Strengths and limitations
The first strength of our study is that patients’ data were collected in a day hospital treating all types of cancer, which, moreover, is the regional comprehensive center that recruits patients from the whole Midi-Pyrénées region in France. The day hospital treats a large number of patients (1249 chemotherapy sessions a month, or about 60 sessions a day) who have various types of cancer and are followed by different oncologists. The size of the center allowed us through this project to study a large population of patients, with different oncology and GP practices.
The importance given to the patient’s point of view allowed us to focus on patients’ feelings, needs and perceptions.
A large proportion of patients were women (
n = 343, 85.1%) as there is a large proportion of women treated for breast cancer (61.4% referred by breast specialists and 9.8% by gynaecologists) in the day unit. Worldwide, breast cancer is the cancer with the highest incidence in women, with 1.7 million new cases in 2012 (or 25% of cancers in women) and 0.5 million deaths [
2]. In addition, most treatment lines for breast cancer are administered in the day hospital, with a long survival that extends the duration of care. All in all, this leads to an over-representation of breast cancer and women in our study. So, these data are generalizable to patients suffering from breast cancer and may be reflective of the experience of patients with other cancers.
The main limitation of this study is that it analyses patient-reported data only with a high memory bias. In this paper, we wished to explore the relationships between different factors that might explain a patient’s reticence to consult their GP for their cancer care. Another shortcoming is that the study does not highlight the efforts made by the main medical practitioners (oncologist and GP) but rather focuses on the effect of the medical efforts on patients’ attitudes towards their GP, and the perception of the communication by the patient, which influences the patients’ confidence towards his/her various interlocutors. Another limitation of our study is a mono-centric design, which has a center effect and a selection bias. We chose a quantitative instead of a qualitative method to measure the lack of communication between oncologist and GP, and compared our results with the literature.
We wished to look for association between different factors that could explain patients’ reticence to consult their GP for their cancer care. We sought to have a large sample of patients with cancers in our study in order to be as representative as possible of our study population despite our mono-centric study. In addition, closed-ended questions allowed us to assess the presence of associations between patients’ responses. These elements justify our choice of a quantitative rather than a qualitative method.
Comparison with existing literature
Shared decision-making needs to take place with the patient (patient-centered), because it is an important step in the patient’s life that impacts their perception of the disease [
25]. The patient’s frequency of consultation with the GP prior to diagnosis can impact the stage of cancer diagnosis and therefore early diagnosis of cancer [
26], especially since there is a strong association between GP-estimated cancer risk at referral and probability of cancer [
27]. The GP, using a holistic approach, should be an attentive partner to share adequate decision-making in complex cancer treatments with the patient, in collaboration with other specialists [
28]. Several qualitative studies have been published on patients’ perceptions of their cancer management [
29], their relationship with the healthcare team [
30] and their interest in medical education [
31,
32]. Other studies have examined the perceptions of healthcare teams on their patients’ treatment [
33‐
35]. These studies revealed a number of factors leading to communication difficulties between the patient, the oncologist and the GP. These difficulties can include a lack of direct communication between oncologists or GPs, the lack of two-way communication tools between professionals, the need to set up a patient centred management system and to allow a prolonged follow-up of patients by the GP. Furthermore the quality of the relationship between physician and patient could be a survival factor [
36]. In our study, we found that increasing communication between different practitioners, in a way that is perceptible to the patient, reduces the use of emergency departments and increases the use of GPs in primary care. This makes it clear that by improving communication and coordination between GPs and oncologists, we have a direct impact on quality of life (less hospitalization, patient-friendly management) and on the patient’s survival [
30‐
36].
Participation of the GP in diagnosis of cancer was estimated at 52.8% by patients. Three-quarters of patients had been followed by the same GP for more than 5 years, and half had been diagnosed within the previous year. There is a strong perception by the patient of the involvement of the GP in the diagnosis, as the GP follows the patient over the long term. The literature indicates that the investigations necessary for diagnosis are mainly prescribed by the GP [
37]. The patient is then referred to the oncologist by the GP (passing from primary to hospital care) and once the pathology results are available the oncologist discloses the diagnosis of cancer. In France, the National Cancer Plan provides for a diagnosis disclosure procedure which consists of four consecutive phases: a medical phase (discussion between oncologist and patient), a phase of consultation on nursing and care provision needs, and a phase dealing with access to supportive care, while the last phase deals with communication with the GP [
9]. During this last phase, the GP is informed about the diagnosis, the cancer treatment program, its side effects and the planned hospital consultations. In practice, this stage is often neglected; the literature finds that the GP is delegated to disclose the diagnosis to the patient in 19% of cases and that it is the patient who discloses their own diagnosis to the GP in 18% of cases [
9]. Involving the GP in all the stages leading up to treatment optimizes follow-up and care coordination [
38,
39]. Furthermore, the implication of the general practitioner in the health care decreases the number of visits to the emergency department [
39,
40]. Our findings suggest that oncologists should inform the patient about the role of their GP. It thus seems indispensable for oncology departments to develop guidelines [
41] to optimize patient-centered management, adapted to outpatient medicine. If the oncology department proposed that the patient should have a consultation with their GP following the diagnosis disclosure consultation, the GP would regain their role. The patient would then be in formal contact with their GP for management of their cancer, and a link would be created between the hospital and primary care. Jiwa et al. showed that this professional network between GP and other specialists impacts early diagnosis [
42].
Our work underlines the need for communication between all those involved [
20,
43], as well as the fact that this communication must be visible and made explicit to the patient. It probably increases confidence because we showed that when the patient believes that there is good communication between the GP and the oncologist, the number of patients consulting specifically for a cancer-related problem increases, whether in an emergency or not. The literature shows that GPs believe that there is room for improvement in their communication with oncologists [
23,
44]. Although deeply involved in the management of patients with cancer, GPs feel isolated at crucial moments of the illness, and when making decisions at these times [
33]. Many studies [
12,
13,
17,
20,
44] reported unsatisfactory communication between GPs and oncologists. According to these authors, gaps exist in the transmission of information on patients to GPs. GPs felt that their specialist colleagues regarded them almost with contempt and, finally, that the specialists ‘captured’ certain of their patients. A qualitative study showed that GPs are more involved in the management of their patients with cancers because they have better access to communication with oncologists [
45]. Another study [
46] confirmed their desire to be involved in patient management and their regret regarding the poor communication with their oncologist colleagues [
47]. Finally, patients themselves call for better cooperation between the physicians involved in their care [
48]. Good communication between the different physicians is indispensable for good holistic patient care, particularly in complex situations [
23,
24] or at the end of life [
11]. Coordinating care for the patient suffering from cancer is affected by the relationship between the GP and the patient [
23,
49].
Implications
Systematically integrating a GP consultation in the cancer course of a patient could improve management and care coordination. Ideally, this involvement should be from the beginning, or after the announcement. This concept must be tested and evaluated in real practice, as a prospective study.
It could also be interesting to conduct co-training with oncologists and GPs. This would make it possible to develop a common care pathway between practitioners, for which communication would be planned and organised, allowing better coordination of care. Practitioners could use a common basis of advice and recommendation for supportive care and follow-up. The tools thus created could be used on electronic support for patient-centered coordination.