1. Introduction

The increased number of women living with breast cancer has enabled greater emphasis to be directed towards physical recovery from breast cancer surgery/treatment to maximise long-term health and quality of life [1–8]. Physical recovery is required for the adverse physical effects of breast cancer surgery and treatment related to shoulder [3, 9–20] and torso issues [3], scars [3, 11, 14, 15, 17, 19, 21, 22], bra discomfort [3, 21, 23], physical discomfort disturbing sleep [3], donor site issues [3, 9], and lymphedema [3, 9, 11, 13, 14, 17, 19, 20, 24–27]. A high percentage of women perceive these adverse physical effects to be frequent and severe [3], and to last for years [5, 16, 17, 19, 28]. Moreover, poor physical recovery limits women from being physically active, resuming sport, paid work, and daily tasks [14, 16, 19, 20, 27–33], and so has health, economic, and quality of life consequences.

Many of these adverse physical effects, however, are responsive to physical rehabilitation [7, 11, 14, 24–26, 28, 34–43]; early intervention and treatment can minimise their duration, progression, and impact [3, 8, 11, 14, 24,26, 28, 38, 40, 42, 44–47]. Prehabilitation, prospective surveillance, and multidisciplinary models of care promote early detection and intervention [11, 14, 25, 26, 38,40, 42, 45, 48–52]. Within these models, assessment of physical function begins at diagnosis with education, which continues through and beyond treatment, and instigates comprehensive rehabilitation involving a multidisciplinary team [32]. In research studies, prehabilitation, prospective surveillance, and coordinated multidisciplinary rehabilitation have effectively prevented the onset, complexity, or progression of arm and torso morbidity and lymphedema [8, 51, 53, 54]. The essential components of survivorship care include prevention surveillance, intervention, and coordination of care [53], which together optimize the functional status of women living with breast cancer to enable them to resume sport, work, and life roles and maximise their quality of life and long-term health [20, 28, 32, 40, 42, 45, 48]. They are also cost-effective because they limit progression and sequelae, which are more complex and costly to manage.

Despite these benefits, translating prospective surveillance and comprehensive cancer rehabilitation services into clinical practice has many barriers and is consequently limited [11, 14, 32, 34, 39, 40, 42, 45, 55–58]. More commonly, a traditional, reactive, impairment-based rehabilitation model is used that relies on the oncologist or surgeon identifying physical impairments or swelling (i.e., with lymphedema) and then referring on a case-by-case basis for treatment by a physical therapist, occupational therapist, or exercise physiologist. Physical therapy is not a standard component of cancer care in many healthcare systems [40, 42, 45, 49]. In addition, because the referral process lacks standardized criteria and inconsistent communication, the referral is commonly delayed until the physical impairment or lymphedema is more advanced [42, 45, 46, 59].

Patient perceptions of their physical rehabilitation after breast cancer surgery, investigated in focus groups and semistructured interviews, show women are ill-informed of possible adverse physical effects, have limited access to coordinated comprehensive care, and receive inadequate attention from healthcare providers [32, 34–36, 53, 59, 60]. Physical therapists involved in cancer care also perceive that patient needs are not met by the physical rehabilitation provided in clinical practice [34, 35, 47, 56]. Most research on prospective surveillance has been in Canada, America, and Europe [48, 61]. Further research on the physical rehabilitation women receive in Australia could provide insight into the translation of prospective surveillance within Australia and facilitate the development of strategies to improve physical rehabilitation [32, 34–36, 61, 62].

The study aimed to investigate patient perceptions of physical rehabilitation received for various adverse physical effects following breast cancer surgery and the content and delivery methods of the physical rehabilitation they received. We hypothesized that respondents would perceive the physical rehabilitation they received did not meet their needs, that a low percentage of women would be satisfied with their physical rehabilitation, and that data on the content and delivery of physical rehabilitation education and treatment received would support these perceptions.

