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Experience of patients with metastatic breast cancer in France: results of the 2021 RÉALITÉS survey and comparison with 2015 results

Experience of patients with metastatic breast cancer in France: results of the 2021 RÉALITÉS... IntroductionIn 2020, 2.26 million women were diagnosed with breast cancer, making it the most diagnosed cancer among women worldwide [1]. Through recent improvements in management, 70–80% of patients diagnosed at an early stage have an increased chance of recovery [2]. Unfortunately, in 20–30% of cases, cancer progresses to a metastatic stage [3]. Metastatic breast cancer (MBC) is a chronic disease that requires long-term treatment to slow its progression. Although supportive care is a major asset in reducing the side effects (physical and psychological) of MBC and its treatments [4], the latter can considerably impact patient quality of life and can represent a barrier to the implementation of patients’ personal and/or professional plans [5]. The incurable nature of MBC–combined with the unpredictable course of disease–increases patient vulnerability and strengthens their sense of inability to limit disease progression and improve their daily life [5, 6]. Patients’ knowledge of the disease and of care provision, as well as identification of the physical and psychological impact of MBC by healthcare professionals, are essential elements to help patients live better with their disease and facilitate implementation of a personalised care strategy [4, 7]. Unfortunately, there is little research on patient experience and solutions to improve quality of life [8, 9].In this context, the RÉALITÉS study was set up in 2015 to identify different stages in the patient MBC treatment plan and analyse their experience with the disease, its treatments and their impact on daily lives [10]. The results of this first survey of 230 women with MBC showed an overall patient satisfaction with their care, but a significant negative impact of the disease on daily life and a need for additional information to patients [10]. Of the patients surveyed, only 65% were aware of the metastatic component of their cancer [10]. When the diagnosis of metastatic disease was shared, 60% of patients reported feeling supported and listened to, although half of them (49%) did not fully understand the information provided by the physician [10]. Generally, responding patients–and particularly those receiving chemotherapy–reported numerous adverse events (AEs) [10].In recent years, the development of many therapies has improved patient prognosis and offered new perspectives [11]. CDK4/6 inhibitors are now recommended in combination with hormone therapy in patients with hormone-dependent MBC and HER2- (negative to the human epidermal growth factor receptor 2) at the metastatic stage [11], [12], [13], [14]. For patients with HER2+ MBC, first-line chemotherapy with trastuzumab and pertuzumab significantly improved survival. Other second-line HER2 inhibitors are available and have also had a considerable impact on patient outcomes [15]. In triple-negative MBC, first-line immunotherapy for PD-L1 positive tumours and PARP inhibitors for BRCA germ mutation, together with second-line sacituzumab-govitecan treatment, changed the management when only chemotherapy could be previously prescribed [16].The RÉALITÉS 2 survey was set up with two objectives: highlight any evolution relating to patients’ understanding of their disease and to highlight satisfaction with the global management of their cancer since the first RÉALITÉS study in 2015; via a mirror survey with the patient’s oncologist to better assess knowledge of their disease and treatments implemented. This article analyses “patient” data collected in 2020–2021 and compares them with those of 2015 when possible. Mirror physician/patient data collected via this survey will be published at a later date.MethodsRÉALITÉS 2 was a national survey conducted from 21 September 2020 to 8 February 2021 among French oncologists and patients. Patients were recruited through their oncologists who had previously agreed to participate in the survey. To be included in the survey, oncologists had to be actively treating at least 10 patients with MBC. Five hundred and three doctors treating patients with breast cancer were contacted by telephone or email. Seventy of them met the inclusion criteria and were informed about the objectives of this survey and how to participate in it, and 57 physicians agreed to take part and to include up to six volunteer patients each. Patients were sought for the survey based on a diagnosis of MBC, with no other specific selection criteria. Each patient included in the survey was asked by their physician to complete a paper-based self-administered questionnaire that took around 30 min to complete (Supplementry Figure 1). Developed by a multidisciplinary scientific committee, it consisted of 36 questions covering sociodemographic data (age, place of residence, profession), disease monitoring (healthcare professionals consulted, type of healthcare facility), knowledge of the disease (metastatic component, tumour status), diagnosis of the metastatic disease, treatments and their impact, particularly in terms of adverse events (AEs), supportive care, global perception of disease, information sought by patients and suggestions for improving disease management. A descriptive statistical analysis of these data was conducted. Quantitative variables were expressed as means and standard deviations (SD), medians and intervals, and qualitative variables were expressed as numbers of individuals and percentages. To assess the impact of certain criteria on responses, such as the type of centre where surveyed patients were treated, sub-populations were compared using the Student’s t-test for averages and the Chi-square test for percentages on the 2020–2021 data. The significance threshold was defined for a p value <0.05.ResultsProfile of responding patientsTwo hundred and sixty-six patients and 57 physicians responded to the RÉALITÉS 2 survey conducted in 2020–2021 while 230 and 48 respectively had participated in the 2015 RÉALITÉS 1 survey. The characteristics of participating patients are described in Table 1. Patients in the RÉALITÉS 2 survey were on average 62.3 years old (vs. 59.2 years in 2015, p<0.01). More than half were retired (56 vs. 48% in 2015, p<0.1), one-third were on sick leave/occupational disability (31 vs. 34% in 2015, NS) and 12% (vs. 15% in 2015, NS) were employed. Compared to 2015, more of these patients had children (85 vs. 75%, p<0.01) or belonged to a patient association (8 vs. 0%, p<0.01).Table 1:Profile of patients participating in the survey.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)Average age, years62.359.2p<0.01Family status, %With a partner5453NSAlone2427NSWith family2217NSAt home00NSIn a retirement home01NSNR02NSWith children, %8575p<0.01Employment status, %Retired/not active5648p<0.1On sick leave/disability3034NSEmployed1215NSNR23NSDistance from hospital to home, %<30 min travel time4847NS>30 min and <1 h travel time3434NSAbout 1 h travel time1013NS>1 h and <2 h travel time55NS>2 h travel time01NSNR30NSCurrent or former occupation, %Self-employed farmer or fisherman27NSCraftsman, merchant, business owner108NSManager, executive/freelance812NSIntermediate profession/teacher1412NSEmployee4536NSLabourer97NSNot working912NSNR36NSMember of a patient association, %80p<0.01Patients mentioning the metastatic stage, %7665p<0.01Patient-reported tumour status, %HR + HER2-1920NSHR + HER2+78NSHR-HER2-87NSHR-HER2+34NSDo not know, other, NR6361NSPhysician-reported centre of care, %University/regional hospital centre21NANAHospital centre39NANACancer centre21NANAPrivate clinic19NANAHER2, human epidermal growth factor receptor 2; NA, not applicable; NR, no response; NS, not significant; HR, hormone receptor.Patients interviewed in 2020–2021 showed better knowledge of the metastatic stage (76 vs. 65%, p<0.01) and identical knowledge of their tumour status (hormone dependent, HER2 overexpression, triple negative) vs. 2015 (37 vs. 39%, NS; Table 1).Current or past treatmentsCompared to the first survey, patients experienced more pre-treatment, including hormonal therapy, targeted therapy, radiation therapy sessions, or previous/current surgery (Table 2).Table 2:Current and past treatments of responding patients.