Implementing a PROACTive Care Pathway to Empower and Support Survivors of Breast Cancer.

PURPOSE: Optimal comprehensive survivorship care is insufficiently delivered. To increase patient empowerment and maximize the uptake of multidisciplinary supportive care strategies to serve all survivorship needs, we implemented a proactive survivorship care pathway for patients with early breast cancer at the end of primary treatment phase. METHODS: Pathway components included (1) a personalized survivorship care plan (SCP), (2) face-to-face survivorship education seminars and personalized consultation for supportive care referrals (Transition Day), (3) a mobile app delivering personalized education and self-management advice, and (4) decision aids for physicians focused on supportive care needs. A mixed-methods process evaluation was performed according to the Reach, Effectiveness, Adoption, Implementation and Maintenance framework including administrative data review, pathway experience survey (patient, physician, and organization), and focus group. The primary objective was patient-perceived satisfaction with the pathway (predefined progression criteria for pathway continuation ≥70%). RESULTS: Over 6 months, 321 patients were eligible for the pathway and received a SCP and 98 (30%) attended the Transition Day. Among 126 patients surveyed, 77 (66.1%) responded. 70.1% received the SCP, 51.9% attended the Transition Day, and 59.7% accessed the mobile app. 96.1% of patients were very or completely satisfied with the overall pathway, whereas perceived usefulness was 64.8% for the SCP, 90% for the Transition Day, and 65.2% for the mobile app. Pathway implementation seemed to be positively experienced by physicians and the organization. CONCLUSION: Patients were satisfied with a proactive survivorship care pathway, and the majority reported that its components were useful in supporting their needs. This study can inform the implementation of survivorship care pathways in other centers.

Facing points of view: Representations on adjuvant endocrine therapy of premenopausal patients after breast cancer and their healthcare providers in France. The FOR-AD study.

PURPOSE: Adjuvant endocrine therapy (ET) for 5-10 years is the backbone of the therapeutic strategy in patients with hormone receptor positive (HR+) early breast cancer (BC). However, long-term adherence to adjuvant ET represents a major challenge for most patients. According to prior studies, side effects of adjuvant ET are an important reason for poor adherence. In contrast, better communication and relational bond between patients and healthcare providers (HCPs) may improve adherence. The FOR-AD (Focus on non-adherence) study aimed at better understanding the representation of adjuvant ET by patients and their HCPs, in order to improve the care process. METHODS: Three focus groups of premenopausal women (receiving adjuvant ET for variable amount of time) and two focus groups of HCPs (including oncologists, pharmacists, and nurses) were conducted, each including around ten participants. Thematic analyses using a general inductive approach were constructed to report participants' representations. RESULTS: Two main themes emerged across groups, and appeared of major importance. Representations on adjuvant ET were often homogenous within each group, but differed between patients and their HCPs. The relationship between both groups was considerably discussed, particularly its importance in facilitating adherence to adjuvant ET. Suggestions on improving the care process were also given, such as systematically including psychologists in follow-up care paths and having a nurse navigator follow patients under treatment with adjuvant ET. CONCLUSION: The present qualitative exploration may help buildi future tailored interventions to improve adherence to adjuvant ET, in particular regarding the role of nurse navigators.

BEAUTY and the breast: is adjuvant chemotherapy the right time for a beauty boost? Lessons learned from a large randomized controlled trial.

PURPOSE: Beauty care (BTC) is offered at many cancer hospitals having a great uptake among patients. Nevertheless, its benefits in the Quality of life (QoL) of cancer survivors have not been assessed so far. METHODS: Our study aims to determine whether BTC improves patients' QoL related to their body image measured by the BRBI scale of the QLQ-BR23 questionnaire at the end of adjuvant chemotherapy, after breast cancer (BC) surgery. The BEAUTY study is a prospective, randomized, controlled intervention trial. The following patient-reported outcomes were filled before initiation of chemotherapy (T1) and after their last cycle (T2): EORTC QLQ-C30, QLQ-BR23, and Body Image Scale (BIS). Primary objective was improvement in the BIS of BR23 (BRBI). A qualitative assessment of patients' experience was performed at each cycle through a relevant questionnaire. RESULTS: In total, 269 (67%) patients filled BRBI at T1 and T2. Mean BRBI scores substantially decreased between T1 and T2 and were not different with or without BTC (p = 0.88). Qualitative assessment suggests impact of BTC in physical well-being and avoids thoughts related to the disease. CONCLUSION: A substantial proportion of patients have a poor body image and chemotherapy induced a substantial degradation of BRBI scores. Although BTC does not seem to impact BRBI scores, the qualitative assessment suggests some benefit of BTC in other domains. Our study highlights the need to assess patients-perceived body image and build tailored interventions at this critical phase of their disease and generates hypothesis for the impact of BTC among BC patients. Clinical trial registration The study is registered at ClinicalTrials.gov under the NCT01459003 number since October 25, 2011.

Feasibility of a video-based cognitive behavioral therapy for insomnia in French adult cancer outpatients: results from the Sleep-4-All-1 study.