2. Participants and Methods

3. Results

3.1. Participants

Six hundred and twenty-five respondents fully completed the survey, which equates to approximately 1% of the 79,720 people living with breast cancer in Australia (diagnosed from 2013 to 2017) [64]. Respondents who completed the survey within ten years of their surgery (mean 4.5 years, SD 2.9 years) were included in the quantitative analysis (n = 509; 81% of respondents). Fifty-five percent (n = 281) of respondents completed the open responses of the survey for the qualitative analysis. The flow of participants and participant characteristics are displayed in Figure 1 and Table 1. The mean age of respondents was 59.5 years (SD 9.3 years, with range 29–85 years). Of the 509 respondents, n = 178 (35%) had Breast Conserving Surgery (BCS), n = 168 (33%) had a Mastectomy (MAST), and n = 163 (32%) had Breast Reconstruction Surgery (BRS), of which 99 (51%) had implant-based reconstructions and 97 (49%) had autologous reconstructions.

Table 1. Participant characteristics (n = 509).

Characteristics	N (%)
Type of surgery
Breast conserving surgery (BCS)	178 (35)
Mastectomy (MAST)	168 (33)
#Breast reconstruction surgery (BRS)	163 (32)
Age
Breast conserving surgery (yrs: mean (SD))	60.8 (8.2)
Mastectomy (yrs: mean (SD))	60.2 (9.5)
#Breast reconstruction surgery (yrs: mean (SD))	54.4 (8.9)
Postcode
Regional	158 (31)
Metropolitan	346 (69)
Missing data	5
Health system type
Public	132 (26)
Private	372 (74)
Missing data	5
Laterality of surgery
Unilateral	379 (74)
Bilateral	130 (26)
Lymph nodes removed
Yes	395 (78)
No	114 (22)
Radiation treatment
Yes	337 (67)
No	170 (33)
Missing data	2
Preexisting musculoskeletal issue ∗
Yes	62 (12)
No	447 (88)
Postoperative complication†
Yes	261 (51)
No	339 (49)
Missing data	1

•  ^∗Preexisting shoulder or torso injury reported. ^†Includes infections, seromas, necrosis, and other identified complications. ^#n = 76 (47%) (autologous breast reconstruction); n = 87 (53%) (implant-based).

3.2. Delivery Method and Content of Physical Rehabilitation

Pamphlets and verbal instruction were the most common delivery methods; the least common were sessions where exercises, scar massage, breast support, and lymphedema were physically assessed and checked or progressed by a health professional (Figure 2). The proportion that received each delivery method varied for each adverse physical effect. For example, less than half of the respondents reported receiving any information about scars, torso, and donor site issues or physical discomfort disturbing sleep, whereas most respondents reported to have received information about lymphedema and shoulder issues (89% and 76%, respectively; Figure 2).

3.3. Level of Satisfaction

Variation was found in the satisfaction levels for each adverse physical effect (Figure 3); however, they were all less than 50%. The percentage satisfied was highest for lymphedema and shoulder issues (49% and 44%, respectively) and lowest for physical discomfort disturbing sleep (17%). Fifty percent of respondents were not happy with the fit and support of their bras, with 16% reporting they could not wear a bra (Figure 4).

4. Discussion

Consistent with our hypothesis and previous research [28, 32–37, 53, 54, 56, 61, 62], the needs of respondents were not perceived to be met by their physical rehabilitation, and only a low percentage were satisfied. The major perceptions of respondents were that they were unprepared for the adverse physical effects they experienced, the delivery method and timing of physical rehabilitation were unsuitable, and follow-up with health professionals was insufficient. These perceptions were supported and justified by quantitative data where a large percentage of the women received no information about their scars, torso, donor site issues, or how to manage physical discomfort disturbing sleep, and only a minority received a progressive rehabilitation program across the range of adverse physical effects experiences (Figure 2). Our discussion will propose causes why these perceptions occurred and expand on respondent recommendations of potential strategies for how physical rehabilitation could be improved within similar healthcare systems as Australia.

