Surgical breast cancer patient pathway: Experiences of patients and relatives and their unmet needs

Abstract Background and aim Breast cancer is the most common cancer disease in women worldwide. In Denmark, the law prescribes cancer patient pathways (CPPs) in general and thus also for breast cancer. Although results from patient satisfaction surveys show overall satisfaction with the pathway, a call for improvement has been voiced for some areas. The aim of this study was to explore patients’ and relatives’ experiences with the surgical breast CPP and to identify any unmet needs. Method This study was based on focus groups with patients who had surgery for breast cancer, and their relatives. The settings were two Danish surgical breast cancer clinics. Findings Overall, patients and relatives found the structure of the surgical breast CPP satisfactory. The time in the surgical department was short, and most patients found it difficult to cope with the situation. Empathy and a supportive relationship between patients, relatives and health‐care professionals were of great importance. Five key points were identified in which some of the participants had unmet needs. Suggestions for change were related to information, communication, choice of treatment, flexibility in the pathway and easy access to the clinic after surgery. Conclusion Although patients and relatives found the CPP for breast cancer satisfactory and well planned, suggestions for change were made relating to unmet needs with respect to five key points in the pathway. Implementing findings from this study in clinical practice requires co‐operation between health‐care professionals and support from the leaders of the organization.


| BACKG ROU N D
Breast cancer is the most common cancer disease in women in Western countries, and the diagnostic period is stressful for most breast cancer patients due to fear of possible implications of the treatment and fear of dying. [1][2][3][4] A systematic review on psychosocial and practical support needs has suggested that cancer patients, including patients with breast cancer, experience unmet needs related to physical and psychosocial aspects at the time of diagnosis. 5 The time between diagnosis and surgery is of special concern, and it has been suggested that health-care professionals (HCPs) offer individual support and information during this period. 6 In Denmark, approximately one in every nine women gets breast cancer, and most of them are between 50 and 70 years old. 7 The survival rate has increased in recent decades 8 and is 97% after 1 year and 87% after 5 years. 9 The Danish health authorities stipulate cancer patient pathways (CPP)s for cancer treatment. 10 Patients may access the breast CPP via their general practitioner (GP) or via mammography screening. If a patient has surgery, she will receive the surgery results as a part of the CPP. 10 The majority of breast cancer patients undergo day surgery; about 70% have breast-conserving surgery and 30% have mastectomy. Furthermore, most patients are offered adjuvant therapy. 11,12 Day surgery for breast cancer appears to be safe and well tolerated with good satisfaction rates. 13,14 However, short duration of time generally affects the ability to absorb information 15 and there has been a call for better ways to offer emotional support, counselling and information about the disease and its management. 14 Results from the Danish National Patient Satisfaction Surveys 16,17 showed high overall satisfaction, but low satisfaction was related to patients' and relatives' experiences of being involved in treatment and healthcare decisions, the amount of information received and knowledge about who among the HCPs are responsible for their treatment course. However, there is little evidence that data on patient satisfaction lead to improvements in the quality of care. 18 Many factors are modifying the association between the received care and patient-reported satisfaction, for example, patient expectations, patient characteristics and loyalty to HCPs. 19 In addition, patients tend to answer more positively to general questions about their overall experience despite having reported critical events, and patients tend to be more critical if they have the possibility to explain their criticism (ibid). It makes it difficult for HCPs to act on behalf of the patient satisfaction surveys alone. Thus, deeper insight into patients with breast cancer and their relatives' experiences of the surgical CPP for breast cancer is needed.
The aim of this study was to explore patients' and relatives' experiences with the surgical breast CPP and to identify any unmet needs.

| ME THODS
The study draws on qualitative focus groups (FGs) 20 with patients treated for breast cancer and their relatives. It is the first part of an action research study aiming at involving patients with breast cancer and their relatives in the development of the surgical breast CPP.
The action research approach leans towards the pragmatic philosophy of John Dewey 21 focusing on people's active involvement in making sense of their world.

| Setting
Two surgical breast cancer clinics in Denmark were involved. Both clinics used the same surgical guidelines 11 and CPP. 10 During the recruitment period, 556 patients had surgery for breast cancer in the clinics. Figure 1 illustrates the surgical breast CPP. "Key points" identify events of special importance for patients with breast cancer derived from scientific literature 1,6,[22][23][24][25][26][27][28][29] and were confirmed by the HCPs. The key points were as follows: receiving the diagnosis; the day of surgery; plan for further treatment based on microscopy; after completing overall treatment.

