doi: 10.1111/hex.12277
A qualitative study of rural women’s views for the treatment of early breast cancer Eli Ristevski PhD BHlthSci (Hons),* Melanie Regan RN MNur Grad Dip Cancer Care BHlthSci (Nursing),* David Birks FRACS MHlthProfEdu,† Nicole Steers RN, Grad Cert Cancer Nursing, Oncology & Cancer Biology, Grad Cert Management, Business Administration & Management General‡ and Anny Byrne RN, MClinical Nursing (Oncology (Grad Cert Cancer Care BAppSci (Nursing)))§ *Monash University, School of Rural Health - Monash University Department of Rural and Indigenous Health, Moe, Victoria, Australia, †Monash University, School of Rural Health - Churchill, Churchill, Victoria, Australia, ‡Latrobe Community Health Service, Morwell, Victoria, Australia and §West Gippsland HealthCare Group, Warragul, Victoria, Australia
Abstract Correspondence Eli Ristevski PhD BHlthSci (Hons) Department of Rural and Indigenous Health Monash University School of Rural Health PO Box 973 Moe 3825 Vic. Australia E-mail: [email protected] Accepted for publication 5 September 2014 Keywords: breast cancer, patient, psychosocial, rural, surgeon, treatment
Aim Identify what factors rural women perceived to influence their surgical choice for EBC. Background Higher rates of mastectomy still remain for women with early breast cancer (EBC) in rural areas. While access to radiotherapy is a commonly identified barrier, there is growing debate around other factors which are also important influences on surgical choice. Methods Qualitative study with 70 interviews with women diagnosed with EBC in rural Gippsland, Australia. Twenty-nine women had a mastectomy and 41 had breast conserving surgery (BCS). Results Patient led psychosocial and surgeon led factors influenced surgical choice. Psychosocial factors were a greater influence for the mastectomy group. These included a high fear of cancer recurrence and radiotherapy, negative views of the body and breast, a family history of cancer, wanting to avoid the negative treatment experiences they had seen significant others go through, and not wanting to travel for treatment. Surgeon led factors were a greater influence for the BCS group, in particular, the direct recommendation made by the surgeon for BCS. For both groups, urgency to act was a shared psychosocial factor. Trust and confidence in the expertise and reputation of the surgeon and their consultation style were surgeon led factors shared by the groups. Conclusions To ensure women achieve the best treatment outcome, patients and clinicians need to work together to identify how important and influential the various factors are for the women and, if necessary, to seek support to ensure informed decisions are made.
ª 2014 John Wiley & Sons Ltd Health Expectations
1
2
Rural women’s views of breast cancer treatment, E Ristevski et al.
Introduction It has been long established that early breast cancer (EBC) can be treated in many instances with breast conserving surgery (BCS) followed by radiotherapy or mastectomy. Both treatments yield similar survival outcomes.1–3 Numerous clinical practice guidelines (CPG) recommend women be involved in the treatment decision-making process, and where appropriate, health professionals discuss both surgical options with women; offering a choice between the two approaches.4–6 Health professionals should also inform women that body image is better preserved with BCS.4 While the rate of BCS has significantly increased across the world,7 a number of studies have found patient involvement in the decision-making does not always lead to greater choice for BCS.8–11 When women use a more active decision-making style, and when surgeons involve women in the decisionmaking process, this has been associated with greater use of mastectomy.8,9,12 Furthermore, surgeon recommendation has also been found to be an important influence on surgical choice.12–15 For women in rural areas, where mastectomy rates still remain higher than metropolitan areas,7,16–18 the relationship and communication with the surgeon is an integral part of the decision-making process, particularly as there are limited service options. While surgeon caseload and specialization have been attributed to higher rates of mastectomy in rural areas,19,20 this data does not always account for patient preferences. Roder et al.21 found surgeons with low caseloads and their patients have differing attitudes to surgical options, and access to radiotherapy services is a possible explanation for higher rates. While White et al.22 found patients’ concern about cancer recurrence and large tumour size were factors surgeons gave for continued mastectomies, factors such as wanting to return home sooner, avoiding possible further surgery, possibility of a complete cure, peace of mind, fear of recurrence, body image and fear of radio-
therapy treatment and its side-effects have also been shown to be important factors in women’s choice for mastectomy.10,14,23–25 Some studies attribute distance and travel to radiotherapy to higher rates of mastectomy, but other researchers have found this is not always the case.26–32 This raises the question, what factors are important to rural women in choosing a surgical option and how influential is the surgeon compared to other factors? Large scale studies of breast cancer treatment in rural areas have used cancer registry or hospital databases to identify factors for choice of breast cancer treatment,28,29,32–34 but fail to account for the patient voice in this process. Given the limited research of the experiences of rural women in the clinical encounter when making a surgical choice, the aim of our study was to identify what factors rural women perceived to influence their surgical choice for EBC. The study was conducted in the Gippsland region, Victoria, Australia. Cancer is the leading cause of death in Gippsland. The average number of people newly diagnosed with cancer between 2005 and 2011 was 1585, of which 12% were breast cancer cases.35 Travel to the nearest radiotherapy centre ranged between 97–518 kilometers. Breast surgery in the region was performed in five health services by five general surgeons and one visiting specialist breast surgeon. The visiting surgeon was the only female surgeon to provide breast surgery in the region. While Australia is a world leader in cancer control and has one of the best cancer survival rates in the world,36 the disparity in survival outcomes and management of cancer for people in rural areas still remains.37 Understanding why mastectomy rates still remain high in rural areas, particularly in a country with a universal health-care system (delivered under Medicare) and CPG for the management of EBC that have been in place since 2001,4 may help to better inform our understanding of the influence of patient, clinician or health system factors in treatment choices for people in rural areas.
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al.
Methods Participants Stratified purposive sampling was used to recruit participants from the six geographic regions in the Gippsland area. Eligibility included: 1. a confirmed diagnosis of EBC as defined by the CPG4; 2. eligible for both surgical options, mastectomy and BCS, 3. no previous diagnosis of breast cancer, 4. consulted a surgeon in the region for diagnosis and/or treatment, 5. lived in the Gippsland region at the time of treatment and 6. able to give informed consent. Gippsland Surgeons (n = 6), Breast Care Nurses (n = 5) and Nurse Counsellors from Gippsland BreastScreen (n = 2) identified women who met the study criteria and contacted them by telephone to explain the study aims and what was involved. Those women who were interested were sent an information and consent form. Procedure Ethical approval was obtained from four hospital, one mammography screening service and one university ethics committees. Semi-structured interviews were conducted. Interviews were between 30 and 90 minutes, recorded and transcribed verbatim. As the interviews were conducted by multiple interviewers, the research team met as a group prior to any data collection to discuss the wording, meaning and interpretation of the research questions. This ensured consistency in the questions being asked and following up on incomplete answers. Interviewers were not involved in the care of any of the participants in the study. Interviews began with an introductory question about diagnosis followed by the main research question; ‘What things helped you decide what type of operation/treatment to have?’ This open-ended question let the woman explore influences
ª 2014 John Wiley & Sons Ltd Health Expectations
without any prompting. Probing questions followed which explored factors identified in the literature and discussions the researchers had with clinical experts. Near the end of the interview, the researcher asked the participant to prioritize the factors. This was important to distinguish if the prompt questions had influenced the response. As part of the member checking process, the researcher then summarized the participant’s responses and asked if they had been accurately understood by the researcher (Table 1). Participants also completed a socio-demographic questionnaire. Data analysis Taylor and Bogdan’s38 three-phased approach to thematic analysis was used to analyse the interviews. To assist in sorting and managing the data in each phase of the analysis, the transcribed interviews and demographic details were entered into an Access database. Data analysis was triangulated among the five chief investigators and a research assistant (RJ). In phase one (discovery), ER and RJ read the transcripts for individual words and phrases and grouped these into preliminary concepts. Similarities and differences, and emerging patterns in the concepts, were identified and formed preliminary themes. In phase two (coding), ER, RJ and MR further refined the themes by examining relationships, making comparisons and noting negative cases between the themes. During this process, themes were collapsed, expanded or new ones created. These data were scrutinized until no new themes or ‘negative’ cases emerged (saturation). In the final phase (discounting), ER, MR, DB, NS and AB looked for variation and anomalies in the data. As data collection and analysis was triangulated, this stage of the analysis involved reviewing each researcher’s personal perspective (reflexivity). This process ensured the themes were comprehensive and the quotations were not skewed. Preliminary results were presented at a University colloquium and at a national cancer symposium.39 The process aided in reviewing the rigour of the data collection, analysis and interpretation. Peer critique
3
4 Rural women’s views of breast cancer treatment, E Ristevski et al. Table 1 Interview schedule Interview structure
Example questions
Introductory questions
Qu: How did you first discover you had breast cancer? Who confirmed your diagnosis? What were your thoughts and feelings at the time? Ice breaker questions. Qu: What things helped you decide what type of operation/treatment to have? This open-ended question let the woman explore influences without any probing questions. Qu: Were any of the following a factor in your decision to have mastectomy/Breast Conservation Surgery? Health professionals Clinical features of cancer and cancer treatment Family, Friends and social group Work, career Financial constraints Rural location – travel, distance, not specialist services, axillary financial costs of travel Carer responsibilities Body image Media Ethnicity, social and cultural expectations Knowledge of breast cancer and its treatment Factors identified in the literature and from discussions with clinical experts. Qu: Can you prioritize; were any of these factors more important than others? This question was important to identify if the probing questions had any influence on the participant’s response. Qu: Let me summarize what seems to be the key influences for you, let me know if this is a correct interpretation As part of the member checking process, the researcher then summarized the participant’s responses and asked if they were accurately understood by the researcher.
Main research question Probing questions
• • • • • • • • • • •
Prioritizing factors
Summary of factors
assisted in refining the themes generated in phase three, ensuring the interpretation and the conclusions made in the study were plausible, supported by evidence in the literature and relevant to clinical practice.