The perceptions of the lack of awareness, insufficient follow-up, and the small percentage of women who received any continuity of care with health professionals provide evidence that a coordinated multidisciplinary approach, where a team evaluates the sum of problems that a survivor faces (e.g., physical function) and plans a treatment program, was not the standard model of care delivered to these women over this 10-year period [11, 33, 40, 42, 45–48, 52, 59, 60, 65]. Therefore, prospective surveillance, survivorship care plans, and coordinated comprehensive rehabilitation had not been translated into many hospital systems across Australia, consistent with previous research [32, 33, 61, 62]. Consequently, breast cancer treatment-related physical conditions and preexisting physical morbidities, such as frozen shoulder or rotator cuff tears (common in the age group of the highest proportion of patients diagnosed with breast cancer [53, 66, 67]), were not assessed preoperatively or in follow-up appointments by surgeons or oncologists. This explains the limited awareness of respondents and referral to physical rehabilitation, and, in turn, the self-directed physical rehabilitation sought by respondents [32, 33, 62]. Miscommunication between doctors and patients is another barrier to access identified in the qualitative data [32]; respondents stated they did not commonly discuss their adverse physical effects with their surgeons or oncologists because the doctors had not asked about their physical function and identified the need for rehabilitation referral [32]. The focus of follow-ups with oncologists was cancer progression, and with surgeons’ wound healing and aesthetics, neither doctor focused on physical function.

Previous research has also found many doctors unaware of the adverse physical effects experienced [32, 33, 45], their common risk factors (e.g., axillary lymph node dissection, radiation, postoperative infection or seroma, cording, and preexisting musculoskeletal issues) [3, 6, 24, 26, 53, 68–71], or their effect on the ability to exercise and resume sport, work, and daily tasks [32, 45]. Other barriers to access to physical rehabilitation include lack of knowledge of established criteria to assess physical function and limited physical therapy resources with breast cancer-specific expertise to lead programs or be referred to [32, 40, 42, 45]. Indeed, respondents reported that physical therapy resources within the public system focused on treating lymphedema or were limited to a single postoperative in-patient visit following mastectomy surgery only. This would explain why scar, torso, donor site, bra, or sleep discomfort were the worst gaps in care. Lymphedema and shoulder issues were still a gap for a quarter of respondents, and limited and inconsistent surveillance was provided across Australia [32, 48].

A PROM, such as the Quick Dash [72], takes as little as 5 minutes to complete and provides a quantitative framework to enable patients and doctors to monitor physical recovery and progress. It also enables patients to identify whether professional intervention is needed and provides data for clinicians and patients to determine realistic time frames for physical recovery. Indeed, in the qualitative data, respondents reported being given unrealistic time frames for physical recovery. If a consistent PROM format was utilized, the occurrence and progression of adverse physical effects and efficacy of physical rehabilitation programs could be evaluated and compared amongst different health districts.

The qualitative data found poor perceptions of the timing and method of delivery because patients were inundated with pamphlets or verbal instructions immediately postsurgery when respondents were not emotionally or cognitively capable of absorbing information and asking questions. Consequently, many respondents lacked the knowledge to self-manage their adverse physical effects and identify if they needed professional assistance. The insufficient knowledge about the disease and planned treatment leading to dissatisfaction, lack of control, and poor quality of life was consistent with previous research [32, 53, 62, 65].

Respondents recommended a staged approach to improve the timing of physical rehabilitation delivery, beginning pretreatment with greater diversity in its delivery methods (i.e., videos, podcasts, and telehealth) [20, 50, 52–54]. Although there is a plethora of information available on the Internet on breast cancer recovery, respondents desired [62] up-to-date sources of information that directed them to a structured and progressive program to self-manage their physical recovery throughout their cancer trajectory [8, 20, 62, 65, 73]. That included expected and realistic milestones and alerts to enable them to determine when and where to seek professional assistance [62, 73]. Equipping women with the knowledge to effectively self-manage would promote proactive behaviours to manage adverse physical effects, enhance well-bearing and resilience, and limit wasted time and money spent self-managing without direction [8, 25, 32, 35, 36, 65].