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)Current and prior treatments, %Chemotherapy7267NSHormone therapy6041p<0.01Targeted therapy4324p<0.01Radiotherapy5319p<0.01Surgery458p<0.01Other/do not know71p<0.01Current treatment, %Injectable treatment5462p<0.05Multiple drugs per day4555p<0.05NS, not significant.At the time of the survey, 99% of respondents received at least one treatment for their MBC (vs. 97% in 2015, NS). Compared to 2015, significantly more patients felt well when on their treatment in 2020–2021 (73 vs. 60%, p<0.01), did not find it at all restrictive (21 vs. 11%, p<0.01) or did not want to stop it at all (38 vs. 24%, p<0.01). These global data masked sensitive differences depending on the nature of the treatment received; chemotherapy was associated with a significantly more negative perception (Figure 1).Figure 1:Perception of current treatment.The same applied to AEs, affecting 82% of responders on chemotherapy (vs. 77% in 2015, NS), 61% of those on hormone therapy (vs. 50% in 2015, NS) and 66% of those on targeted therapy (vs. 50% in 2015, NS).In all treatments combined, fatigue remained the most reported AE (82% of patients in 2015 and 2020–2021), particularly in patients coming from a university/regional hospital centre (94.7%, p<0.001), followed by nausea, hair loss, pain and skin dryness for 48, 46, 43 and 41% of 2020–2021 responders, respectively (Figure 2). As in 2015, patients reported a significant negative impact of these AEs on their daily lives (Figure 2).Figure 2:Adverse events (AE) experienced and impact on patient daily lives.Regarding information received on treatment, 74% of patients were able to ask their doctor their questions, 74% felt well supported and 81% said they were informed about AEs of treatments; percentages were significantly higher than in 2015 (Table 3).Table 3:Information received about current treatment.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)I feel well informed about this treatment83%79%NSThe doctor has informed me of any possible adverse event(s) experienced with this treatment81%71%p<0.05I was able to ask any questions I wanted about this treatment74%66%p<0.05Regarding this treatment, I felt well supported74%66%p<0.1NS, not significant.Metastatic disease announcement consultationGlobally, the time dedicated to the announcement of metastatic disease was considered sufficient by 83% of patients surveyed in 2020–2021; the percentage increased compared to 2015 (77%, p<0.1). Patient perception of this announcement also improved in 2020–2021 compared to 2015: a total of 78% felt their doctor had taken the time to listen to them (vs. 68% in 2015, p<0.05); 73% were able to ask their questions (vs. 58% in 2015, p<0.01), 74% felt well supported (vs. 63% in 2015, p<0.01) and 62% understood the information provided by the doctor (vs. 51% in 2015, p<0.05) (Table 4). However, results from 2020 to 2021 subgroup analyses showed disparities depending on the type of hospital: fewer cancer centre (Centre de Lutte Contre le Cancer–CLCC) patients felt listened to (67.3%, p<0.05) while more patients treated in private clinics felt able to ask their questions (84%, p<0.05).Table 4:Perception and understanding of the announcement of metastatic disease.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)Sufficient time was given to announce metastases83%77%p<0.1The doctor took the time to explain82%81%NSThe doctor took the time to listen to me78%68%p<0.05I was able to ask the questions I wanted73%58%p<0.01I felt well supported74%63%p<0.01The doctor gave me the information I wanted69%63%NSI have understood the information provided by the doctor62%51%p<0.05NS, not significant.As in 2015, half of patients surveyed reported having received a disease information leaflet (54 vs. 47% in 2015, NS) and one quarter received the contact details of a patient association (28 vs. 19% in 2015, NS) (Supplementary Table 1). In addition, more patients from hospital centres (62.5%, p<0.05) reported having received a disease information leaflet, and more patients from a private clinic (44%, p<0.001) received contact details of a patient association. Overall, fewer patients sought information from their healthcare professionals following the announcement of metastatic disease: 46% consulted their general practitioner (GP) in 2020–2021 (vs. 58% in 2015, p<0.01), 30% contacted their oncologist (vs. 53% in 2015, p=0.01) and 14% consulted a psychologist (vs. 27% in 2015, p<0.01; Supplementary Table 2).Supportive careExcept for the psychologist, who was consulted less in 2020–2021 than in 2015 (36 vs. 47%, p<0.05), and even less in CLCC (18.2%, p<0.001), patients consulted more frequently a social worker (36 vs. 26% in 2015, p<0.05), an aesthetic consultant (26 vs. 16% in 2015, p<0.01) and a physical activity facilitator (18 vs. 13% in 2015, p<0.1) (Figure 3). These results were even higher for patients in hospital centres and private clinics, who more frequently consulted a social worker (45.2%, p<0.05) and a physical activity facilitator (30%, p<0.05), respectively. These resources were deemed useful by 88% of patients (vs. 69% in 2015, p<0.05). The main reasons cited in 2020–2021 by the 46% of patients who did not receive supportive care were the absence of proposals by healthcare professionals (40% of cases), particularly in university/regional hospital centres (75% of cases, p<0.001), and the lack of desire to receive this type of care (41%), especially by patients from hospital centres (53.7%, p<0.05).Figure 3:Supportive care provided.Non-reimbursable expensesWhile fewer patients surveyed in 2020–2021 reported non-reimbursable expenses for their MBC (29 vs. 43% in 2015, p<0.01), the subpopulation analysis showed that patients who received supportive care reported significantly more non-reimbursable expenses than those who did not: 39 vs. 19% (p<0.01).Living with the diseaseCompared to 2015, several aspects of patient experience with their MBC changed positively: patients felt more informed (86 vs. 80% in 2015, p<0.1), spoke more to their friends and family (71 vs. 57% in 2015, p<0.01) and had less difficulty complying with their treatment (24 vs. 31% in 2015, p<0.1; Table 5). Other aspects, however, did not change since 2015 and showed a reduced quality of life in a large majority of patients with significant mental burden: such as thinking about the disease every day, anxiety during follow-up visits and obstacles to fulfilling their future plans (Table 5).Table 5:Living with the disease.