Results Seventy women consented to participate in the study. Twenty-nine women had a mastectomy, and 41 had BCS. There were no significant differences in clinical or socio-demographic characteristics between the mastectomy and BCS groups (Table 2). On average, participants were aged in their early sixties, were in a relationship, had completed up to middle secondary school and were not in paid work. Of those in paid work, the majority were in nonprofessional occupations (Table 2). Eight factors emerged as key influences on rural women’s treatment choice for EBC.
These factors were grouped into two domains: (i) patient-led psychosocial factors and (ii) surgeon-led factors. Patient-led psychosocial factors included: get rid of it now; beliefs and fears about cancer and radiotherapy; the body, breast and self; significant others; travel and support. Surgeon-led factors included: presenting and discussing recommendations; trust in the expertise and reputation of the surgeon; first impressions of the surgeon. Three key patterns were noted in the data: (i) patient-led psychosocial factors were more influential for the women who had mastectomy; (ii) surgeonled factors were more influential for the women who had BCS; (iii) a number of patient and surgeon-led factors were shared between the mastectomy and BCS groups (Table 3). Overall, participants were very clear and certain about the factors which influenced their surgical choice. In many cases, the main research question was answered in the
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al. Table 2 Participant profile BCS (n = 41)
%
Age (years) Mean (SD), 61 (11), 41– Min–Max 86 Self-reported tumour size (mm) Mean (SD), 18 (10), 2–40 Min–Max Time since surgery (months) Mean (SD), 6 (4), 1–17 Min–Max Country of birth Australia and 29 70 New Zealand 12 30 United Kingdom and Western Europe Distance to metropolitan area (km) 300 11 27 Marital status Married/partnered 28 70 Education Middle secondary 22 54 school or below 5 12 Secondary school/trade /diploma/certificate University 9 22 Employment status Paid work 17 41 Occupation Non-professional 34 83
Mastectomy (n = 29)
%
63 (10), 43–79
22 (14), 3–50
introductory question. When participants were probed about other factors, they clearly discounted the factors that had no influence on them. When asked to prioritize factors, they repeated the factors mentioned earlier in the interview. Although the results are presented as individual factors, participants usually discussed the factors as a combination, rather than individual factors.
4 (6), 1–28
25
86
4
14
5 17 7
17 59 24
19
65
17
59
4
14
8
27
15
52
24
83
Patient-led psychosocial factors – Mastectomy and BCS groups Get rid of it now! The urgency to act emerged as a patient-led psychosocial factor shared by women in the mastectomy and BCS groups and dominated initial reactions to diagnosis and thoughts about treatment. Women started formulating ideas about surgical treatment prior to speaking with a surgeon. Initial thinking and rationale were characterized by urgency, a ‘get rid of it now’ imperative. Both groups had a common reaction and a focus on ‘doing anything’ and ‘quickly.’ This sense of urgency related to survival driven by fear associated with the spread of cancer and their desire to make a quick recovery and ‘get back to life’. Both groups saw their surgical choice as a means of achieving a ‘quick recovery’. Patient-led psychosocial factors – Mastectomy group
Table 3 Factors identified by mastectomy (MAS) and breast conserving surgery (BCS) groups
Patient-led psychosocial factors Get rid of it and now! Beliefs and fears about cancer and radiotherapy Body, breast and self Significant others Travel and social support Surgeon-led factors Presenting and discussing recommendations Trust in expertise and reputation First impressions build confidence
ª 2014 John Wiley & Sons Ltd Health Expectations
MAS
BCS
U U
U
U U U U U U
U U
Fears and beliefs about cancer and radiotherapy The mastectomy group’s fears and beliefs about cancer centred on cancer recurring, and mastectomy was seen as the most effective way of reducing the risk of cancer recurrence. They believed that by removing all the breast tissue, the chance of the cancer returning, existing or new, would be gone and this would give them ‘peace of mind’. They also saw mastectomy as a ‘one stop shop’. By undertaking this option, they believed they would not need to have any further surgery. The mastectomy group also had a greater fear of radiotherapy. They had formed the belief that radiotherapy ‘made you sick’. While they also
5
6 Rural women’s views of breast cancer treatment, E Ristevski et al.
recognized chemotherapy made you sick, it was a more familiar treatment option.
bad it was going to be that because of my family history (mastectomy).
The radiotherapy frightened me. I accepted that I would have to have chemo, but I thought if I could get out of having the radiotherapy that would be good. I know it’s not painful, the thought of it was scary (mastectomy).
The mastectomy group also identified negative treatment experiences of their relatives and wanted to avoid the same situation.
Body, breast and self Women’s views about the body and/or breast did not necessarily change after diagnosis. In fact, it reinforced women’s desire to keep or remove the breast. The mastectomy group described themselves as being generally uncomfortable with their body even prior to diagnosis. They described their body as overweight, too thin or not attractive, and their breast/s as too big, too small, mismatching or too lumpy. The mastectomy group also needed to satisfy themselves, and others, of their choice for mastectomy. They spoke positively, ‘it didn’t bother or upset me’, were philosophical, ‘I got the short straw’, and pragmatic, ‘this is what needs to be done’. They talked about being independent, they did not want to ‘rely on’ or ‘burden others’ and wanted to be seen as ‘strong’, ‘tough’ and as being their ‘own boss’.
Travel and social support The mastectomy group were less prepared to travel to the city for radiotherapy, and saw travel as an extra physical and emotional trauma at a time when they were feeling unwell. Mastectomy was the ‘least stressful’ option. They also wanted to be in a familiar environment, and the city was described as ‘lonely’, ‘isolating’ and ‘daunting’. Even when women had social supports in the city, they felt uncomfortable staying in someone else’s home during treatment. Differences in travel also emerged by locality with some women living closer to the city being less prepared to travel, therefore choosing mastectomy. These women were either older, living alone or had made up their mind that they did not want to travel back and forth each day or week for radiography. They described this as an ‘effort’ and an ‘inconvenience’ and did not want to be away from home. Patient-led psycho-social factors – BCS group
Significant others The experiences of significant others also appeared to influence how the mastectomy group evaluated their risk of cancer and opted for a treatment pathway that would avoid the pain and suffering they had seen other family endure. Their knowledge of family members who had breast cancer and other cancers influenced how they assessed their own risk of cancer. The mastectomy group associated various cancers in their immediate and extended family, females and males, and over a number of generations as part of their own history. Statements such as ‘cancer is raging in our family’ were used and getting cancer almost seemed to be inevitable. I was very philosophical about it because I felt that it was possibly inevitable, I just had it in the back of my mind if I was going to get anything
Although the urgency to act quickly was the main patient-led psychosocial factor shared between the mastectomy and BCS groups, the BCS group’s views around psychosocial issues provides insight into how they rationalized these factors in a different light. Fear of cancer recurrence and radiotherapy treatment was less of an issue for this group. They accepted the reassurance of the surgeon that BCS was the most appropriate treatment in removing all the cancer and the risk of recurrence was low, and saw recovery times after BCS as quicker than mastectomy. I thought a lumpectomy would be much less invasive. It would be easier to get over a surgery like that rather than having the mastectomy (BCS).
The BCS group were also generally not ready to lose their breast and saw mastectomy
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al.
as deforming. They qualified this, however, by stating they would have a mastectomy ‘if it was needed’ or suggested by the surgeon. They also held the view that they needed to justify their choice for BCS to themselves and others. There was a worry that others might see them as vain for wanting to keep their breast. The BCS group also spoke about a family history of breast cancer, yet acknowledged differences in their own diagnosis to that of relatives, and felt reassured of the prognostic outcomes discussed with the surgeon. The BCS group acknowledged advances in treatment and knew other people who had survived BCS. They’d survived. They were healthy, they were going about their lives, they said technology is wonderful, the survival rates have gone up with breast cancer (BCS).
The BCS group’s preparedness to travel was rationalized as ‘just part of country life’. It made accessing treatment more difficult and was inconvenient, but living in a rural area meant they had become accustomed to travelling frequently. Well, I mean you’ve got to travel wherever you go when you live in a small country town (BCS).
They also had a more positive attitude to being away from home and viewed their network of family or friends in the city as a positive and enabling factor in supporting them during radiotherapy. I say to my husband and anybody who asks me, ‘I’m going on holiday’, and treated it mentally as I am on holiday. No cooking, no shopping, just make your bed and have breakfast (BCS).
Surgeon-led factors – BCS group Presenting and discussing recommendations Surgeon-led factors were a significant influence for the BCS group. In particular, the manner in which the surgeon presented and discussed their recommendation for BCS was reported as being direct. The BCS group often said the surgeon only recommended BCS.
ª 2014 John Wiley & Sons Ltd Health Expectations
He [surgeon] thought we should do lumpectomy, because he said years ago it would be breast off, but he said this is the way we do it these days and explained (BCS).
In some instances where women in the BCS group initially thought they would have mastectomy, they were persuaded to have BCS. This was usually qualified with statements from the surgeon such as ‘why have the whole breast removed if it’s not necessary’ and ‘this is what we do now, this is standard practice’. When probed about their involvement in the decisionmaking process, the women in the BCS group still felt it was their decision to have BCS. Even though the surgeon usually only recommended BCS, they could still have rejected this recommendation. Surgeon-led factors – Mastectomy group Presenting and discussing recommendations It is also of interest to note that the mastectomy group experienced a different communication style in their encounter with the surgeon. The mastectomy group viewed the surgeon as neutral in how information was presented and surgical options discussed. With the exception of cases where the cosmetic effects of the surgery, and location and size of the tumour did not allow for BCS, the mastectomy group felt mastectomy and BCS were equally discussed, and the surgeon did not necessarily recommend one option over the other. He said, ‘Well we have options, and these are the options’. And he spelt them out to me very, very clearly so I understood exactly what he was talking about. And he didn’t influence me one way or the other in that he didn’t say you should have this or you should have that (mastectomy).
The mastectomy group were also confident about being involved in the decision-making and saw the surgical decision as being their own. Where the surgeon had provided a recommendation, they considered it but, ultimately, felt they decided on mastectomy. For women who were certain, they wanted a mastectomy, the discussion with the surgeon was a
7
8
Rural women’s views of breast cancer treatment, E Ristevski et al.
validation of their initial decision for mastectomy and they were not usually swayed in any other direction.
