told immediately after the surgery. I didn't even understand what I needed to know (because you don't know what you don't know)” (P622).
“..finding a bra to fit me was two years of hell” (P 282).
Theme 2: Information delivery was perceived to be unsuitable
The timing of delivery meant that the content of physical rehabilitation education and treatment resources was not commonly connected to patient needs at the various stages of recovery or when women were in a cognitive or emotional state to allow them to understand or retain information.
“I had visits post-surgery in hospital and I was very affected by pain killers. I don't remember much about their advice then” (P309).
“…follow up when relevant rather than convenient to health care.
e.g. information about bras etc doesn’t sink in while you are waiting for pathology results" (P704).
The delivery format of pamphlets or verbal instructions were perceived to be ineffective.
“I was inundated with pamphlets, most of which I did not read” (P599).
“ …make info available in different forms e.g. verbal, written pamphlet, online and video (P98).
Theme 3: Follow-up was insufficient
Respondents consistently reported the need and desire for more follow-up with health professionals to help them to manage physical side-effects associated with their surgery. Respondents lacked the knowledge to self-manage their side-effects and how to access appropriate professional help.
Respondents from rural/regional areas perceived they were particularly disadvantaged by limited local access to cancer-specific expertise and difficulty and expense of travelling to venues that offered exercise programs.
Respondents who had their surgery in private hospitals reported that breast care nurses were not necessarily employed in private hospitals, which limited any follow up.
“Often problems/questions can occur later but without good background knowledge a person isn't quite sure what is normal or not normal” (P242).
“More physio intervention whilst in hospital rather than saying; "lift your arms - oh you will be fine". Cording and truncal and lymphoedema prevention should be discussed. As should scar management and sleeping with specialist in field rather than surgeon saying: "you will need to massage the scar for the rest of your life", and surgeon dismissing pain on sleeping” (P604).
“I found the most useful help came from physiotherapists (strength/flexion and lymphoedema). I would like to see surgeons and oncologists work more closely with physios. Patients should be referred to appropriate practitioners ASAP” (P408).
“Private patient - I needed to source a lot of information myself…Developed lymphoedema - didn't have info regarding assessment prior to surgery - this should be a must” (P685).
“A rehab program is available but at a venue approx. 60 km from where I live” (P281).
“The availability of a breast care nurse in my regional area would have been a great help, plus GP's support and advice could have been better.
I sourced my own private Lymphedema specialist who I had to travel 3 hours to see” (P541).
Perceptions of physical rehabilitation after breast cancer surgery could be improved.
Physical rehabilitation was perceived to be “…disjointed, unsupportive and not patient centred (P619)”. Recommendations to improve physical rehabilitation included:
“In a perfect world there would be big speciality allied services centres near every cancer care centre that could support physical health during and after cancer treatment” (P48).
“More initial information and then actually following up on patients to see how they are coping would go a long way” (P58).