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)I feel well informed about the disease86%80%p<0.1I am lucky to be well supported (family, friends); it helps me fight the disease84%80%NSIt’s a disease I think about every day72%71%NSI can easily talk about this disease with friends and family71%57%p<0.01I am always anxious before going to the hospital to see the doctor or do tests67%72%NSIt’s a disease that never leaves me alone64%67%NSThe disease prevents me from carrying out my plans and from thinking about the future64%69%NSI easily discuss this disease with other patients (in the hospital, for example)54%52%NSI find it difficult to meet my professional obligations as before26%42%NSI find it difficult to comply with my treatments properly; I often want to stop taking them24%31%p<0.1NS, not significant.DiscussionIn 2015, the RÉALITÉS 1 survey, the first large-scale study carried out in France on the experience of women with MBC, showed overall satisfaction of patients regarding their care and the support provided by the medical profession. In contrast, areas for improvement emerged regarding understanding information received, and the significant negative impact of the disease on daily life. In 2020–2021, the objective of the RÉALITÉS 2 survey was to measure any evolution in perception in patients with MBC regarding their disease and management.According to our study, management of MBC has changed positively in several aspects over the last five years. Patients who are better informed about their treatment are more likely to feel good when taking their treatment and not want to stop it. When it comes to announcing a metastatic disease, more people felt listened to and understood the information provided by their oncologist. Data collected from analyses of internet forums provide a less optimistic insight into this. An analysis of the French breast cancer platform “Les Impatientes” showed that patients frequently regretted having a lack of information and insufficient dialogue with healthcare professionals due to an incomplete understanding of their treatment plan [17]. Similarly, the 2013 pan-European patient survey in 216 responders showed that 51% of patients with locally advanced or MBC felt that their care would be improved if healthcare professionals listened more [18]. In a national sub-analysis of the large European study on social networks and MBC conducted between 2018 and 2020 in 14 European countries, Mazza et al. described that the needs most frequently expressed in the 8,410 French conversations analysed were unavailability of effective treatment, lack of effective screening and lack of empathy from certain healthcare professionals [19]. Conversely, a general review of the literature conducted in 2019 showed that most patients with MBC were satisfied with the emotional, psychosocial, informational and medical support received from relatives and healthcare professionals [20]. From a psychological point of view, the occurrence of MBC leads to an emotional charge that is at least equal to that of the initial diagnosis, with additional specific constraints: feeling that things could have been done differently to avoid a relapse, having to tell people about the disease again, uncertainty about the efficacy of treatments and fear of the spread of the disease in the body [21]. In addition, there may be a feeling of isolation, and a lack of understanding by society in general and the community of patients with localised breast cancer, in particular [21, 22]. Far from being contradictory, these perception differences illustrate the diversity of patient feelings towards the medical profession at this stage of the disease, ranging from recognition of the quality of information provided and the new treatment plan proposed, to the difficulty generated by the lack of a therapeutic solution that makes it possible to consider, as in the initial stage, a cure.In our 2020–2021 RÉALITÉS survey, evolution of supportive care was mixed. Consulting social workers, seeking aesthetic advice, and especially physical activity increased compared to 2015. However, almost half of patients still did not receive any complementary care, with 18% receiving no proposal of supportive care. In another survey conducted in Singapore in 411 patients with colorectal, breast or lung cancer, the satisfaction level relating to supportive care was low, despite being rated as important information [23]. In addition, the financial burden of non-reimbursed costs, which decreased in the overall sample, increased particularly in patients receiving this additional care. A prospective study carried out in France in 2018 on patients starting a new treatment for their MBC also showed an unequal use of supportive care: pain consultation = 43% of patients (24% in our 2020 survey); consultation with a psychologist = 37% (36% in our survey); physiotherapist = 30% (33% in our survey); social assistance = 22% (36% in our survey); aesthetic care = 18% (26% in our survey) and nutritional care = 18% (36% in our survey) [24]. In a recent literature review on supportive care in MBC, the authors pointed out that one key to optimal patient care is the management by an oncologist also trained in supportive care [25]. This is the notion of comprehensive care with the Anglo-Saxon concept of cure and care.In our survey, 36% of patients surveyed in 2020–2021 reported receiving advice about or a prescription for physical activity from their oncologist. This illustrates the increasing place of this complementary treatment in the therapeutic arsenal. Recent data demonstrating the effectiveness of physical activity in reducing fatigue, and in improving quality of life, psychological and emotional state of cancer patients and treatment compliance are numerous [26], [27], [28], [29], [30], [31], [32], [33]. The causes of under-use of supportive care, which is still too infrequent in MBC, are also better studied and include limitation of evidence on the feasibility and effectiveness of this advanced-stage care, and lack of knowledge of healthcare professionals and patients regarding the safety and benefits of such a practice [29, 32]. In terms of modalities, one-third of patients indicated a preference for group exercise under professional supervision, ideally with patients who also have metastatic cancer [34].Our survey shows that some aspects of the experience of MBC have not progressed favourably between 2015 and 2020–2021. Treatment AEs, particularly chemotherapy, are still strongly felt daily. It should be noted that the results of the oncologist-patient mirror survey (not presented here) show a lack of patient knowledge of their treatments, which may lead to bias in the declaration of tolerance. This lack of knowledge could be related to patients’ willingness to be informed. Indeed, a survey conducted in Italy in 2008 in 587 patients with breast, gastrointestinal or other forms of cancer showed that only 57% of cancer patients were keen to receive information regarding their treatment opportunities [35]. However, when looking at the European scale, the pan-European 2013 survey showed that 68% of patients with locally advanced or MBC wanted more information about future medical treatments and research [23]. At the metastatic stage, most women present treatment-related AEs, impaired quality of life, pain, fatigue or insomnia-related discomfort, sometimes associated with menopausal symptoms [19, 21]. Emotionally, episodes of depression and anxiety are common [21]. Often, these AEs are accepted with resignation, as a price to pay for the benefit of treatment and for which nothing can be done [36]. A French study showed that the diagnosis of cancer induces a significant reduction or even discontinuation of all activity in a majority of patients who were physically active before their diagnosis [30]. In a survey of 114 women with MBC for an average of 4.3 years and treated with chemotherapy (24%), hormone therapy (56%) or targeted therapy (14%), 86% of women reported at least one problem limiting their physical activity: difficulty running (58%), standing for an extended period of time (55%), exercising (33%) or performing domestic activities (32%) [34]. The