I found him very trusting from the start. I felt real comfortable and respected his decisions (BCS).
Discussion Surgeon-led factors – BCS and mastectomy groups Although it appeared that the surgeon discussed and presented surgical options with the BCS and mastectomy groups in two different styles, this did not seem to impact on women’s trust and confidence in the surgeon. Trust and confidence in the surgeon emerged as two surgeon-led factors shared by the BCS and mastectomy groups. Trust in the surgeon’s expertise and reputation Either directly or implied, the mastectomy and BCS groups trusted the expertise of the surgeon. Expertise was judged by the women’s ad hoc knowledge of how often the surgeon performed surgery, either general or specialized, and the surgeon’s reputation in the community. Reputation was validated by talking to family and friends who had, or had not, been treated by the surgeon, and other health professionals, particularly their family physician and breast care nurse. I had heard from several people that [surgeon] is probably one of the best surgeons in Victoria. One of the [breast care nurses] that I saw said ‘you wouldn’t get a better surgeon anywhere’ (mastectomy).
First impressions build confidence First impressions were also important in establishing the women’s trust in the surgeon and often women described knowing immediately if they had confidence in the surgeon. The surgeon’s approach was described as friendly, approachable and made them feel relaxed, comfortable and ‘put their mind at rest’. These attributes created greater confidence in the surgeon’s recommendation and the surgeon was perceived as acting in their best interest ‘to get the best outcome’. Words such as ‘beautiful’, ‘wonderful’, ‘empathetic’ and ‘sensational’ were often used to describe the surgeon.
Our study highlights two important findings: patient-led psychosocial factors and surgeon-led factors were both important influences in rural women’s surgical choice for EBC. We found these factors were expressed differently by the mastectomy and BCS groups and influenced decision-making in contrasting ways. Patient-led psychosocial factors had a strong influence in shaping the mastectomy group’s beliefs and perceptions of breast cancer treatment, and the fears and experiences they brought to the clinical encounter. Surgeon-led factors were also important in the surgical choice for both groups, but played different roles in the mastectomy and BCS groups. The surgeon’s recommendation for BCS was a strong influence for the BCS. Yet both groups’ view of the expertise and reputation of the surgeon, and their first impressions of the surgeon in the clinical encounter, were important in establishing their trust and confidence in the surgeon’s recommendations. Common to both groups, and dominating initial rationale for treatment, was the urgency to act quickly to remove the cancer, ‘get rid of it’, and take a treatment pathway that would get them back to their ‘normal life’. The notion of ‘getting rid of it’ (the cancer) is a coping strategy often associated with thoughts of survival.40–42 While choice for mastectomy is identified as a means of avoiding further treatment,13,23 in our study, BCS was also viewed as leading to a quick recovery and back to routine life. Our study also found a number of key differences between the two groups. The first was the fear of cancer recurrence and the perception of the risk of getting cancer was greater for the mastectomy group. In many studies, this has been found to be strongly associated with choice for mastectomy.10,13,14,23 However, many studies have also found that worry about recurrence is not necessarily based on accurate knowledge of risk or risk factors, but other concerns such as previous treatment experiences, family
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al.
history of breast cancer and perceptions of risk of cancer,43,44 as was found in our study. While both groups identified family history of breast cancer, the mastectomy group believed their family histories of cancer created an inevitable outcome that they too would develop breast cancer. The BCS group, in comparison, acknowledged changes in clinical practice and advances in treatment as differences between their situation and other family members. The second difference to emerge was the mastectomy group’s beliefs and fears about radiotherapy, and views about travelling, which negated the choice of BCS. Their strong resolve not to travel for treatment was not always based on ability to access radiotherapy or support away from home, but rather their choice to have a ‘less stressful’ treatment pathway. These findings are consistent with other studies in which these factors were identified as predictors of choice for mastectomy.10,13,14,23 In comparison, the BCS group had a positive attitude towards radiotherapy and viewed travel as part of living in a rural area. This attitude to travel was also described in another Australian study of rural patients with cancer.45 Our findings raise questions about women’s perceptions of rurality. The actual distance to radiotherapy was not always the key issue, rather, women expressed different perceptions and attitudes to travel. Like the findings of Sauerzapf et al.29 our study supports the view that travel and distance alone do not always impact on surgical choice. For example, some women in our study who lived closer to the city still chose mastectomy. This is an area which needs further investigation to examine how rural patients with cancer evaluate their access to treatment and how it impacts on their treatment decisions. The third difference between the groups related to women’s decision to keep or remove the breast, which was rationalized differently by both groups. The mastectomy group were determined to be positive, philosophical and practical about their decision. The commonly held view about rural stoicism was evident in the attitudes of this group. Interestingly, although the BCS group had a strong resolve to keep their breast,
ª 2014 John Wiley & Sons Ltd Health Expectations
they expressed worry that others might see them as vain for this and provided assurance that they would have a mastectomy if it was clinically necessary. While concern over losing a breast has been found to be a factor in choosing BCS,14,23 and in the choice of mastectomy not wanting to keep a breast,10 relating these choices to how they might be viewed by others raises questions about actual and perceived societal pressure to value or not value breasts once they are diseased. Finally, our study suggests evidence of a confounding issue for clinician–patient communication; when the surgeon leaves the decision open to the women, they can be likely to choose mastectomy, as was the case in our study.8–10 The mastectomy group felt the surgeon was neutral in their communication of information and believed the decision for mastectomy was their own. Even in cases where the surgeon only offered mastectomy, due to the size, location and cosmetic effects of the surgery, the women in the mastectomy group still felt the surgeon was neutral in how this information was communicated to them. While the surgeon appeared to play a more active role in their recommendation with the BCS group, these women still perceived that they had ownership of the decision and were satisfied with the decision-making process. This finding is consistent with Mendick et al.46 and O’Brien et al.47 who found that surgeons make decisions for patients, although patients generally felt ownership of the decisions because of the reasons surgeons gave, and because they felt they could refuse, which was the case in our study. Our study also revealed that both groups had a high regard for the surgeon’s reputation and consultation style, and while women did not explicitly indicate this influenced their decision, it may have implicitly influenced how they responded to information and communication in the consultation. There are limited studies with rural cohorts with which to compare this finding. General research into physician-patient relationships during breast cancer treatment and decision-making indicate women place a high value on trust in their physician to advise them accordingly, and see
9
10 Rural women’s views of breast cancer treatment, E Ristevski et al.
themselves as lay people. Deference to the surgeon was therefore not unusual.42,48,49 Women still, however, hold the belief that they are in control of the treatment decision-making process,10 as was the case in our study. There is also no strong evidence to indicate that rural women are more influenced by the quality of their relationship with the surgeon as compared to their metropolitan counterparts. Jones et al.50 found people in rural areas were as likely as people in urban areas to complain about health practitioners. The impact of the interpersonal relationship between rural physicians and patients is an area which requires further research to determine the extent to which the quality of the patient-practitioner relationship is important for rural women, as the influence of the surgeon appears to be a factor broadly impacting women with EBC.
Limitations Our study is limited in that it does not provide the surgeon’s account of these factors, and as other studies identify, there is incongruence between patient and practitioner perspectives of treatment experiences.46,48 Our study also relied on retrospective memories; therefore, the results may have been distorted by recall bias. While our study did not include a comparison group from a metropolitan area, we were able to compare factors from our research in rural women to those in metropolitan areas from other studies. The issue of being diagnosed with breast cancer appears to have a shared meaning across populations.
Conclusion/clinical implications The findings of our study have a number of implications for clinical practice. First, the recognition for urgency and acting quickly is shared by women in the mastectomy and BCS groups. While clinicians can advise women to take their time in making a decision, women’s fears, beliefs and prior experiences frame their thoughts early in the clinical encounter and these may carry through in the decision-
making process. Second, there might be a need to provide education to women about cancer recurrence and risk as their fears and beliefs can be inaccurate and dominate surgical choices. This is similar for beliefs about radiotherapy treatment; helping to dispel the myths and fears associated with radiotherapy treatment. As radiotherapy is becoming more available in rural areas of Australia, it might become more recognized and accepted as a conventional treatment, in much the same way as chemotherapy. Also, there is still debate in the literature about the impact of travel and access to radiotherapy, and clinicians need to elucidate from women how important a factor this is in their treatment decision-making. Third, while CPGs recommend BCS leads to better preservation of body image, for many women this might not be the case. Clinicians need to discuss with women the implications for psychological well-being of removing the breast. Fourth, clinicians need to acknowledge the influence they have on women’s treatment choices and ensure women receive support during this process. CPGs recommend women also seek counselling support from breast care nurses and/or the multidisciplinary care team during the decision-making process.4 Finally, these factors cannot be considered in isolation. If a patient-centred approach is to be taken, clinicians and patients need to work together to achieve the best outcome for the individual. There is a need to identify how important and influential the various factors are for rural women.
Acknowledgements Thank you to Helen Chambers and Rebecca Jones who provide assistance at various points during the study. Also to Joanne Campbell, Sue Burney and Joanne Brooker for providing feedback on drafts of this manuscript.
Funding Funding received from Monash University Faculty of Medicine, Nursing and Health Sciences Strategic Grant Scheme.
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al.
Conflict of interest The authors declare no conflict of interest.
