French women's representations and experiences of the post‐treatment management of breast cancer and their perception of the general practitioner's role in follow‐up care: A qualitative study

Abstract Background In France, the Cancer Plan II 2009‐2013 was launched to improve post‐cancer management and promote greater involvement of general practitioners (GPs) in follow‐up care. Objectives We investigated how women experienced the post‐treatment management of breast cancer and perceived the role of the GP in follow‐up care. Design We conducted a qualitative study based on semi‐structured interviews with women with breast cancer in remission. The interviews were transcribed and analysed in accordance with the principles of thematic analysis. Setting and participants We interviewed 21 patients aged between 30 and 86. Eighteen breast cancer survivors were recruited from GP practices and five from a patients’ association. Results Four themes emerged from the thematic analysis: that breast cancer is a life‐changing event; how patients managed the effects of treatment; how patients viewed the future; and patients’ expectations of their GP. Discussion and conclusion French survivors of breast cancer perceived the physical changes caused by their illness to impact their womanhood, leading to difficulties with sexual relations, a diminished sense of self and fears for the future. They felt abandoned at the end of treatment and desired support. They appreciated the ease of contacting their GP but considered follow‐up care outside their remit. They agreed to be followed up by their GP, provided that they co‐operated closely with a cancer specialist. This is in accordance with the French Cancer Plan II 2009‐2013, which recommends greater involvement of GPs in a monitoring protocol shared with cancer specialists.


| INTRODUCTION
Because of its high incidence and relatively high survival rate, breast cancer is the most prevalent cancer in the general population. [1][2][3] In France, all women with breast cancer are entitled to initial therapeutic management tailored to their individual case and to the effects of their treatment. They receive care in a hospital setting in accordance with standard therapeutic regimens. The last session of chemo-or radiotherapy marks the beginning of "life after breast cancer." 4 Screening for relapse is an essential part of follow-up, but it is not the only wish of survivors, who would welcome greater overall coordination. 5 Many studies have examined the psychosocial impact and late effects of breast cancer on women. 6 Women treated for breast cancer describe their life as radically altered and feel that they must create a new life after cancer. 7 They report that it is difficult to settle back into family life and reconcile their new life with work and social commitments. When their treatment ends, their subsequent management is not individualized and they regret receiving no psychosocial support. 8 In France, studies have investigated the quality of life of breast cancer survivors, 9 but few have focused on their experiences, needs and the challenges they face upon the completion of hospital treatment.
Because women have easy access to their general practitioner (GP), the most recent international recommendations 10,11 suggest that family doctors should participate in the post-hospital follow-up of patients who have finished treatment. In setting up the Cancer Plan II 2009-2013, the French government aimed to individualize the management of patients and increase the involvement of GPs, both during and after treatment. 12 The Institut National du Cancer (French National Cancer Institute) and Haute Autorité de Santé (National Authority for Health), while recognizing the value of GPs' contributions to cancer management, called for the development of new strategies to improve their role in post-cancer treatment. 13 Primary care physicians play an increasing role in monitoring the evolution and the late and long-term effects of the disease, while the involvement of oncologists in follow-up decreases. 14,15 Several studies have shown that women think that GPs lack experience with cancer and have insufficient time, but patients are not opposed to the involvement of GPs in follow-up care under the condition of good coordination with an oncologist. [15][16][17] Given the implementation of the Cancer Plan II 2009-2013, it seemed relevant to collect the views of French survivors of breast cancer on their post-treatment follow-up. Therefore, in this study, we examined how French women experienced the post-treatment management of breast cancer and perceived the role of the GP in follow-up care.