| Participants and recruitment
Former patients who had surgery for breast cancer were identified through the Danish Breast Cancer Cooperative Group database. We invited patients with a temporal distance to the surgery, because we did not want to burden the patients during their adjuvant treatment.
We selected civil registration numbers starting from 01.01 and continued until we had included 100 patients from each clinic. Three to five FGs with five to eight participants in each setting are recommended in the literature. 20 We excluded patients with more advanced breast cancer (Stage III and IV), bilateral breast cancer, patients treated with neo-adjuvant chemotherapy and male patients because they do not follow the standard surgical breast CPP ( Figure 1).
The patients received letters with an information sheet, a written consent form (Appendix S1) and prepaid, pre-addressed envelopes. The form allowed them to accept or reject participation and to indicate if they had a relative whom they wished participated, too. and with an interest in further developing the surgical breast CPP but not in direct contact with patients on a daily basis. Suggestions for change were emphasized, and it was pointed out that the aim was not to reach consensus. 20 Subsequently, each participant made a brief self-introduction.

| Data collection
The diagram for the surgical breast CPP (Figure 1) served as a framework for FG discussions and themes were prepared in advance, but participants were allowed to raise other themes. At the end of each FG, the facilitator briefly summarized the themes and invited further comments.

| Data analysis
The overall analytic strategy was meaning condensation 33 and systematic text condensation. 34 The facilitator conducted a prelimi- In the systematic analysis, the facilitator and co-authors first read the transcripts to get an overview; this process yielded preliminary themes. Secondly, we read the text to extract specific meaning units.
Coding of the meaning units during an iterative process resulted in conclusive themes (Table 1). Finally, the facilitator synthesized the transformed meaning units into a descriptive text for each FG. After having conducting all FGs, the facilitator summarized all themes and sent the condensation of the themes to patients and their relatives, allowing them to confirm the contents and provide feedback. 33,34 The patients confirmed the content with two comments, which did not add anything new to the analysis.

| FINDING S
A total of 126 patients responded to the invitation and 43 patients and 17 relatives agreed to participate; however, due to illness, only 40 patients and 16 relatives participated in nine FGs ( Figure 2). Table 2 shows the participating patients' profile and Table 3 the distribution in FGs. The time since diagnosis ranged from 8 to 18 months.

| The surgical breast CPP: a journey with several key points
Although the focus was on key points in the surgical breast CPP, patients and relatives experienced the breast CPP as a "journey" of experiences from the encounter with the health-care system to daily life as a cancer patient and a survivor. They did not distinguish between different departments in the journey, but the facilitator recognized the different settings by asking to the context of the experience.
All participants considered the surgical breast CPP fast, predictable and well planned. They used metaphors like "a train on its tracks" and "following a thread" to describe it. All patients had undergone surgery, and the majority had received adjuvant therapy.
The diagnosis was considered scaring and severe. However, the time in the surgical department was short, and most patients called this "the easy part." Patients who received chemotherapy experienced the pathway in the oncological ward as challenging and exhausting.
All patients recognized the key points in Figure 1 as crucial.
However, several patients in our study mentioned the GP consultation, the investigation in the radiology clinic and the follow-up after surgery as key points too. They described the key points as situations where the outcome was critical for their daily life and future. In the key points, they considered a supportive relationship, empathy and good communication between the patient and the HCP as crucial. change concerning unmet needs. In the following section, the key point will be described further. In the quotes below, we named doctors as male and nurses as female to maintain anonymity.

| Referral in general practice
When a woman became suspicious of a lump in her breast, she would contact her GP. In the consultation, it was very important that she felt that she had the right examination and that the GP took her worries seriously. A few patients did not feel that their GP was competent performing the right examination and felt that he hesitated or refused to refer her to the breast clinic.

| Investigation in the radiology clinic
Some patients unexpectedly received a preliminary warning of the diagnosis by the radiologist. Arriving alone at the radiology clinic because they thought the purpose of the visit was to have a biopsy taken and that they would get the results at a later visit, they suggested that the radiology clinic recommends the patient to bring a relative.
Furthermore, they needed more explanations and a caring nurse to follow up and suggested that it should be possible to see the outpatient breast clinic immediately after their visit to the radiology clinic.

| Receiving the diagnosis and treatment plan
Receiving the diagnosis from the surgeon was an important and sensitive situation for most patients and relatives. Some patients were  A few patients wanted to discuss the treatment but felt that the doctor was too busy and made the choice without asking for the patient's opinion. Some patients needed time to be accustomed to their new situation to gain knowledge and to be prepared for the choice.
Although some patients experienced that it was possible to discuss the treatment, they did not have the energy or knowledge to engage in a discussion. They felt like being in a "foreign country" without a map, language skills or information about safe passages.
They needed time, information and support to make the decision.
We feel like being in a foreign country … we don't know the language… we don't know how the trip will be… and we don't know what to expect. We need information and support to make decisions… and time to think it all through. (Patient A44)

| The surgery
All patients and relatives referred to the day of surgery as an impor- Other relatives found it difficult to ask questions on the patient's behalf and suggested that the surgeon should not inform about the surgery until the patient was fully awake.