12
References 13 1 Fisher B, Anderson S, Bryant J et al. Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer. New England Journal of Medicine, 2002; 347: 1233–1241. 2 Veronesi U, Cascinelli N, Mariani L et al. Twenty-year follow-up of a randomized study comparing breast-conserving surgery with radical mastectomy for early breast cancer. New England Journal of Medicine, 2002; 347: 1227–1232. 3 van Dongen J, Voogd A, Fentiman I et al. Long-term results of a randomized trial comparing breast-conserving therapy with mastectomy: European Organization for Research and Treatment of Cancer 10801 trial. Journal of the National Cancer Institute, 2000; 92: 1143–1150. 4 National Health & Medical Research Council, National Breast Cancer Centre. Clinical Practice Guidelines for the Management of Early Breast Cancer, 2nd edn. Canberra, ACT: Commonwealth of Australia, 2001. 5 National Institute for Health Care Excellence (NICE). Early and Locally Advanced Breast Cancer: Diagnosis and Treatment. Cardiff: National Collaborating Centre for Cancer, 2009. 6 National Comprehensive Cancer Network (NCCN). NCCN Clinical Practice Guidelines in Oncology: Breast Cancer Version 1.2014. Fort Washington, PA: National Comprehensive Cancer Network, 2014. 7 Boyle P, Levin B (eds). World Cancer Report 2008. Lyon, France: World Health Organization. International Agency for Research on Cancer, 2008. 8 Katz S, Lantz P, Janz N et al. Patient involvement in surgery treatment decisions for breast cancer. Journal of Clinical Oncology, 2005; 23: 5526–5533. 9 Caldon L, Walters S, Reed M. Changing trends in the decision-making preferences of women with early breast cancer. British Journal of Surgery, 2008; 95: 312–318. 10 Collins ED, Moore CP, Clay KF et al. Can women with early-stage breast cancer make an informed decision for mastectomy? Journal of Clinical Oncology, 2009; 27: 519–525. 11 Lantz P, Janz N, Fagerlin A et al. Satisfaction with surgery outcomes and the decision process in a population-based sample of women with breast
ª 2014 John Wiley & Sons Ltd Health Expectations
14
15
16
17
18
19
20
21
22
23
cancer. HSR: Health Services Research, 2005; 40: 745–767. Morrow M, Jagsi R, Alderman A et al. Surgeon recommendations and receipt of mastectomy for treatment of breast cancer. Journal of the American Medical Association, 2009; 302: 1551–1556. Mastaglia B, Kristjanson LJ. Factors influencing women’s decision for choice of surgery for Stage 1 and Stage II breast cancer in Western Australia. Journal of Advanced Nursing, 2001; 35: 836–847. Molenarr S, Oort F, Rutgers E, Luiten E, Mulder J, Haes HD. Predictors of patients’ choices for breast-conserving therapy or mastectomy: a prospective study. British Journal of Cancer, 2004; 90: 2123–2130. Temple W, Russell M, Parsons L et al. Conservation surgery for breast cancer as the preferred choice: a prospective analysis. Journal of Clinical Oncology, 2006; 24: 3367–3373. Dewis R, Gribbin J. Breast Cancer: Diagnosis and Treatment. An Assessment of Need. Cardiff: National Collaborating Centre for Cancer, 2009. Dragun A, Huang B, Tucker T, Spanos W. Increasing mastectomy rates among all age groups for early stage breast cancer: A 10-year study of surgical choice. The Breast Journal, 2012; 18: 318–325. Meilleur A, Subramanian S, Plascak J, Fisher J, Paskett E, Lamont E. Rural residence and cancer outcomes in the united states: issues and challenges. Cancer Epidemiology, Biomarkers & Prevention, 2013; 22: 1657–1667. Peltoniemi P, Huhtala H, Holli K, Pylkk€ anen L. Effect of surgeon’s caseload on the quality of surgery and breast cancer recurrence. The Breast, 2012; 21: 539–543. Ingrama D, McEvoyb S, Byrnec M, Fritschid L, Josephe D, Jamrozikf K. Surgical caseload and outcomes for women with invasive breast cancer treated in Western Australia. The Breast, 2005; 14: 11–17. Roder D, Zorbas H, Kollias J et al. Factors predictive of treatment by Australian breast surgeons of invasive female breast cancer by mastectomy rather than breast conserving surgery. Asian Pacific Journal of Cancer Prevention, 2013; 14: 539–645. White VM, Pruden M, Giles GG et al. The management of early breast carcinoma before and after the introduction of clinical practice guidelines. Cancer, 2004; 101: 476–485. Ballinger RS, Fortes MK, Lawrence G, Fallowfield L. Patients’ decision-making in a UK specialist centre with high mastectomy rates. The Breast, 2008; 17: 574–579.
11
12
Rural women’s views of breast cancer treatment, E Ristevski et al. 24 Fallowfield L. Psychosocial aspects of risk appraisal. Breast Cancer Research, 2008; 10(Suppl 4): S14–S16. 25 Howard AF, Balneaves LG, Bottorff JL. Women’s decision making about risk-reducing strategies in the context of hereditary breast and ovarian cancer: a systematic review. Journal of Genetic Counselling, 2009; 18: 578–597. 26 Scoggins J, Fedorenk C, Donahue S, Buchwald D, Blough D, Damsey S. Is distance to provider a barrier to care for medicaid patients with breast, colorectal, or lung cancer? The Journal of Rural Health, 2012; 28: 54–62. 27 Tyldesley S, McGahany C. Utilisation of radiotherapy in rural and urban areas in British Columbia compared with evidence-based estimates of radiotherapy needs for patients with breast, prostate and lung cancer. Clinical Oncology, 2010; 22: 526–532. 28 Celaya M, Rees J, Gibson J, Riddle B, Greenberg E. Travel distance and season of diagnosis affect treatment choices for women with early-stage breast cancer in a predominantly rural population (United States). Cancer Causes and Control, 2006; 17: 851–856. 29 Sauerzapf V, Jones A, Haynes R, Crawford S, Forman D. Travel time to radiotherapy and uptake of breast-conserving surgery for early stage cancer in Northern England. Health and Place, 2008; 14: 424–433. 30 Jacobs L, Kelley K, Rosson GD, Detrani M, Chang D. Disparities in urban and rural mastectomy populations: the effects of patient-and country-level factors on likelihood of receipt of mastectomy. Annals of Surgical Oncology, 2008; 15: 2644–2652. 31 Bettencourt BA, Schlegel RJ, Talley AE, LA M. The breast cancer experience of rural women: a literature review. Psycho-oncology, 2007; 16: 875–887. 32 Schroen A, Brenin D, Kelly M, Knaus W, Slingluff CJ. Impact of patient distance to radiation therapy on mastectomy use in early-stage breast cancer patients. Journal of Clinical Oncology, 2005; 23: 7074–7080. 33 Mitchell KJ, Fritschi L, Reid A et al. Rural-urban differences in the presentation, management and survival of breast cancer in Western Australia. The Breast, 2006; 15: 769–776. 34 Craft PS, Buckingham JM, Dahlstrom JE et al. Variation in the management of early breast cancer in rural and metropolitan centres: Implications for the organisation of rural cancer services. The Breast, 2010; 19: 396–401. 35 Gippsland Regional Integrated Cancer Services. Cancer Profile: Cancer in Gippsland, 2012. Available at: http://www.gha2.net.au/Grics/Content/ About-Grics/Cancer-Profile/Cancer-In-Gippsland, accessed 21 July 2014).
36 Coleman MP, Forman D, Bryant H et al. Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995–2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. Lancet, 2011; 377: 127–138. 37 Australian Institute of Health and Welfare, Cancer Australia. Breast Cancer in Australia: An Overview. Cancer series no. 71. Cat. no. CAN 67. Canberra, ACT: Australian Institute of Health and Welfare, 2012. 38 Taylor SJ, Bogdan R. Introduction to Qualitative Research Methods: A Guidebook and Resource. New York: John Wiley & Sons, Inc, 1998. 39 Ristevski E, Regan M, Birks D, Steers N, Byrne A. Patient or surgeon, who really decides? Factors influencing treatment choices of rural cancer patients. Asia-Pacific Journal of Clinical Oncology, 2009; 5: A164. 40 Stephens PA, Osowski M, Fidale MS, Spagnoli D. Identifying the educational needs and concerns of newly diagnosed patients with breast cancer after surgery. Clinical Journal of Oncology Nursing, 2008; 12: 253–258. 41 Heishman A. Get rid of it and Don’t Dwell on it: Explanatory Models and Experiences of Breast Cancer by Rural Women. Atlanta, GA: Georgia State University, 1999. 42 Swainston K, Campbell C, van Wersch A, Durning P. Treatment decision making in breast cancer: A longitudinal exploration of women’s experiences. British Journal of Health Psychology, 2012; 17: 155–170. 43 Katapodi MC, Dodd MJ, Facione NC, Humphreys JC, Lee KA. Why some women have an optimistic or a pessimistic bias about their breast cancer risk. Cancer Nursing, 2010; 33: 64–73. 44 Revenson TA, Pranikoff JR. A contextual approach to treatment decision making among breast cancer survivors. Health Psychology, 2005; 24 (4 Suppl): S93–S98. 45 McConigley R, Holloway K, Smith J et al. The diagnosis and treatment decisions of cancer patients in rural Western Australia. Cancer Nursing, 2011; 34: E1–E9. 46 Mendick N, Young B, Holcombe C, Salmon P. The ethics of responsibility and ownership in decision-making about treatment for breast cancer: Triangulation of consultation with patient and surgeon perspectives. Social Science & Medicine, 2010; 70: 1904–1911. 47 O’Brien MA, Ellis PM, Whelan TJ et al. Physician-related facilitators and barriers to patient involvement in treatment decision making in early stage breast cancer: perspectives of physicians and patients. Health Expectations, 2013; 16: 373–384.
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al. 48 Lansdown M, Martin L, Fallowfield L. Patient-physician interactions during early breast-cancer treatment: results from an international online survey. Current Medical Research and Opinion, 2008; 24: 1891–1904. 49 Ristevski E, Regan M, Birks D, Steers N, Byrne A, McGrail MR. Communicating about breast cancer: Rural women’s experience of interacting with their
ª 2014 John Wiley & Sons Ltd Health Expectations
surgeon. Australian Journal of Rural Health, 2012; 20: 22–28. 50 Jones J, Humphreys J, Wilson B. Do health and medical workforce shortages explain the lower rate of rural consumers’ complaints to Victoria’s Health Services Commissioner? Australian Journal of Rural Health, 2005; 13: 353–358.