| Study design
We used a qualitative method modelled on an exploratory approach appropriate for recording perceptions. This exploratory approach was based on individual semi-structured interviews that examined the perceptions and experiences related to private and painful life events of breast cancer survivors. 18 We adhered to the Consolidated Criteria for Reporting Qualitative Studies guidelines. 19 To collect a greater diversity of experiences, women were recruited from the practice populations of GPs in the Auvergne region of central France and from the patients' association of a regional cancer centre. The GPs of this population were identified because they met variability criteria in terms of sex, environment (urban, semi-rural or rural) and type of practice (group or individual). Of 16 GPs selected from the telephone directory, nine agreed to participate. The president of the patients' association and the GPs were trained in how to recruit patients for the study by JV. To be eligible, patients had to be over 18 years of age and experiencing their first episode of breast cancer, the treatment for which (surgery, radio-or chemotherapy but not hormone therapy) had to have terminated more than 1 month and fewer than 5 years earlier. Patients were excluded if they had a relapsing form of breast cancer, cognitive disorders diagnosed by the GP or severe deterioration of their general state of health (eg because of another form of cancer, chronic heart failure or respiratory failure).
The patients were chosen to obtain a purposive sample according to descriptive (age, residence, occupation, family situation before and after cancer, number of children) and strategic (type of treatment, time since the end of institutional treatment, membership of a patients' association) variables. The number of interviews was determined by the principle of data saturation, which in this study was defined by a lack of new themes raised during three consecutive interviews.
The president of the patients' association and the GPs invited eligible women to participate in the study and obtained their consent. If a patient declined to participate, the reason was recorded. Interviews were conducted by the same researcher (JV) through face-to-face, semi-structured conversations. All interviews took place in the patients' homes. The interviewer introduced herself as a medical student conducting a research project on the post-treatment management of breast cancer. The interview guide (Table 1)  The interviews were recorded, transcribed verbatim and rendered anonymous. Observations regarding the patients' behaviour and feelings and their interactions with the interviewer were also recorded. 25

| Data analysis
The interviews were analysed using a thematic approach according to the grounded theory for explanatory purposes. 26 The interview material was read several times after each transcription. A continuous thematization was performed, which consisted of a list of the topics identified in the course of reading. Low-level inference was sought to stay as close as possible to the discourse of the interviewee, and interpretation was avoided where feasible. The themes were gradually regrouped and prioritized. Thematic axes emerged from the thematic groupings, and, finally, the major classificatory headings were identified. The analysis was performed independently by two different researchers (JV and PV). Each researcher used the same method to analyse the data. In case of disagreement, the data were discussed with a third researcher (CL). The classification was later analysed independently by a medical anthropologist (CL). Quotes were selected to illustrate the categories and were translated into English by one of the authors (JV). To ensure that the sense of the content was unchanged by translation, the quotes were translated back into French by a native English-speaking person. The analysis was then submitted to the patients by mail for validation.

| Ethics statement
A letter that informed patients about the aims of the study and how it would be conducted and guaranteeing confidentiality, anonymity and the observance of professional secrecy was given to the patients by the GPs or the president of the patients' association. This letter also explained the way in which consent would be obtained.

| RESULTS
Of the nine GPs who agreed to participate, two did not submit patients because of time constraints (see Table 2). This did not, however, affect the diversity of the sample. Twenty-three patients were selected and contacted. Two declined to participate because they did not wish to be interviewed at home. Therefore, the analysis involved 21 patients, of whom 16 were recruited from GP practices and five from the patients' association (see Table 3). Eight were from urban areas, seven from semi-rural areas and six from rural areas. Thirteen

| A life-changing event
Cancer had permanently altered the lives of all the women interviewed. The patients believed that cancer was a taboo subject, a source of fear in the collective imagination and a possible cause of alienation. Some felt a diminished sense of self because of their disease. Although the women's narratives showed that irreversible changes had occurred in social, professional and personal aspects of their lives, some claimed that cancer had not changed anything. For example, Patient N4, who was aged 51 and who had been a hairdresser before her illness, said that the disease had not changed anything in her life, even when she was she was registered disabled after treatment.