main barriers reported were fatigue (54%), arthralgia or myalgia (42 and 29%), and dyspnoea (25%) [34].As in 2015, fatigue was the most frequently reported AE in our 2020–2021 RÉALITÉS survey (82% of patients), ahead of nausea (48%), alopecia (46%), pain (43%) and skin dryness (41%). In a 2016 meta-analysis involving more than 12,000 patients treated for breast cancer, reported rates of severe fatigue were between 7 and 52% with a median of 27% [37]. This rate seems to increase significantly in patients treated with chemotherapy. In a study of 67 patients treated for breast cancer between November 2017 and June 2019, clinically significant fatigue was reported in 46%, with two significant worsening factors: high number of treatments and presence of bone metastases [38]. This fatigue may persist beyond treatment, as shown by a recent Dutch study which compared 350 patients treated for breast cancer occurring at least five years prior with an equivalent sample in terms of age and consulting a GP, but without a history of cancer: after a median follow-up of 10 years, 27% of women still experienced persistent general physical and psychological fatigue, which is a significantly higher rate than women without a history of cancer [39].Despite recent improvements in antiemetic administration, chemotherapy-induced nausea and vomiting (CINV) are still considered a major AE in cancer treatments [40], [41], [42]. In a recent retrospective study, 78% of the 98 breast cancer patients treated with chemotherapy still reported CINV despite receiving specific treatment, and more than two-thirds blamed these AEs for the significant impact on their quality of life [40].The prevalence and pain management of metastatic cancer were studied in a French study conducted in 233 patients (72% of whom had breast cancer) seen in an outpatient clinic appointment in 2013 and 2014, outside the framework of the MBC announcement [43]. Fifty-five per cent of MBC patients were algetic, 38% of whom had been in pain for at least three months; in 6 out of 10 cases, background pain was associated with pain attacks. Pain was managed in 83% of cases by the oncologist, in 68% of cases by the GP and in 16.5% of cases by a doctor specialised in pain or supportive care. The impact of pain on patient life was major: 79% reduction in usual domestic activities, 72% induced fatigue, 67% limitation of outdoor activities or movement, 55% reduction in sleep and 54% mood alteration [43]. In a Brazilian trial of 400 breast cancer patients, pain was reported in 86% of those with metastatic disease (122 MBC in the trial) with a direct negative impact on quality of life (assessed by the EORTC QLQ-C30 questionnaire) and functional capabilities [44]. Finally, in a 2018 French prospective study of 78 patients with MBC, three factors contributed significantly to improving their health: treatment as initially planned, disease control and adequate pain control [24].Cutaneous and mucosal side effects have recently been studied in patients with breast cancer. In the adjuvant setting, 24% of the 190 patients treated with chemotherapy had dermatological AEs after a median of 4.5 cycles; lesions developed for 6.2 days and improved only after an average of 25 days (vs. 6.2 days for mucositis) [45]. In another cohort, 250 patients, i.e. 35% of the 720 patients followed up in 2019 and 2020, presented at least one cutaneous AE; 86% of them were treated with chemotherapy and 14% with targeted therapy [46]. The impact of these AEs on body image and quality of life is widely documented [47, 48].The RÉALITÉS 2020–2021 survey showed that the psychological burden of MBC remains considerable in terms of anxiety and obstacles to carrying out plans. In another international study called BRIDGE in 1,342 women with MBC, despite the fact that 59% of women with MBC coped with an array of daily negative emotions and concerns, 74% of them were still able to enjoy life [49]. At the time of diagnosis (localised tumour), the perception of metastases is closely associated with death. The announcement of metastatic disease implies a change in the perception of the disease which must now be considered as a chronic disease of limited duration [21]. Women with MBC often experience decreased self-esteem and fears for the future [36]. All these factors promote neither the expression of future plans nor attainment of personal goals that are strongly disrupted by the experience of cancer and associated symptoms [50], [51], [52]. Sexual difficulties are frequently reported and there is regret over the lack of dialogue and support from healthcare professionals on this [20, 36].The results of subgroup analyses conducted in RÉALITÉS 2020–2021 suggest that there is a gap between public and private sectors in terms of the information given to patients and the amount of time and type of care that patients can access. However, as the study was not designed to evaluate differences in care management based on the type of care centre, further studies could help to establish the reasons behind the discrepancies found in this survey.The main limitation of this comparison between the two waves of the RÉALITÉS survey was patient recruitment, selected by a limited number of oncologists: 48 in 2015 and 57 in 2020–2021 out of a total of 1,675 French medical oncologists and radiotherapists [53]. Another limitation was that the characteristics of respondents were not superimposed. Compared to 2015, 2020–2021 patients were a little older (62 vs. 59 years old) and had experienced stronger pre-treatment. This greater “breakthrough” in the disease can change the perception of cancer management and constraints, and reduce the value of our comparison. The arrival of new significant therapeutic options between 2015 and 2020 has modified disease management in some MBC patients (particularly those with an HR + HER2- and TN tumour) and the perception of their management. Finally, although validated questionnaires to assess quality of life in cancer patients exist, they were not used in this study. Indeed, the objective of the RÉALITÉS studies was not to provide a quality of life assessment tool but to gather information about the experience and satisfaction with their cancer management of women with MBC. Therefore, we specifically developed the questionnaires used in the RÉALITÉS 1 and 2 to meet this objective and to be easily completed by patients alone.Nevertheless, the large size of our sample, its homogeneity (only MBC) and, above all, repetition of the same study methodology five years after the first wave, allowed a comparative analysis that, to our knowledge, is unprecedented.ConclusionsBetween 2015 and 2020–2021, the RÉALITÉS survey has shown that important aspects of the management of patients with MBC has progressed, including the quality of information received and interactions with the oncologist. However, there are still important areas for improvement: access to supportive care, reduction and management of AEs, and the psychological impact of a relapse. Different solutions are possible, such as training oncologists in supportive care and improving information materials given to patients to improve knowledge of the disease and its treatments. A greater transfer of follow-up tasks to advanced practice nurses, GPs, community nurses, community pharmacists and the involvement of patient associations throughout the treatment plan would promote improved access to care and more comprehensive cancer management. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png ONCOLOGIE de Gruyter

Experience of patients with metastatic breast cancer in France: results of the 2021 RÉALITÉS survey and comparison with 2015 results