13
A qualitative study of rural women’s views for the treatment of early breast cancer Eli Ristevski PhD BHlthSci (Hons),* Melanie Regan RN MNur Grad Dip Cancer Care BHlthSci (Nursing),* David Birks FRACS MHlthProfEdu,† Nicole Steers RN, Grad Cert Cancer Nursing, Oncology & Cancer Biology, Grad Cert Management, Business Administration & Management General‡ and Anny Byrne RN, MClinical Nursing (Oncology (Grad Cert Cancer Care BAppSci (Nursing)))§ *Monash University, School of Rural Health - Monash University Department of Rural and Indigenous Health, Moe, Victoria, Australia, †Monash University, School of Rural Health - Churchill, Churchill, Victoria, Australia, ‡Latrobe Community Health Service, Morwell, Victoria, Australia and §West Gippsland HealthCare Group, Warragul, Victoria, Australia
Abstract Correspondence Eli Ristevski PhD BHlthSci (Hons) Department of Rural and Indigenous Health Monash University School of Rural Health PO Box 973 Moe 3825 Vic. Australia E-mail: [email protected] Accepted for publication 5 September 2014 Keywords: breast cancer, patient, psychosocial, rural, surgeon, treatment
Aim Identify what factors rural women perceived to influence their surgical choice for EBC. Background Higher rates of mastectomy still remain for women with early breast cancer (EBC) in rural areas. While access to radiotherapy is a commonly identified barrier, there is growing debate around other factors which are also important influences on surgical choice. Methods Qualitative study with 70 interviews with women diagnosed with EBC in rural Gippsland, Australia. Twenty-nine women had a mastectomy and 41 had breast conserving surgery (BCS). Results Patient led psychosocial and surgeon led factors influenced surgical choice. Psychosocial factors were a greater influence for the mastectomy group. These included a high fear of cancer recurrence and radiotherapy, negative views of the body and breast, a family history of cancer, wanting to avoid the negative treatment experiences they had seen significant others go through, and not wanting to travel for treatment. Surgeon led factors were a greater influence for the BCS group, in particular, the direct recommendation made by the surgeon for BCS. For both groups, urgency to act was a shared psychosocial factor. Trust and confidence in the expertise and reputation of the surgeon and their consultation style were surgeon led factors shared by the groups. Conclusions To ensure women achieve the best treatment outcome, patients and clinicians need to work together to identify how important and influential the various factors are for the women and, if necessary, to seek support to ensure informed decisions are made.
ª 2014 John Wiley & Sons Ltd Health Expectations
1
2
Rural women’s views of breast cancer treatment, E Ristevski et al.
Introduction It has been long established that early breast cancer (EBC) can be treated in many instances with breast conserving surgery (BCS) followed by radiotherapy or mastectomy. Both treatments yield similar survival outcomes.1–3 Numerous clinical practice guidelines (CPG) recommend women be involved in the treatment decision-making process, and where appropriate, health professionals discuss both surgical options with women; offering a choice between the two approaches.4–6 Health professionals should also inform women that body image is better preserved with BCS.4 While the rate of BCS has significantly increased across the world,7 a number of studies have found patient involvement in the decision-making does not always lead to greater choice for BCS.8–11 When women use a more active decision-making style, and when surgeons involve women in the decisionmaking process, this has been associated with greater use of mastectomy.8,9,12 Furthermore, surgeon recommendation has also been found to be an important influence on surgical choice.12–15 For women in rural areas, where mastectomy rates still remain higher than metropolitan areas,7,16–18 the relationship and communication with the surgeon is an integral part of the decision-making process, particularly as there are limited service options. While surgeon caseload and specialization have been attributed to higher rates of mastectomy in rural areas,19,20 this data does not always account for patient preferences. Roder et al.21 found surgeons with low caseloads and their patients have differing attitudes to surgical options, and access to radiotherapy services is a possible explanation for higher rates. While White et al.22 found patients’ concern about cancer recurrence and large tumour size were factors surgeons gave for continued mastectomies, factors such as wanting to return home sooner, avoiding possible further surgery, possibility of a complete cure, peace of mind, fear of recurrence, body image and fear of radio-
therapy treatment and its side-effects have also been shown to be important factors in women’s choice for mastectomy.10,14,23–25 Some studies attribute distance and travel to radiotherapy to higher rates of mastectomy, but other researchers have found this is not always the case.26–32 This raises the question, what factors are important to rural women in choosing a surgical option and how influential is the surgeon compared to other factors? Large scale studies of breast cancer treatment in rural areas have used cancer registry or hospital databases to identify factors for choice of breast cancer treatment,28,29,32–34 but fail to account for the patient voice in this process. Given the limited research of the experiences of rural women in the clinical encounter when making a surgical choice, the aim of our study was to identify what factors rural women perceived to influence their surgical choice for EBC. The study was conducted in the Gippsland region, Victoria, Australia. Cancer is the leading cause of death in Gippsland. The average number of people newly diagnosed with cancer between 2005 and 2011 was 1585, of which 12% were breast cancer cases.35 Travel to the nearest radiotherapy centre ranged between 97–518 kilometers. Breast surgery in the region was performed in five health services by five general surgeons and one visiting specialist breast surgeon. The visiting surgeon was the only female surgeon to provide breast surgery in the region. While Australia is a world leader in cancer control and has one of the best cancer survival rates in the world,36 the disparity in survival outcomes and management of cancer for people in rural areas still remains.37 Understanding why mastectomy rates still remain high in rural areas, particularly in a country with a universal health-care system (delivered under Medicare) and CPG for the management of EBC that have been in place since 2001,4 may help to better inform our understanding of the influence of patient, clinician or health system factors in treatment choices for people in rural areas.
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al.
Methods Participants Stratified purposive sampling was used to recruit participants from the six geographic regions in the Gippsland area. Eligibility included: 1. a confirmed diagnosis of EBC as defined by the CPG4; 2. eligible for both surgical options, mastectomy and BCS, 3. no previous diagnosis of breast cancer, 4. consulted a surgeon in the region for diagnosis and/or treatment, 5. lived in the Gippsland region at the time of treatment and 6. able to give informed consent. Gippsland Surgeons (n = 6), Breast Care Nurses (n = 5) and Nurse Counsellors from Gippsland BreastScreen (n = 2) identified women who met the study criteria and contacted them by telephone to explain the study aims and what was involved. Those women who were interested were sent an information and consent form. Procedure Ethical approval was obtained from four hospital, one mammography screening service and one university ethics committees. Semi-structured interviews were conducted. Interviews were between 30 and 90 minutes, recorded and transcribed verbatim. As the interviews were conducted by multiple interviewers, the research team met as a group prior to any data collection to discuss the wording, meaning and interpretation of the research questions. This ensured consistency in the questions being asked and following up on incomplete answers. Interviewers were not involved in the care of any of the participants in the study. Interviews began with an introductory question about diagnosis followed by the main research question; ‘What things helped you decide what type of operation/treatment to have?’ This open-ended question let the woman explore influences
ª 2014 John Wiley & Sons Ltd Health Expectations
without any prompting. Probing questions followed which explored factors identified in the literature and discussions the researchers had with clinical experts. Near the end of the interview, the researcher asked the participant to prioritize the factors. This was important to distinguish if the prompt questions had influenced the response. As part of the member checking process, the researcher then summarized the participant’s responses and asked if they had been accurately understood by the researcher (Table 1). Participants also completed a socio-demographic questionnaire. Data analysis Taylor and Bogdan’s38 three-phased approach to thematic analysis was used to analyse the interviews. To assist in sorting and managing the data in each phase of the analysis, the transcribed interviews and demographic details were entered into an Access database. Data analysis was triangulated among the five chief investigators and a research assistant (RJ). In phase one (discovery), ER and RJ read the transcripts for individual words and phrases and grouped these into preliminary concepts. Similarities and differences, and emerging patterns in the concepts, were identified and formed preliminary themes. In phase two (coding), ER, RJ and MR further refined the themes by examining relationships, making comparisons and noting negative cases between the themes. During this process, themes were collapsed, expanded or new ones created. These data were scrutinized until no new themes or ‘negative’ cases emerged (saturation). In the final phase (discounting), ER, MR, DB, NS and AB looked for variation and anomalies in the data. As data collection and analysis was triangulated, this stage of the analysis involved reviewing each researcher’s personal perspective (reflexivity). This process ensured the themes were comprehensive and the quotations were not skewed. Preliminary results were presented at a University colloquium and at a national cancer symposium.39 The process aided in reviewing the rigour of the data collection, analysis and interpretation. Peer critique
3
4 Rural women’s views of breast cancer treatment, E Ristevski et al. Table 1 Interview schedule Interview structure
Example questions
Introductory questions
Qu: How did you first discover you had breast cancer? Who confirmed your diagnosis? What were your thoughts and feelings at the time? Ice breaker questions. Qu: What things helped you decide what type of operation/treatment to have? This open-ended question let the woman explore influences without any probing questions. Qu: Were any of the following a factor in your decision to have mastectomy/Breast Conservation Surgery? Health professionals Clinical features of cancer and cancer treatment Family, Friends and social group Work, career Financial constraints Rural location – travel, distance, not specialist services, axillary financial costs of travel Carer responsibilities Body image Media Ethnicity, social and cultural expectations Knowledge of breast cancer and its treatment Factors identified in the literature and from discussions with clinical experts. Qu: Can you prioritize; were any of these factors more important than others? This question was important to identify if the probing questions had any influence on the participant’s response. Qu: Let me summarize what seems to be the key influences for you, let me know if this is a correct interpretation As part of the member checking process, the researcher then summarized the participant’s responses and asked if they were accurately understood by the researcher.
Main research question Probing questions
• • • • • • • • • • •
Prioritizing factors
Summary of factors
assisted in refining the themes generated in phase three, ensuring the interpretation and the conclusions made in the study were plausible, supported by evidence in the literature and relevant to clinical practice.