| D ISCUSS I ON
Overall, patients and relatives found the structure of the surgical breast CPP satisfactory. However, they emphasized the importance of HCPs showing empathy and being good communicators.
Five key points where patients had unmet needs and suggestions for changes were identified (Figure 3). Key points from patients' and relatives' perspectives were slightly different from those iden-

| Comparison with existing literature
To our knowledge, the patients' reaction to entering the CPP has not been investigated elsewhere. Urgent referral of cancer patients is associated with better survival. 35 Thus, the GP's role is pivotal and approximately 74% of all cancer patients in Denmark are referred for further investigation by GPs. 36 However, the number is most likely lower for breast cancer due to the breast cancer screening programme. Most patients did not see the GP during their treatment; however, those who did noted that the GPs focused on psychosocial issues rather than their treatment. A Canadian study identified challenges inhibiting the GP's involvement in the cancer pathway, including the GP's lack of up-to-date knowledge about cancer treatment and the experience that patients "disappear" in the cancer system. 37 In a German study, patients described the GP as an important person in the cancer trajectory, and the majority (71%) visited their GP during cancer treatment. Knowing the patient's anamnesis, comorbidities and mental as well as social circumstances was a considerable strength. 38 Involving the GP more in the CPP in Denmark might be beneficial in terms of psychosocial support, and this issue needs further exploration.
In the present study, many patients received a warning in the radiology clinic that they might have breast cancer, and some experienced lack of empathy, support and communication skills on the radiologist's part. Breaking bad news is a common task in the radiology clinic. 39 However, an American study showed that 84% of the radiologists had received no training in communicating radiological results to patients, even though 92% reported doing so. 40 In contrast to the patients in our study, cancer patients in the UK described the content of the information given to them as more important than facilitative or supportive aspects. 41 Communicating results in a suboptimal way might have serious implications for later experiences in the course of illness and treatment, 42 as seen in our study where patients with negative experiences were emotionally marked in a negative way during and after treatment.
All patients in our study received the diagnosis in the breast cancer clinic and experienced the diagnosis as a stressful moment. In another Danish study, more than two-thirds of patients with breast cancer experienced moderate or severe distress at the time they got their diagnosis. 2,3 Predictors of severe stress were young age, children living at home, use of antidepressant or sedative medicine, and prior depressed emotional status. Our patients described different coping strategies. Some wanted to know "the whole story" to regain control, while others wanted information provided stepwise.
A Norwegian study of coping strategies related to breast cancer describes that a "step-by-step" strategy is the preferred coping style

| Strengths and limitations
Because of the narrow scope of the investigation for the present study and the specific characteristics of the participants, we assume satisfactory information power 47 and data saturation 20 in FGs with patients and relatives and with patients alone. However, in the FG with only male patients, we did not get high information power or data saturation. We obtained a picture of the challenges that a male relative encounters as a spouse to a woman with breast cancer. The FGs had different number of participants. FGs with only two-four participants limit the range of experiences, but might be more comfortable for participants than groups of 8-10 20 .
A number of choices in the present study were related to the fact that it was the first part of an action research study aiming at involving patients with breast cancer and their relatives in the development of the surgical breast CPP. An example is that although we might have reached saturation before conducting nine FGs, we did not want to deny any invited person the possibility to participate in this patient involvement project. Another choice related to action research was inviting patients and relatives to provide feedback on the themes.
The patient characteristics were in line with those of the average population with a diagnosis of breast cancer in terms of age and method of surgery. We have no information about educational level, social income, health literacy or marital status of either participants or non-participants. However, we excluded patients with advanced disease. Some of the non-participants responded that they lacked energy, suggesting that the participants were healthier than those who did not participate.
The period between the FG and the patients' and relatives' ex-

ACK N OWLED G EM ENTS
We want to thank the patients who underwent surgical treatment for breast cancer in two surgical breast cancer clinics and their relatives for participating in focus groups and for comments along the road. Without their participation, the project would not have been possible.
We are grateful to the managers in the surgical departments for housing and meals during the focus groups, and for financial support to the project from the department in the University Hospital.

CO N FLI C T O F I NTE R E S T
None declared.

E TH I C S
The Danish Data Protection Agency (record number 2007-58-0010) approved the overall study and accepted that information from patient files was passed on to the researcher from the Danish Breast Cancer Cooperative Group database. 23