Cancer…it makes you a total misfit…
The women rarely mentioned concerns about their body appearance but, when they raised the problem, the GP's advice was appreciated. GPs seemed the best people to confide in about these issues, and the patients wished that they would spontaneously broach these intimate problems.
In contrast to these negative reports, many women said that they had adopted a different approach to life and attained an en-

| Their view of the future
At the end of their institutional treatment, many women felt abandoned, as if in a vacuum. Consultations at the cancer centre stopped without an official handover to the GP or another outside doctor.   The women considered themselves lucky in comparison with patients whose cancer had undergone an unfavourable evolution.
They felt generally optimistic and hopeful. Several patients said that they had received great help from their circle of family and friends, both in the workplace and in community groups. This was particularly true for members of the patients' association, who benefitted from sharing their experiences with individuals other than doctors.

| What they perceived from their primary care physician
Most of the patients believed that the GP had a key role in centralizing the different elements of their medical file. For most patients, it was during their illness that the notion of a family doctor took on its full meaning. They appreciated their close relationship with their GP, who knew and cared for the whole family and was therefore able to give support to all its members. The feeling of trust was all the greater because their relationship was long-standing. If the children wanted to call the doctor to ask a question, well they could.

(P 18, 51 years, cs)
Post-treatment follow-up care was coordinated in most cases by the cancer centre. Certain patients regretted that they were not more closely overseen and were incapable of naming the doctor incharge of their care. In general, the women had greater confidence in the cancer specialist but would sometimes visit their GP. Most survivors thought that the GP should be responsible for centralizing the many elements of their medical records. They agreed to be followed up by their GP, provided that there was close co-operation with an oncologist. They believed that this co-operation should allow the GP to book an appointment with a specialist more quickly in case of problems. Women who lived far from the cancer centre wanted their GP to have a greater role in their post-treatment follow-up, to avoid long trips.

(P 3, 49 years, cs)
The women also called on the GP to renew prescriptions made out by the cancer centre (for physiotherapy or medication) or to obtain administrative documents (sick leave certificates, applications for spa treatments, disability allowance forms).

| Principal findings
This is the first French study to analyse the experiences and per-

| Results in the context of other studies
Breast cancer has an intimidating reputation as a disease because of the symbolic importance of the breast and the mutilating effects of treatment. The breast represents many things: gentleness, motherhood, sexuality, sensuality and safety. 23,24 In a review of the literature,  28,29 Breast cancer has become a curable disease that, like other chronic illnesses, requires the organization of long-term care. Follow-up is focused on screening for recurrence, which is of concern to survivors and physicians alike. 28 Currently, specialized centres have to cope with the follow-up care of everincreasing numbers of patients.
In our study, as in that of Wright et al., 30 34 These initiatives may foster greater patient trust; however, in a recent controlled trial of an attempt to increase the involvement of GPs in cancer rehabilitation, this aim was not achieved. 35 Further studies must determine how GPs can be involved in the management of cancer treatment and post-treatment care.

| Limitations and strengths
Careful selection of a varied panel of women increased the external validity of the study and allowed collection of a broad data spectrum and data saturation. The sample of survivors was diverse in terms of age, treatment type, geographical location, family situation and socio-economic status. However, it was not a representative sample, because the study was conducted in a predominantly rural region of France. Some GPs may have unconsciously selected patients with whom they had a good relationship. To influence the women's replies as little as possible, especially with regard to questions concerning the attending physician, the research interviewer was a medical student.
That the researcher was a woman, that she had no connection to the attending physician, that there were no observers and that the surroundings in which the interview took place were familiar all helped to establish the patients' confidence.
The interviews were fully transcribed by the person who conducted them in the interests of objectivity and reproducibility and to avoid subjective interpretation of the data. We did not use triangulation for data collection. A focus group approach did not seem appropriate for the analysis of patients' mental distress and private lives.
The triangulation used for the analysis and the validation of the data by the participants enhanced the internal validity of the study. The participation of three researchers limited personal interpretation. A matrix analysis could have been used to identify characteristics of the patients that may have influenced their perceptions.

| Perspectives
The findings of this study show that breast cancer survivors expect better collaboration between cancer specialists and GPs during