Results Seventy women consented to participate in the study. Twenty-nine women had a mastectomy, and 41 had BCS. There were no significant differences in clinical or socio-demographic characteristics between the mastectomy and BCS groups (Table 2). On average, participants were aged in their early sixties, were in a relationship, had completed up to middle secondary school and were not in paid work. Of those in paid work, the majority were in nonprofessional occupations (Table 2). Eight factors emerged as key influences on rural women’s treatment choice for EBC.
These factors were grouped into two domains: (i) patient-led psychosocial factors and (ii) surgeon-led factors. Patient-led psychosocial factors included: get rid of it now; beliefs and fears about cancer and radiotherapy; the body, breast and self; significant others; travel and support. Surgeon-led factors included: presenting and discussing recommendations; trust in the expertise and reputation of the surgeon; first impressions of the surgeon. Three key patterns were noted in the data: (i) patient-led psychosocial factors were more influential for the women who had mastectomy; (ii) surgeonled factors were more influential for the women who had BCS; (iii) a number of patient and surgeon-led factors were shared between the mastectomy and BCS groups (Table 3). Overall, participants were very clear and certain about the factors which influenced their surgical choice. In many cases, the main research question was answered in the
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al. Table 2 Participant profile BCS (n = 41)
%
Age (years) Mean (SD), 61 (11), 41– Min–Max 86 Self-reported tumour size (mm) Mean (SD), 18 (10), 2–40 Min–Max Time since surgery (months) Mean (SD), 6 (4), 1–17 Min–Max Country of birth Australia and 29 70 New Zealand 12 30 United Kingdom and Western Europe Distance to metropolitan area (km) 300 11 27 Marital status Married/partnered 28 70 Education Middle secondary 22 54 school or below 5 12 Secondary school/trade /diploma/certificate University 9 22 Employment status Paid work 17 41 Occupation Non-professional 34 83
Mastectomy (n = 29)
%
63 (10), 43–79
22 (14), 3–50
introductory question. When participants were probed about other factors, they clearly discounted the factors that had no influence on them. When asked to prioritize factors, they repeated the factors mentioned earlier in the interview. Although the results are presented as individual factors, participants usually discussed the factors as a combination, rather than individual factors.
4 (6), 1–28
25
86
4
14
5 17 7
17 59 24
19
65
17
59
4
14
8
27
15
52
24
83
Patient-led psychosocial factors – Mastectomy and BCS groups Get rid of it now! The urgency to act emerged as a patient-led psychosocial factor shared by women in the mastectomy and BCS groups and dominated initial reactions to diagnosis and thoughts about treatment. Women started formulating ideas about surgical treatment prior to speaking with a surgeon. Initial thinking and rationale were characterized by urgency, a ‘get rid of it now’ imperative. Both groups had a common reaction and a focus on ‘doing anything’ and ‘quickly.’ This sense of urgency related to survival driven by fear associated with the spread of cancer and their desire to make a quick recovery and ‘get back to life’. Both groups saw their surgical choice as a means of achieving a ‘quick recovery’. Patient-led psychosocial factors – Mastectomy group
Table 3 Factors identified by mastectomy (MAS) and breast conserving surgery (BCS) groups
Patient-led psychosocial factors Get rid of it and now! Beliefs and fears about cancer and radiotherapy Body, breast and self Significant others Travel and social support Surgeon-led factors Presenting and discussing recommendations Trust in expertise and reputation First impressions build confidence
ª 2014 John Wiley & Sons Ltd Health Expectations
MAS
BCS
U U
U
U U U U U U
U U
Fears and beliefs about cancer and radiotherapy The mastectomy group’s fears and beliefs about cancer centred on cancer recurring, and mastectomy was seen as the most effective way of reducing the risk of cancer recurrence. They believed that by removing all the breast tissue, the chance of the cancer returning, existing or new, would be gone and this would give them ‘peace of mind’. They also saw mastectomy as a ‘one stop shop’. By undertaking this option, they believed they would not need to have any further surgery. The mastectomy group also had a greater fear of radiotherapy. They had formed the belief that radiotherapy ‘made you sick’. While they also
5
6 Rural women’s views of breast cancer treatment, E Ristevski et al.
recognized chemotherapy made you sick, it was a more familiar treatment option.
bad it was going to be that because of my family history (mastectomy).
The radiotherapy frightened me. I accepted that I would have to have chemo, but I thought if I could get out of having the radiotherapy that would be good. I know it’s not painful, the thought of it was scary (mastectomy).
The mastectomy group also identified negative treatment experiences of their relatives and wanted to avoid the same situation.
Body, breast and self Women’s views about the body and/or breast did not necessarily change after diagnosis. In fact, it reinforced women’s desire to keep or remove the breast. The mastectomy group described themselves as being generally uncomfortable with their body even prior to diagnosis. They described their body as overweight, too thin or not attractive, and their breast/s as too big, too small, mismatching or too lumpy. The mastectomy group also needed to satisfy themselves, and others, of their choice for mastectomy. They spoke positively, ‘it didn’t bother or upset me’, were philosophical, ‘I got the short straw’, and pragmatic, ‘this is what needs to be done’. They talked about being independent, they did not want to ‘rely on’ or ‘burden others’ and wanted to be seen as ‘strong’, ‘tough’ and as being their ‘own boss’.
Travel and social support The mastectomy group were less prepared to travel to the city for radiotherapy, and saw travel as an extra physical and emotional trauma at a time when they were feeling unwell. Mastectomy was the ‘least stressful’ option. They also wanted to be in a familiar environment, and the city was described as ‘lonely’, ‘isolating’ and ‘daunting’. Even when women had social supports in the city, they felt uncomfortable staying in someone else’s home during treatment. Differences in travel also emerged by locality with some women living closer to the city being less prepared to travel, therefore choosing mastectomy. These women were either older, living alone or had made up their mind that they did not want to travel back and forth each day or week for radiography. They described this as an ‘effort’ and an ‘inconvenience’ and did not want to be away from home. Patient-led psycho-social factors – BCS group
Significant others The experiences of significant others also appeared to influence how the mastectomy group evaluated their risk of cancer and opted for a treatment pathway that would avoid the pain and suffering they had seen other family endure. Their knowledge of family members who had breast cancer and other cancers influenced how they assessed their own risk of cancer. The mastectomy group associated various cancers in their immediate and extended family, females and males, and over a number of generations as part of their own history. Statements such as ‘cancer is raging in our family’ were used and getting cancer almost seemed to be inevitable. I was very philosophical about it because I felt that it was possibly inevitable, I just had it in the back of my mind if I was going to get anything
Although the urgency to act quickly was the main patient-led psychosocial factor shared between the mastectomy and BCS groups, the BCS group’s views around psychosocial issues provides insight into how they rationalized these factors in a different light. Fear of cancer recurrence and radiotherapy treatment was less of an issue for this group. They accepted the reassurance of the surgeon that BCS was the most appropriate treatment in removing all the cancer and the risk of recurrence was low, and saw recovery times after BCS as quicker than mastectomy. I thought a lumpectomy would be much less invasive. It would be easier to get over a surgery like that rather than having the mastectomy (BCS).
The BCS group were also generally not ready to lose their breast and saw mastectomy
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al.
as deforming. They qualified this, however, by stating they would have a mastectomy ‘if it was needed’ or suggested by the surgeon. They also held the view that they needed to justify their choice for BCS to themselves and others. There was a worry that others might see them as vain for wanting to keep their breast. The BCS group also spoke about a family history of breast cancer, yet acknowledged differences in their own diagnosis to that of relatives, and felt reassured of the prognostic outcomes discussed with the surgeon. The BCS group acknowledged advances in treatment and knew other people who had survived BCS. They’d survived. They were healthy, they were going about their lives, they said technology is wonderful, the survival rates have gone up with breast cancer (BCS).
The BCS group’s preparedness to travel was rationalized as ‘just part of country life’. It made accessing treatment more difficult and was inconvenient, but living in a rural area meant they had become accustomed to travelling frequently. Well, I mean you’ve got to travel wherever you go when you live in a small country town (BCS).
They also had a more positive attitude to being away from home and viewed their network of family or friends in the city as a positive and enabling factor in supporting them during radiotherapy. I say to my husband and anybody who asks me, ‘I’m going on holiday’, and treated it mentally as I am on holiday. No cooking, no shopping, just make your bed and have breakfast (BCS).
Surgeon-led factors – BCS group Presenting and discussing recommendations Surgeon-led factors were a significant influence for the BCS group. In particular, the manner in which the surgeon presented and discussed their recommendation for BCS was reported as being direct. The BCS group often said the surgeon only recommended BCS.
ª 2014 John Wiley & Sons Ltd Health Expectations
He [surgeon] thought we should do lumpectomy, because he said years ago it would be breast off, but he said this is the way we do it these days and explained (BCS).
In some instances where women in the BCS group initially thought they would have mastectomy, they were persuaded to have BCS. This was usually qualified with statements from the surgeon such as ‘why have the whole breast removed if it’s not necessary’ and ‘this is what we do now, this is standard practice’. When probed about their involvement in the decisionmaking process, the women in the BCS group still felt it was their decision to have BCS. Even though the surgeon usually only recommended BCS, they could still have rejected this recommendation. Surgeon-led factors – Mastectomy group Presenting and discussing recommendations It is also of interest to note that the mastectomy group experienced a different communication style in their encounter with the surgeon. The mastectomy group viewed the surgeon as neutral in how information was presented and surgical options discussed. With the exception of cases where the cosmetic effects of the surgery, and location and size of the tumour did not allow for BCS, the mastectomy group felt mastectomy and BCS were equally discussed, and the surgeon did not necessarily recommend one option over the other. He said, ‘Well we have options, and these are the options’. And he spelt them out to me very, very clearly so I understood exactly what he was talking about. And he didn’t influence me one way or the other in that he didn’t say you should have this or you should have that (mastectomy).
The mastectomy group were also confident about being involved in the decision-making and saw the surgical decision as being their own. Where the surgeon had provided a recommendation, they considered it but, ultimately, felt they decided on mastectomy. For women who were certain, they wanted a mastectomy, the discussion with the surgeon was a
7
8
Rural women’s views of breast cancer treatment, E Ristevski et al.
validation of their initial decision for mastectomy and they were not usually swayed in any other direction.