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de Gruyter
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© 2023 the author(s), published by De Gruyter, Berlin/Boston
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10.1515/oncologie-2022-1018
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Abstract

IntroductionIn 2020, 2.26 million women were diagnosed with breast cancer, making it the most diagnosed cancer among women worldwide [1]. Through recent improvements in management, 70–80% of patients diagnosed at an early stage have an increased chance of recovery [2]. Unfortunately, in 20–30% of cases, cancer progresses to a metastatic stage [3]. Metastatic breast cancer (MBC) is a chronic disease that requires long-term treatment to slow its progression. Although supportive care is a major asset in reducing the side effects (physical and psychological) of MBC and its treatments [4], the latter can considerably impact patient quality of life and can represent a barrier to the implementation of patients’ personal and/or professional plans [5]. The incurable nature of MBC–combined with the unpredictable course of disease–increases patient vulnerability and strengthens their sense of inability to limit disease progression and improve their daily life [5, 6]. Patients’ knowledge of the disease and of care provision, as well as identification of the physical and psychological impact of MBC by healthcare professionals, are essential elements to help patients live better with their disease and facilitate implementation of a personalised care strategy [4, 7]. Unfortunately, there is little research on patient experience and solutions to improve quality of life [8, 9].In this context, the RÉALITÉS study was set up in 2015 to identify different stages in the patient MBC treatment plan and analyse their experience with the disease, its treatments and their impact on daily lives [10]. The results of this first survey of 230 women with MBC showed an overall patient satisfaction with their care, but a significant negative impact of the disease on daily life and a need for additional information to patients [10]. Of the patients surveyed, only 65% were aware of the metastatic component of their cancer [10]. When the diagnosis of metastatic disease was shared, 60% of patients reported feeling supported and listened to, although half of them (49%) did not fully understand the information provided by the physician [10]. Generally, responding patients–and particularly those receiving chemotherapy–reported numerous adverse events (AEs) [10].In recent years, the development of many therapies has improved patient prognosis and offered new perspectives [11]. CDK4/6 inhibitors are now recommended in combination with hormone therapy in patients with hormone-dependent MBC and HER2- (negative to the human epidermal growth factor receptor 2) at the metastatic stage [11], [12], [13], [14]. For patients with HER2+ MBC, first-line chemotherapy with trastuzumab and pertuzumab significantly improved survival. Other second-line HER2 inhibitors are available and have also had a considerable impact on patient outcomes [15]. In triple-negative MBC, first-line immunotherapy for PD-L1 positive tumours and PARP inhibitors for BRCA germ mutation, together with second-line sacituzumab-govitecan treatment, changed the management when only chemotherapy could be previously prescribed [16].The RÉALITÉS 2 survey was set up with two objectives: highlight any evolution relating to patients’ understanding of their disease and to highlight satisfaction with the global management of their cancer since the first RÉALITÉS study in 2015; via a mirror survey with the patient’s oncologist to better assess knowledge of their disease and treatments implemented. This article analyses “patient” data collected in 2020–2021 and compares them with those of 2015 when possible. Mirror physician/patient data collected via this survey will be published at a later date.MethodsRÉALITÉS 2 was a national survey conducted from 21 September 2020 to 8 February 2021 among French oncologists and patients. Patients were recruited through their oncologists who had previously agreed to participate in the survey. To be included in the survey, oncologists had to be actively treating at least 10 patients with MBC. Five hundred and three doctors treating patients with breast cancer were contacted by telephone or email. Seventy of them met the inclusion criteria and were informed about the objectives of this survey and how to participate in it, and 57 physicians agreed to take part and to include up to six volunteer patients each. Patients were sought for the survey based on a diagnosis of MBC, with no other specific selection criteria. Each patient included in the survey was asked by their physician to complete a paper-based self-administered questionnaire that took around 30 min to complete (Supplementry Figure 1). Developed by a multidisciplinary scientific committee, it consisted of 36 questions covering sociodemographic data (age, place of residence, profession), disease monitoring (healthcare professionals consulted, type of healthcare facility), knowledge of the disease (metastatic component, tumour status), diagnosis of the metastatic disease, treatments and their impact, particularly in terms of adverse events (AEs), supportive care, global perception of disease, information sought by patients and suggestions for improving disease management. A descriptive statistical analysis of these data was conducted. Quantitative variables were expressed as means and standard deviations (SD), medians and intervals, and qualitative variables were expressed as numbers of individuals and percentages. To assess the impact of certain criteria on responses, such as the type of centre where surveyed patients were treated, sub-populations were compared using the Student’s t-test for averages and the Chi-square test for percentages on the 2020–2021 data. The significance threshold was defined for a p value <0.05.ResultsProfile of responding patientsTwo hundred and sixty-six patients and 57 physicians responded to the RÉALITÉS 2 survey conducted in 2020–2021 while 230 and 48 respectively had participated in the 2015 RÉALITÉS 1 survey. The characteristics of participating patients are described in Table 1. Patients in the RÉALITÉS 2 survey were on average 62.3 years old (vs. 59.2 years in 2015, p<0.01). More than half were retired (56 vs. 48% in 2015, p<0.1), one-third were on sick leave/occupational disability (31 vs. 34% in 2015, NS) and 12% (vs. 15% in 2015, NS) were employed. Compared to 2015, more of these patients had children (85 vs. 75%, p<0.01) or belonged to a patient association (8 vs. 0%, p<0.01).Table 1:Profile of patients participating in the survey.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)Average age, years62.359.2p<0.01Family status, %With a partner5453NSAlone2427NSWith family2217NSAt home00NSIn a retirement home01NSNR02NSWith children, %8575p<0.01Employment status, %Retired/not active5648p<0.1On sick leave/disability3034NSEmployed1215NSNR23NSDistance from hospital to home, %<30 min travel time4847NS>30 min and <1 h travel time3434NSAbout 1 h travel time1013NS>1 h and <2 h travel time55NS>2 h travel time01NSNR30NSCurrent or former occupation, %Self-employed farmer or fisherman27NSCraftsman, merchant, business owner108NSManager, executive/freelance812NSIntermediate profession/teacher1412NSEmployee4536NSLabourer97NSNot working912NSNR36NSMember of a patient association, %80p<0.01Patients mentioning the metastatic stage, %7665p<0.01Patient-reported tumour status, %HR + HER2-1920NSHR + HER2+78NSHR-HER2-87NSHR-HER2+34NSDo not know, other, NR6361NSPhysician-reported centre of care, %University/regional hospital centre21NANAHospital centre39NANACancer centre21NANAPrivate clinic19NANAHER2, human epidermal growth factor receptor 2; NA, not applicable; NR, no response; NS, not significant; HR, hormone receptor.Patients interviewed in 2020–2021 showed better knowledge of the metastatic stage (76 vs. 65%, p<0.01) and identical knowledge of their tumour status (hormone dependent, HER2 overexpression, triple negative) vs. 2015 (37 vs. 39%, NS; Table 1).Current or past treatmentsCompared to the first survey, patients experienced more pre-treatment, including hormonal therapy, targeted therapy, radiation therapy sessions, or previous/current surgery (Table 2).Table 2:Current and past treatments of responding patients.