Expanding from respondent recommendations, the authors propose a strategy to maximise access to physical rehabilitation with limited resources by delivering different levels of care depending on the patient’s needs, recommended in previous research [40]. The lowest level of care is a freely accessible, evidence-based, online education resource that provides consistent education to empower women to self-manage a range of common adverse physical effects, monitor their progress through milestones, and alert them when and where to seek professional intervention [32, 62]. Following respondent recommendations, the format would be multimodal (i.e., videos, podcasts, and written information). The online format would allow patient access at a time relevant to their needs at different stages of recovery, cognitive capacity, and geographical location [51, 52]. The second level would involve group sessions of physical rehabilitation delivered in-person or via telehealth for women who needed more assistance and motivation with their physical recovery [8]. The delivery method for the highest level of care would be one-on-one sessions with a physical therapist, reserved for women who had more severe and complex adverse physical effects, such as lymphedema [3, 50–52, 65]. However, such a model of care would require an RCT to confirm its efficacy and cost efficiency.

Improvements in physical rehabilitation are a worthwhile investment because of the health, quality of life, and financial costs of this gap in care [42, 45]. The PROM surveillance and three-level care model’s proposed intervention strategies provide a framework for a modest health system investment that has considerable potential benefits for patients, the health system, and the economy. Early intervention can prevent lymphedema and minimise its morbidity and cost [11, 37, 61]. Maximising sleep by addressing physical discomfort, particularly in the postoperative period, promotes physical and mental recovery [3, 20, 53, 65]. Addressing issues with breasts [32] enables women to be physically active and resume sport. Early intervention prevents adverse physical effects related to scars, shoulder, and torso issues from progressing into secondary issues from misuse or disuse, which are debilitating and costly to manage [14, 41, 47, 42, 45]. Relieving these issues [32] enables women to achieve the level of physical activity required to maximise health, limit breast cancer reoccurrence, and resume work, sport, and daily activities [4, 32], ultimately maximising the quality of life of patients living with breast cancer and benefiting the health system and the economy.

5. Conclusion

Women perceived that their physical rehabilitation did not prepare them for the adverse physical effects they experienced. The method and timing of delivery did not meet their needs at various stages of recovery, and the follow-up with health professionals was insufficient. Quantitative data on the content and delivery method supported these perceptions. Causal factors for the perceptions were examined, and recommendations were made to improve physical rehabilitation by using PROMs and a three-level model of care to spread the limited physical rehabilitation resources for maximal effect efficiently. Although many women recover from breast cancer, improved physical rehabilitation could enable women to manage the immediate or long-term side effects of breast cancer surgery and treatment [1, 72].

Additional Points

Key Points. (i) A high percentage of women are dissatisfied with their physical rehabilitation following breast cancer surgery and treatment. (ii) Women perceive they are not aware or prepared for the adverse physical effects they experience, the method and timing of delivery of physical rehabilitation does not meet their needs at various stages of recovery, and the follow-up with health professional is insufficient. (iii) Quantitative data on the content and delivery methods of physical rehabilitation support these perceptions. (iv) Strategies to enhance women’s experience and physical recovery are recommended.

Ethical Approval

The University of Wollongong Human Research Ethics Committee approved all data collection procedures (HE15/453).

Consent

Tacit consent was obtained from all individual participants included in the study.

Disclosure

The authors are responsible for correctness of the statements provided in the manuscript. This manuscript was submitted as a preprint in the link https://www.researchsquare.com/article/rs-265448/v1.

Conflicts of Interest

The authors declare that they have no conflicts of interest.

Authors’ Contributions

Deirdre McGhee and Julie Steele contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Deirdre McGhee. Anne McMahon and Deirdre McGhee analyzed the qualitative data. The first draft of the manuscript was written by Deirdre McGhee and all authors commented on previous versions of the manuscript. All authors have read and approved the final manuscript.