I found him very trusting from the start. I felt real comfortable and respected his decisions (BCS).
Discussion Surgeon-led factors – BCS and mastectomy groups Although it appeared that the surgeon discussed and presented surgical options with the BCS and mastectomy groups in two different styles, this did not seem to impact on women’s trust and confidence in the surgeon. Trust and confidence in the surgeon emerged as two surgeon-led factors shared by the BCS and mastectomy groups. Trust in the surgeon’s expertise and reputation Either directly or implied, the mastectomy and BCS groups trusted the expertise of the surgeon. Expertise was judged by the women’s ad hoc knowledge of how often the surgeon performed surgery, either general or specialized, and the surgeon’s reputation in the community. Reputation was validated by talking to family and friends who had, or had not, been treated by the surgeon, and other health professionals, particularly their family physician and breast care nurse. I had heard from several people that [surgeon] is probably one of the best surgeons in Victoria. One of the [breast care nurses] that I saw said ‘you wouldn’t get a better surgeon anywhere’ (mastectomy).
First impressions build confidence First impressions were also important in establishing the women’s trust in the surgeon and often women described knowing immediately if they had confidence in the surgeon. The surgeon’s approach was described as friendly, approachable and made them feel relaxed, comfortable and ‘put their mind at rest’. These attributes created greater confidence in the surgeon’s recommendation and the surgeon was perceived as acting in their best interest ‘to get the best outcome’. Words such as ‘beautiful’, ‘wonderful’, ‘empathetic’ and ‘sensational’ were often used to describe the surgeon.
Our study highlights two important findings: patient-led psychosocial factors and surgeon-led factors were both important influences in rural women’s surgical choice for EBC. We found these factors were expressed differently by the mastectomy and BCS groups and influenced decision-making in contrasting ways. Patient-led psychosocial factors had a strong influence in shaping the mastectomy group’s beliefs and perceptions of breast cancer treatment, and the fears and experiences they brought to the clinical encounter. Surgeon-led factors were also important in the surgical choice for both groups, but played different roles in the mastectomy and BCS groups. The surgeon’s recommendation for BCS was a strong influence for the BCS. Yet both groups’ view of the expertise and reputation of the surgeon, and their first impressions of the surgeon in the clinical encounter, were important in establishing their trust and confidence in the surgeon’s recommendations. Common to both groups, and dominating initial rationale for treatment, was the urgency to act quickly to remove the cancer, ‘get rid of it’, and take a treatment pathway that would get them back to their ‘normal life’. The notion of ‘getting rid of it’ (the cancer) is a coping strategy often associated with thoughts of survival.40–42 While choice for mastectomy is identified as a means of avoiding further treatment,13,23 in our study, BCS was also viewed as leading to a quick recovery and back to routine life. Our study also found a number of key differences between the two groups. The first was the fear of cancer recurrence and the perception of the risk of getting cancer was greater for the mastectomy group. In many studies, this has been found to be strongly associated with choice for mastectomy.10,13,14,23 However, many studies have also found that worry about recurrence is not necessarily based on accurate knowledge of risk or risk factors, but other concerns such as previous treatment experiences, family
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al.
history of breast cancer and perceptions of risk of cancer,43,44 as was found in our study. While both groups identified family history of breast cancer, the mastectomy group believed their family histories of cancer created an inevitable outcome that they too would develop breast cancer. The BCS group, in comparison, acknowledged changes in clinical practice and advances in treatment as differences between their situation and other family members. The second difference to emerge was the mastectomy group’s beliefs and fears about radiotherapy, and views about travelling, which negated the choice of BCS. Their strong resolve not to travel for treatment was not always based on ability to access radiotherapy or support away from home, but rather their choice to have a ‘less stressful’ treatment pathway. These findings are consistent with other studies in which these factors were identified as predictors of choice for mastectomy.10,13,14,23 In comparison, the BCS group had a positive attitude towards radiotherapy and viewed travel as part of living in a rural area. This attitude to travel was also described in another Australian study of rural patients with cancer.45 Our findings raise questions about women’s perceptions of rurality. The actual distance to radiotherapy was not always the key issue, rather, women expressed different perceptions and attitudes to travel. Like the findings of Sauerzapf et al.29 our study supports the view that travel and distance alone do not always impact on surgical choice. For example, some women in our study who lived closer to the city still chose mastectomy. This is an area which needs further investigation to examine how rural patients with cancer evaluate their access to treatment and how it impacts on their treatment decisions. The third difference between the groups related to women’s decision to keep or remove the breast, which was rationalized differently by both groups. The mastectomy group were determined to be positive, philosophical and practical about their decision. The commonly held view about rural stoicism was evident in the attitudes of this group. Interestingly, although the BCS group had a strong resolve to keep their breast,
ª 2014 John Wiley & Sons Ltd Health Expectations
they expressed worry that others might see them as vain for this and provided assurance that they would have a mastectomy if it was clinically necessary. While concern over losing a breast has been found to be a factor in choosing BCS,14,23 and in the choice of mastectomy not wanting to keep a breast,10 relating these choices to how they might be viewed by others raises questions about actual and perceived societal pressure to value or not value breasts once they are diseased. Finally, our study suggests evidence of a confounding issue for clinician–patient communication; when the surgeon leaves the decision open to the women, they can be likely to choose mastectomy, as was the case in our study.8–10 The mastectomy group felt the surgeon was neutral in their communication of information and believed the decision for mastectomy was their own. Even in cases where the surgeon only offered mastectomy, due to the size, location and cosmetic effects of the surgery, the women in the mastectomy group still felt the surgeon was neutral in how this information was communicated to them. While the surgeon appeared to play a more active role in their recommendation with the BCS group, these women still perceived that they had ownership of the decision and were satisfied with the decision-making process. This finding is consistent with Mendick et al.46 and O’Brien et al.47 who found that surgeons make decisions for patients, although patients generally felt ownership of the decisions because of the reasons surgeons gave, and because they felt they could refuse, which was the case in our study. Our study also revealed that both groups had a high regard for the surgeon’s reputation and consultation style, and while women did not explicitly indicate this influenced their decision, it may have implicitly influenced how they responded to information and communication in the consultation. There are limited studies with rural cohorts with which to compare this finding. General research into physician-patient relationships during breast cancer treatment and decision-making indicate women place a high value on trust in their physician to advise them accordingly, and see
9
10 Rural women’s views of breast cancer treatment, E Ristevski et al.
themselves as lay people. Deference to the surgeon was therefore not unusual.42,48,49 Women still, however, hold the belief that they are in control of the treatment decision-making process,10 as was the case in our study. There is also no strong evidence to indicate that rural women are more influenced by the quality of their relationship with the surgeon as compared to their metropolitan counterparts. Jones et al.50 found people in rural areas were as likely as people in urban areas to complain about health practitioners. The impact of the interpersonal relationship between rural physicians and patients is an area which requires further research to determine the extent to which the quality of the patient-practitioner relationship is important for rural women, as the influence of the surgeon appears to be a factor broadly impacting women with EBC.
Limitations Our study is limited in that it does not provide the surgeon’s account of these factors, and as other studies identify, there is incongruence between patient and practitioner perspectives of treatment experiences.46,48 Our study also relied on retrospective memories; therefore, the results may have been distorted by recall bias. While our study did not include a comparison group from a metropolitan area, we were able to compare factors from our research in rural women to those in metropolitan areas from other studies. The issue of being diagnosed with breast cancer appears to have a shared meaning across populations.
Conclusion/clinical implications The findings of our study have a number of implications for clinical practice. First, the recognition for urgency and acting quickly is shared by women in the mastectomy and BCS groups. While clinicians can advise women to take their time in making a decision, women’s fears, beliefs and prior experiences frame their thoughts early in the clinical encounter and these may carry through in the decision-
making process. Second, there might be a need to provide education to women about cancer recurrence and risk as their fears and beliefs can be inaccurate and dominate surgical choices. This is similar for beliefs about radiotherapy treatment; helping to dispel the myths and fears associated with radiotherapy treatment. As radiotherapy is becoming more available in rural areas of Australia, it might become more recognized and accepted as a conventional treatment, in much the same way as chemotherapy. Also, there is still debate in the literature about the impact of travel and access to radiotherapy, and clinicians need to elucidate from women how important a factor this is in their treatment decision-making. Third, while CPGs recommend BCS leads to better preservation of body image, for many women this might not be the case. Clinicians need to discuss with women the implications for psychological well-being of removing the breast. Fourth, clinicians need to acknowledge the influence they have on women’s treatment choices and ensure women receive support during this process. CPGs recommend women also seek counselling support from breast care nurses and/or the multidisciplinary care team during the decision-making process.4 Finally, these factors cannot be considered in isolation. If a patient-centred approach is to be taken, clinicians and patients need to work together to achieve the best outcome for the individual. There is a need to identify how important and influential the various factors are for rural women.
Acknowledgements Thank you to Helen Chambers and Rebecca Jones who provide assistance at various points during the study. Also to Joanne Campbell, Sue Burney and Joanne Brooker for providing feedback on drafts of this manuscript.
Funding Funding received from Monash University Faculty of Medicine, Nursing and Health Sciences Strategic Grant Scheme.
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al.
Conflict of interest The authors declare no conflict of interest.