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)Current and prior treatments, %Chemotherapy7267NSHormone therapy6041p<0.01Targeted therapy4324p<0.01Radiotherapy5319p<0.01Surgery458p<0.01Other/do not know71p<0.01Current treatment, %Injectable treatment5462p<0.05Multiple drugs per day4555p<0.05NS, not significant.At the time of the survey, 99% of respondents received at least one treatment for their MBC (vs. 97% in 2015, NS). Compared to 2015, significantly more patients felt well when on their treatment in 2020–2021 (73 vs. 60%, p<0.01), did not find it at all restrictive (21 vs. 11%, p<0.01) or did not want to stop it at all (38 vs. 24%, p<0.01). These global data masked sensitive differences depending on the nature of the treatment received; chemotherapy was associated with a significantly more negative perception (Figure 1).Figure 1:Perception of current treatment.The same applied to AEs, affecting 82% of responders on chemotherapy (vs. 77% in 2015, NS), 61% of those on hormone therapy (vs. 50% in 2015, NS) and 66% of those on targeted therapy (vs. 50% in 2015, NS).In all treatments combined, fatigue remained the most reported AE (82% of patients in 2015 and 2020–2021), particularly in patients coming from a university/regional hospital centre (94.7%, p<0.001), followed by nausea, hair loss, pain and skin dryness for 48, 46, 43 and 41% of 2020–2021 responders, respectively (Figure 2). As in 2015, patients reported a significant negative impact of these AEs on their daily lives (Figure 2).Figure 2:Adverse events (AE) experienced and impact on patient daily lives.Regarding information received on treatment, 74% of patients were able to ask their doctor their questions, 74% felt well supported and 81% said they were informed about AEs of treatments; percentages were significantly higher than in 2015 (Table 3).Table 3:Information received about current treatment.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)I feel well informed about this treatment83%79%NSThe doctor has informed me of any possible adverse event(s) experienced with this treatment81%71%p<0.05I was able to ask any questions I wanted about this treatment74%66%p<0.05Regarding this treatment, I felt well supported74%66%p<0.1NS, not significant.Metastatic disease announcement consultationGlobally, the time dedicated to the announcement of metastatic disease was considered sufficient by 83% of patients surveyed in 2020–2021; the percentage increased compared to 2015 (77%, p<0.1). Patient perception of this announcement also improved in 2020–2021 compared to 2015: a total of 78% felt their doctor had taken the time to listen to them (vs. 68% in 2015, p<0.05); 73% were able to ask their questions (vs. 58% in 2015, p<0.01), 74% felt well supported (vs. 63% in 2015, p<0.01) and 62% understood the information provided by the doctor (vs. 51% in 2015, p<0.05) (Table 4). However, results from 2020 to 2021 subgroup analyses showed disparities depending on the type of hospital: fewer cancer centre (Centre de Lutte Contre le Cancer–CLCC) patients felt listened to (67.3%, p<0.05) while more patients treated in private clinics felt able to ask their questions (84%, p<0.05).Table 4:Perception and understanding of the announcement of metastatic disease.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)Sufficient time was given to announce metastases83%77%p<0.1The doctor took the time to explain82%81%NSThe doctor took the time to listen to me78%68%p<0.05I was able to ask the questions I wanted73%58%p<0.01I felt well supported74%63%p<0.01The doctor gave me the information I wanted69%63%NSI have understood the information provided by the doctor62%51%p<0.05NS, not significant.As in 2015, half of patients surveyed reported having received a disease information leaflet (54 vs. 47% in 2015, NS) and one quarter received the contact details of a patient association (28 vs. 19% in 2015, NS) (Supplementary Table 1). In addition, more patients from hospital centres (62.5%, p<0.05) reported having received a disease information leaflet, and more patients from a private clinic (44%, p<0.001) received contact details of a patient association. Overall, fewer patients sought information from their healthcare professionals following the announcement of metastatic disease: 46% consulted their general practitioner (GP) in 2020–2021 (vs. 58% in 2015, p<0.01), 30% contacted their oncologist (vs. 53% in 2015, p=0.01) and 14% consulted a psychologist (vs. 27% in 2015, p<0.01; Supplementary Table 2).Supportive careExcept for the psychologist, who was consulted less in 2020–2021 than in 2015 (36 vs. 47%, p<0.05), and even less in CLCC (18.2%, p<0.001), patients consulted more frequently a social worker (36 vs. 26% in 2015, p<0.05), an aesthetic consultant (26 vs. 16% in 2015, p<0.01) and a physical activity facilitator (18 vs. 13% in 2015, p<0.1) (Figure 3). These results were even higher for patients in hospital centres and private clinics, who more frequently consulted a social worker (45.2%, p<0.05) and a physical activity facilitator (30%, p<0.05), respectively. These resources were deemed useful by 88% of patients (vs. 69% in 2015, p<0.05). The main reasons cited in 2020–2021 by the 46% of patients who did not receive supportive care were the absence of proposals by healthcare professionals (40% of cases), particularly in university/regional hospital centres (75% of cases, p<0.001), and the lack of desire to receive this type of care (41%), especially by patients from hospital centres (53.7%, p<0.05).Figure 3:Supportive care provided.Non-reimbursable expensesWhile fewer patients surveyed in 2020–2021 reported non-reimbursable expenses for their MBC (29 vs. 43% in 2015, p<0.01), the subpopulation analysis showed that patients who received supportive care reported significantly more non-reimbursable expenses than those who did not: 39 vs. 19% (p<0.01).Living with the diseaseCompared to 2015, several aspects of patient experience with their MBC changed positively: patients felt more informed (86 vs. 80% in 2015, p<0.1), spoke more to their friends and family (71 vs. 57% in 2015, p<0.01) and had less difficulty complying with their treatment (24 vs. 31% in 2015, p<0.1; Table 5). Other aspects, however, did not change since 2015 and showed a reduced quality of life in a large majority of patients with significant mental burden: such as thinking about the disease every day, anxiety during follow-up visits and obstacles to fulfilling their future plans (Table 5).Table 5:Living with the disease.RÉALITÉS 2 (2021) (n=266)RÉALITÉS 1 (2015) (n=230)I feel well informed about the disease86%80%p<0.1I am lucky to be well supported (family, friends); it helps me fight the disease84%80%NSIt’s a disease I think about every day72%71%NSI can easily talk about this disease with friends and family71%57%p<0.01I am always anxious before going to the hospital to see the doctor or do tests67%72%NSIt’s a disease that never leaves me alone64%67%NSThe disease prevents me from carrying out my plans and from thinking about the future64%69%NSI easily discuss this disease with other patients (in the hospital, for example)54%52%NSI find it difficult to meet my professional obligations as before26%42%NSI find it difficult to comply with my treatments properly; I often want to stop taking them24%31%p<0.1NS, not significant.DiscussionIn 2015, the RÉALITÉS 1 survey, the first large-scale study carried out in France on the experience of women with MBC, showed overall satisfaction of patients regarding their care and the support provided by the medical profession. In contrast, areas for improvement emerged regarding understanding information received, and the significant negative impact of the disease on daily life. In 2020–2021, the objective of the RÉALITÉS 2 survey was to measure any evolution in perception in patients with MBC regarding their disease and management.According to our study, management of MBC has changed positively in several aspects over the last five years. Patients who are better informed about their treatment are more likely to feel good when taking their treatment and not want to stop it. When it comes to announcing a metastatic disease, more people felt listened to and understood the information provided by their oncologist. Data collected from analyses of internet forums provide a less optimistic insight into this. An analysis of the French breast cancer platform “Les Impatientes” showed that patients frequently regretted having a lack of information and insufficient dialogue with healthcare professionals due to an incomplete understanding of their treatment plan [17]. Similarly, the 2013 pan-European patient survey in 216 responders showed that 51% of patients with locally advanced or MBC felt that their care would be improved if healthcare professionals listened more [18]. In a national sub-analysis of the large European study on social networks and MBC conducted between 2018 and 2020 in 14 European countries, Mazza et al. described that the needs most frequently expressed in the 8,410 French conversations analysed were unavailability of effective treatment, lack of effective screening and lack of empathy from certain healthcare professionals [19]. Conversely, a general review of the literature conducted in 2019 showed that most patients with MBC were satisfied with the emotional, psychosocial, informational and medical support received from relatives and healthcare professionals [20]. From a psychological point of view, the occurrence of MBC leads to an emotional charge that is at least equal to that of the initial diagnosis, with additional specific constraints: feeling that things could have been done differently to avoid a relapse, having to tell people about the disease again, uncertainty about the efficacy of treatments and fear of the spread of the disease in the body [21]. In addition, there may be a feeling of isolation, and a lack of understanding by society in general and the community of patients with localised breast cancer, in particular [21, 22]. Far from being contradictory, these perception differences illustrate the diversity of patient feelings towards the medical profession at this stage of the disease, ranging from recognition of the quality of information provided and the new treatment plan proposed, to the difficulty generated by the lack of a therapeutic solution that makes it possible to consider, as in the initial stage, a cure.In our 2020–2021 RÉALITÉS survey, evolution of supportive care was mixed. Consulting social workers, seeking aesthetic advice, and especially physical activity increased compared to 2015. However, almost half of patients still did not receive any complementary care, with 18% receiving no proposal of supportive care. In another survey conducted in Singapore in 411 patients with colorectal, breast or lung cancer, the satisfaction level relating to supportive care was low, despite being rated as important information [23]. In addition, the financial burden of non-reimbursed costs, which decreased in the overall sample, increased particularly in patients receiving this additional care. A prospective study carried out in France in 2018 on patients starting a new treatment for their MBC also showed an unequal use of supportive care: pain consultation = 43% of patients (24% in our 2020 survey); consultation with a psychologist = 37% (36% in our survey); physiotherapist = 30% (33% in our survey); social assistance = 22% (36% in our survey); aesthetic care = 18% (26% in our survey) and nutritional care = 18% (36% in our survey) [24]. In a recent literature review on supportive care in MBC, the authors pointed out that one key to optimal patient care is the management by an oncologist also trained in supportive care [25]. This is the notion of comprehensive care with the Anglo-Saxon concept of cure and care.In our survey, 36% of patients surveyed in 2020–2021 reported receiving advice about or a prescription for physical activity from their oncologist. This illustrates the increasing place of this complementary treatment in the therapeutic arsenal. Recent data demonstrating the effectiveness of physical activity in reducing fatigue, and in improving quality of life, psychological and emotional state of cancer patients and treatment compliance are numerous [26], [27], [28], [29], [30], [31], [32], [33]. The causes of under-use of supportive care, which is still too infrequent in MBC, are also better studied and include limitation of evidence on the feasibility and effectiveness of this advanced-stage care, and lack of knowledge of healthcare professionals and patients regarding the safety and benefits of such a practice [29, 32]. In terms of modalities, one-third of patients indicated a preference for group exercise under professional supervision, ideally with patients who also have metastatic cancer [34].Our survey shows that some aspects of the experience of MBC have not progressed favourably between 2015 and 2020–2021. Treatment AEs, particularly chemotherapy, are still strongly felt daily. It should be noted that the results of the oncologist-patient mirror survey (not presented here) show a lack of patient knowledge of their treatments, which may lead to bias in the declaration of tolerance. This lack of knowledge could be related to patients’ willingness to be informed. Indeed, a survey conducted in Italy in 2008 in 587 patients with breast, gastrointestinal or other forms of cancer showed that only 57% of cancer patients were keen to receive information regarding their treatment opportunities [35]. However, when looking at the European scale, the pan-European 2013 survey showed that 68% of patients with locally advanced or MBC wanted more information about future medical treatments and research [23]. At the metastatic stage, most women present treatment-related AEs, impaired quality of life, pain, fatigue or insomnia-related discomfort, sometimes associated with menopausal symptoms [19, 21]. Emotionally, episodes of depression and anxiety are common [21]. Often, these AEs are accepted with resignation, as a price to pay for the benefit of treatment and for which nothing can be done [36]. A French study showed that the diagnosis of cancer induces a significant reduction or even discontinuation of all activity in a majority of patients who were physically active before their diagnosis [30]. In a survey of 114 women with MBC for an average of 4.3 years and treated with chemotherapy (24%), hormone therapy (56%) or targeted therapy (14%), 86% of women reported at least one problem limiting their physical activity: difficulty running (58%), standing for an extended period of time (55%), exercising (33%) or performing domestic activities (32%) [34]. The main barriers reported were fatigue (54%), arthralgia or myalgia (42 and 29%), and dyspnoea (25%) [34].As in 2015, fatigue was the most frequently reported AE in our 2020–2021 RÉALITÉS survey (82% of patients), ahead of nausea (48%), alopecia (46%), pain (43%) and skin dryness (41%). In a 2016 meta-analysis involving more than 12,000 patients treated for breast cancer, reported rates of severe fatigue were between 7 and 52% with a median of 27% [37]. This rate seems to increase significantly in patients treated with chemotherapy. In a study of 67 patients treated for breast cancer between November 2017 and June 2019, clinically significant fatigue was reported in 46%, with two significant worsening factors: high number of treatments and presence of bone metastases [38]. This fatigue may persist beyond treatment, as shown by a recent Dutch study which compared 350 patients treated for breast cancer occurring at least five years prior with an equivalent sample in terms of age and consulting a GP, but without a history of cancer: after a median follow-up of 10 years, 27% of women still experienced persistent general physical and psychological fatigue, which is a significantly higher rate than women without a history of cancer [39].Despite recent improvements in antiemetic administration, chemotherapy-induced nausea and vomiting (CINV) are still considered a major AE in cancer treatments [40], [41], [42]. In a recent retrospective study, 78% of the 98 breast cancer patients treated with chemotherapy still reported CINV despite receiving specific treatment, and more than two-thirds blamed these AEs for the significant impact on their quality of life [40].The prevalence and pain management of metastatic cancer were studied in a French study conducted in 233 patients (72% of whom had breast cancer) seen in an outpatient clinic appointment in 2013 and 2014, outside the framework of the MBC announcement [43]. Fifty-five per cent of MBC patients were algetic, 38% of whom had been in pain for at least three months; in 6 out of 10 cases, background pain was associated with pain attacks. Pain was managed in 83% of cases by the oncologist, in 68% of cases by the GP and in 16.5% of cases by a doctor specialised in pain or supportive care. The impact of pain on patient life was major: 79% reduction in usual domestic activities, 72% induced fatigue, 67% limitation of outdoor activities or movement, 55% reduction in sleep and 54% mood alteration [43]. In a Brazilian trial of 400 breast cancer patients, pain was reported in 86% of those with metastatic disease (122 MBC in the trial) with a direct negative impact on quality of life (assessed by the EORTC QLQ-C30 questionnaire) and functional capabilities [44]. Finally, in a 2018 French prospective study of 78 patients with MBC, three factors contributed significantly to improving their health: treatment as initially planned, disease control and adequate pain control [24].Cutaneous and mucosal side effects have recently been studied in patients with breast cancer. In the adjuvant setting, 24% of the 190 patients treated with chemotherapy had dermatological AEs after a median of 4.5 cycles; lesions developed for 6.2 days and improved only after an average of 25 days (vs. 6.2 days for mucositis) [45]. In another cohort, 250 patients, i.e. 35% of the 720 patients followed up in 2019 and 2020, presented at least one cutaneous AE; 86% of them were treated with chemotherapy and 14% with targeted therapy [46]. The impact of these AEs on body image and quality of life is widely documented [47, 48].The RÉALITÉS 2020–2021 survey showed that the psychological burden of MBC remains considerable in terms of anxiety and obstacles to carrying out plans. In another international study called BRIDGE in 1,342 women with MBC, despite the fact that 59% of women with MBC coped with an array of daily negative emotions and concerns, 74% of them were still able to enjoy life [49]. At the time of diagnosis (localised tumour), the perception of metastases is closely associated with death. The announcement of metastatic disease implies a change in the perception of the disease which must now be considered as a chronic disease of limited duration [21]. Women with MBC often experience decreased self-esteem and fears for the future [36]. All these factors promote neither the expression of future plans nor attainment of personal goals that are strongly disrupted by the experience of cancer and associated symptoms [50], [51], [52]. Sexual difficulties are frequently reported and there is regret over the lack of dialogue and support from healthcare professionals on this [20, 36].The results of subgroup analyses conducted in RÉALITÉS 2020–2021 suggest that there is a gap between public and private sectors in terms of the information given to patients and the amount of time and type of care that patients can access. However, as the study was not designed to evaluate differences in care management based on the type of care centre, further studies could help to establish the reasons behind the discrepancies found in this survey.The main limitation of this comparison between the two waves of the RÉALITÉS survey was patient recruitment, selected by a limited number of oncologists: 48 in 2015 and 57 in 2020–2021 out of a total of 1,675 French medical oncologists and radiotherapists [53]. Another limitation was that the characteristics of respondents were not superimposed. Compared to 2015, 2020–2021 patients were a little older (62 vs. 59 years old) and had experienced stronger pre-treatment. This greater “breakthrough” in the disease can change the perception of cancer management and constraints, and reduce the value of our comparison. The arrival of new significant therapeutic options between 2015 and 2020 has modified disease management in some MBC patients (particularly those with an HR + HER2- and TN tumour) and the perception of their management. Finally, although validated questionnaires to assess quality of life in cancer patients exist, they were not used in this study. Indeed, the objective of the RÉALITÉS studies was not to provide a quality of life assessment tool but to gather information about the experience and satisfaction with their cancer management of women with MBC. Therefore, we specifically developed the questionnaires used in the RÉALITÉS 1 and 2 to meet this objective and to be easily completed by patients alone.Nevertheless, the large size of our sample, its homogeneity (only MBC) and, above all, repetition of the same study methodology five years after the first wave, allowed a comparative analysis that, to our knowledge, is unprecedented.ConclusionsBetween 2015 and 2020–2021, the RÉALITÉS survey has shown that important aspects of the management of patients with MBC has progressed, including the quality of information received and interactions with the oncologist. However, there are still important areas for improvement: access to supportive care, reduction and management of AEs, and the psychological impact of a relapse. Different solutions are possible, such as training oncologists in supportive care and improving information materials given to patients to improve knowledge of the disease and its treatments. A greater transfer of follow-up tasks to advanced practice nurses, GPs, community nurses, community pharmacists and the involvement of patient associations throughout the treatment plan would promote improved access to care and more comprehensive cancer management.

Journal

ONCOLOGIE – de Gruyter

Published: May 1, 2023

Keywords: metastatic breast cancer; patient experience; quality of life; supportive care; treatments

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