12
References 13 1 Fisher B, Anderson S, Bryant J et al. Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer. New England Journal of Medicine, 2002; 347: 1233–1241. 2 Veronesi U, Cascinelli N, Mariani L et al. Twenty-year follow-up of a randomized study comparing breast-conserving surgery with radical mastectomy for early breast cancer. New England Journal of Medicine, 2002; 347: 1227–1232. 3 van Dongen J, Voogd A, Fentiman I et al. Long-term results of a randomized trial comparing breast-conserving therapy with mastectomy: European Organization for Research and Treatment of Cancer 10801 trial. Journal of the National Cancer Institute, 2000; 92: 1143–1150. 4 National Health & Medical Research Council, National Breast Cancer Centre. Clinical Practice Guidelines for the Management of Early Breast Cancer, 2nd edn. Canberra, ACT: Commonwealth of Australia, 2001. 5 National Institute for Health Care Excellence (NICE). Early and Locally Advanced Breast Cancer: Diagnosis and Treatment. Cardiff: National Collaborating Centre for Cancer, 2009. 6 National Comprehensive Cancer Network (NCCN). NCCN Clinical Practice Guidelines in Oncology: Breast Cancer Version 1.2014. Fort Washington, PA: National Comprehensive Cancer Network, 2014. 7 Boyle P, Levin B (eds). World Cancer Report 2008. Lyon, France: World Health Organization. International Agency for Research on Cancer, 2008. 8 Katz S, Lantz P, Janz N et al. Patient involvement in surgery treatment decisions for breast cancer. Journal of Clinical Oncology, 2005; 23: 5526–5533. 9 Caldon L, Walters S, Reed M. Changing trends in the decision-making preferences of women with early breast cancer. British Journal of Surgery, 2008; 95: 312–318. 10 Collins ED, Moore CP, Clay KF et al. Can women with early-stage breast cancer make an informed decision for mastectomy? Journal of Clinical Oncology, 2009; 27: 519–525. 11 Lantz P, Janz N, Fagerlin A et al. Satisfaction with surgery outcomes and the decision process in a population-based sample of women with breast
ª 2014 John Wiley & Sons Ltd Health Expectations
14
15
16
17
18
19
20
21
22
23
cancer. HSR: Health Services Research, 2005; 40: 745–767. Morrow M, Jagsi R, Alderman A et al. Surgeon recommendations and receipt of mastectomy for treatment of breast cancer. Journal of the American Medical Association, 2009; 302: 1551–1556. Mastaglia B, Kristjanson LJ. Factors influencing women’s decision for choice of surgery for Stage 1 and Stage II breast cancer in Western Australia. Journal of Advanced Nursing, 2001; 35: 836–847. Molenarr S, Oort F, Rutgers E, Luiten E, Mulder J, Haes HD. Predictors of patients’ choices for breast-conserving therapy or mastectomy: a prospective study. British Journal of Cancer, 2004; 90: 2123–2130. Temple W, Russell M, Parsons L et al. Conservation surgery for breast cancer as the preferred choice: a prospective analysis. Journal of Clinical Oncology, 2006; 24: 3367–3373. Dewis R, Gribbin J. Breast Cancer: Diagnosis and Treatment. An Assessment of Need. Cardiff: National Collaborating Centre for Cancer, 2009. Dragun A, Huang B, Tucker T, Spanos W. Increasing mastectomy rates among all age groups for early stage breast cancer: A 10-year study of surgical choice. The Breast Journal, 2012; 18: 318–325. Meilleur A, Subramanian S, Plascak J, Fisher J, Paskett E, Lamont E. Rural residence and cancer outcomes in the united states: issues and challenges. Cancer Epidemiology, Biomarkers & Prevention, 2013; 22: 1657–1667. Peltoniemi P, Huhtala H, Holli K, Pylkk€ anen L. Effect of surgeon’s caseload on the quality of surgery and breast cancer recurrence. The Breast, 2012; 21: 539–543. Ingrama D, McEvoyb S, Byrnec M, Fritschid L, Josephe D, Jamrozikf K. Surgical caseload and outcomes for women with invasive breast cancer treated in Western Australia. The Breast, 2005; 14: 11–17. Roder D, Zorbas H, Kollias J et al. Factors predictive of treatment by Australian breast surgeons of invasive female breast cancer by mastectomy rather than breast conserving surgery. Asian Pacific Journal of Cancer Prevention, 2013; 14: 539–645. White VM, Pruden M, Giles GG et al. The management of early breast carcinoma before and after the introduction of clinical practice guidelines. Cancer, 2004; 101: 476–485. Ballinger RS, Fortes MK, Lawrence G, Fallowfield L. Patients’ decision-making in a UK specialist centre with high mastectomy rates. The Breast, 2008; 17: 574–579.
11
12
Rural women’s views of breast cancer treatment, E Ristevski et al. 24 Fallowfield L. Psychosocial aspects of risk appraisal. Breast Cancer Research, 2008; 10(Suppl 4): S14–S16. 25 Howard AF, Balneaves LG, Bottorff JL. Women’s decision making about risk-reducing strategies in the context of hereditary breast and ovarian cancer: a systematic review. Journal of Genetic Counselling, 2009; 18: 578–597. 26 Scoggins J, Fedorenk C, Donahue S, Buchwald D, Blough D, Damsey S. Is distance to provider a barrier to care for medicaid patients with breast, colorectal, or lung cancer? The Journal of Rural Health, 2012; 28: 54–62. 27 Tyldesley S, McGahany C. Utilisation of radiotherapy in rural and urban areas in British Columbia compared with evidence-based estimates of radiotherapy needs for patients with breast, prostate and lung cancer. Clinical Oncology, 2010; 22: 526–532. 28 Celaya M, Rees J, Gibson J, Riddle B, Greenberg E. Travel distance and season of diagnosis affect treatment choices for women with early-stage breast cancer in a predominantly rural population (United States). Cancer Causes and Control, 2006; 17: 851–856. 29 Sauerzapf V, Jones A, Haynes R, Crawford S, Forman D. Travel time to radiotherapy and uptake of breast-conserving surgery for early stage cancer in Northern England. Health and Place, 2008; 14: 424–433. 30 Jacobs L, Kelley K, Rosson GD, Detrani M, Chang D. Disparities in urban and rural mastectomy populations: the effects of patient-and country-level factors on likelihood of receipt of mastectomy. Annals of Surgical Oncology, 2008; 15: 2644–2652. 31 Bettencourt BA, Schlegel RJ, Talley AE, LA M. The breast cancer experience of rural women: a literature review. Psycho-oncology, 2007; 16: 875–887. 32 Schroen A, Brenin D, Kelly M, Knaus W, Slingluff CJ. Impact of patient distance to radiation therapy on mastectomy use in early-stage breast cancer patients. Journal of Clinical Oncology, 2005; 23: 7074–7080. 33 Mitchell KJ, Fritschi L, Reid A et al. Rural-urban differences in the presentation, management and survival of breast cancer in Western Australia. The Breast, 2006; 15: 769–776. 34 Craft PS, Buckingham JM, Dahlstrom JE et al. Variation in the management of early breast cancer in rural and metropolitan centres: Implications for the organisation of rural cancer services. The Breast, 2010; 19: 396–401. 35 Gippsland Regional Integrated Cancer Services. Cancer Profile: Cancer in Gippsland, 2012. Available at: http://www.gha2.net.au/Grics/Content/ About-Grics/Cancer-Profile/Cancer-In-Gippsland, accessed 21 July 2014).
36 Coleman MP, Forman D, Bryant H et al. Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995–2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. Lancet, 2011; 377: 127–138. 37 Australian Institute of Health and Welfare, Cancer Australia. Breast Cancer in Australia: An Overview. Cancer series no. 71. Cat. no. CAN 67. Canberra, ACT: Australian Institute of Health and Welfare, 2012. 38 Taylor SJ, Bogdan R. Introduction to Qualitative Research Methods: A Guidebook and Resource. New York: John Wiley & Sons, Inc, 1998. 39 Ristevski E, Regan M, Birks D, Steers N, Byrne A. Patient or surgeon, who really decides? Factors influencing treatment choices of rural cancer patients. Asia-Pacific Journal of Clinical Oncology, 2009; 5: A164. 40 Stephens PA, Osowski M, Fidale MS, Spagnoli D. Identifying the educational needs and concerns of newly diagnosed patients with breast cancer after surgery. Clinical Journal of Oncology Nursing, 2008; 12: 253–258. 41 Heishman A. Get rid of it and Don’t Dwell on it: Explanatory Models and Experiences of Breast Cancer by Rural Women. Atlanta, GA: Georgia State University, 1999. 42 Swainston K, Campbell C, van Wersch A, Durning P. Treatment decision making in breast cancer: A longitudinal exploration of women’s experiences. British Journal of Health Psychology, 2012; 17: 155–170. 43 Katapodi MC, Dodd MJ, Facione NC, Humphreys JC, Lee KA. Why some women have an optimistic or a pessimistic bias about their breast cancer risk. Cancer Nursing, 2010; 33: 64–73. 44 Revenson TA, Pranikoff JR. A contextual approach to treatment decision making among breast cancer survivors. Health Psychology, 2005; 24 (4 Suppl): S93–S98. 45 McConigley R, Holloway K, Smith J et al. The diagnosis and treatment decisions of cancer patients in rural Western Australia. Cancer Nursing, 2011; 34: E1–E9. 46 Mendick N, Young B, Holcombe C, Salmon P. The ethics of responsibility and ownership in decision-making about treatment for breast cancer: Triangulation of consultation with patient and surgeon perspectives. Social Science & Medicine, 2010; 70: 1904–1911. 47 O’Brien MA, Ellis PM, Whelan TJ et al. Physician-related facilitators and barriers to patient involvement in treatment decision making in early stage breast cancer: perspectives of physicians and patients. Health Expectations, 2013; 16: 373–384.
ª 2014 John Wiley & Sons Ltd Health Expectations
Rural women’s views of breast cancer treatment, E Ristevski et al. 48 Lansdown M, Martin L, Fallowfield L. Patient-physician interactions during early breast-cancer treatment: results from an international online survey. Current Medical Research and Opinion, 2008; 24: 1891–1904. 49 Ristevski E, Regan M, Birks D, Steers N, Byrne A, McGrail MR. Communicating about breast cancer: Rural women’s experience of interacting with their
ª 2014 John Wiley & Sons Ltd Health Expectations
surgeon. Australian Journal of Rural Health, 2012; 20: 22–28. 50 Jones J, Humphreys J, Wilson B. Do health and medical workforce shortages explain the lower rate of rural consumers’ complaints to Victoria’s Health Services Commissioner? Australian Journal of Rural Health, 2005; 13: 353–358.
13