BACKGROUND: Insomnia affects up to 63% of patients with cancer. Cognitive behavioral therapy for insomnia (CBT-I) is considered to be the non-pharmacological gold standard treatment, but it remains underutilized in France. Self-administered interventions offer new ways to overcome some of the barriers that restrict access to efficacious supportive care. OBJECTIVE: To assess the feasibility, among French adult cancer outpatients, of a validated Quebec video-based, self-administered, cognitive behavioral therapy for insomnia (VCBT-I). METHODS: A pre-post design with quantitative measures (Insomnia Severity Index, Edmonton Symptom Assessment System, Treatment Perception Questionnaire) and qualitative measures (semi-structured interviews) was used. RESULTS: One hundred and seventy-three cancer outpatients were self-screened for insomnia, and 57% (n=99) reported significant symptoms. Among them, 80% (n=79) agreed to participate in the VCBT-I. The download rate of the VCBT-I was 78% (n=62/79). Several technical and contextual barriers to the delivery and the applicability of the VCBT-I emerged. However, participants reported a high level of satisfaction, and some valuable benefits at post-immediate intervention (increased knowledge about sleep, better quality of sleep, and higher acceptance of the burden of insomnia), regardless of whether or not they still had insomnia. DISCUSSION: This study confirms that there is a demand for a VCBT-I, which was perceived as appropriate by a sample of French cancer outpatients with insomnia, but it also highlights some limitations in terms of implementation and practicality. Remote professional support appears to be a core need in order to address these issues and personalize the guidance process.

Decision of adjuvant chemotherapy in intermediate risk luminal breast cancer patients: A prospective multicenter trial assessing the clinical and psychological impact of EndoPredict® (EpClin) use (UCBG 2-14).

PURPOSE: Genomic tests can identify ER-positive HER2-negative localized breast cancer patients who may not benefit from adjuvant chemotherapy. Such tests seem especially interesting in "intermediate" clinico-pathological risk categories. The psychological impact of the decision uncertainty in these women remains largely unexplored. We assessed the clinical and psychological impact of EndoPredict® (EpClin), a clinico-genomic test, in these patients. METHODS: This multicenter, single arm prospective study (NCT02773004) enrolled patients for which adjuvant chemotherapy was uncertain, based on predefined criteria. The primary endpoint was the proportion of change between initial adjuvant decision and final administration of chemotherapy. Secondary endpoints included post-test (Day 17) and 1-year patient reported outcomes. RESULTS: One third of 200 evaluable patients had a high EpClin score (≥3.32867; 10 years cumulative risk of distance failure ≥10%). The overall change rate of chemotherapy decision was 72/200 (35.8%, 95% CI 29.2-42.4). Chemotherapy was withdrawn in 57 cases (28.4% [22.2-34.8]) and added in 15 (7.5% [3.8-11.2]. 6 changes (8%) were based on patients' decisions. Anxiety and distress levels increased at Day 17 when adding chemotherapy after the test result (p < 10-7 and 0.00022 respectively), while stable in other situations. At 1-year, all patients had returned to the baseline anxiety and distress levels (mean anxiety 51.5, +/- SD = 2.5 [max. 80], mean distress 3±1 [max. 10]). CONCLUSIONS: EndoPredict ® (EpClin) is clinically useful in deciding whether or not to administer adjuvant chemotherapy in patients with intermediate risk. A single-step decision is preferable since adding chemotherapy at a later stage increases anxiety and distress.

[Feedback on a complementary care program combining physical activity, mindfulness-based meditation and socio-aesthetic care]. / Retour d'expérience sur un programme de soins complémentaires associant activité physique adaptée, méditation basée sur la pleine conscience et soins en socio-esthétique.

INTRODUCTION: Increasing physical activity among cancer patients is one of the priority recommendations in tertiary prevention; the level of physical activity is one of the determining factors in reducing the risk of relapse and mortality. However, many barriers to initiation and maintenance of regular physical activity have been identified. A program combining bi-weekly adapted physical activity sessions, mindfulness-based meditation and socio-aesthetic care was put together in 2015, in a Cancer Center, in order to facilitate adherence and sustainable attendance. METHODS: Data on patient participation of program components, patient satisfaction, and psycho-corporal changes, collected in ecological conditions between 2015 and 2017 from 144 participants, were retrospectively analyzed to provide a first assessment. RESULTS: Nearly 60% of the patients were in treatment, 17% were metastatic. The average participation time was 9 months, with an average of one physical activity session per week. Changes were observed, both quantitatively and qualitatively, in terms of emotional state, sleep and body image. The overall satisfaction rate was 96%. DISCUSSION: The conclusions of the study support the continuation of the program. The methodological limitations of this pilot format may be overtaken in future research, which will allow further in-depth investigations into the effects of combined approaches on sustainable physical activity.

Patient satisfaction with a rapid diagnosis of suspicious breast lesions: Association with distress and anxiety.

Few studies have explored with standard measures patient satisfaction with care at the time of the diagnosis through rapid diagnostic pathways. This study aimed to assess satisfaction levels at the time of the diagnosis in a One-Stop Breast Unit and to examine associations with psychological states. An anonymous cross-sectional survey was conducted at a single center's One-Stop Breast Unit, to assess patient satisfaction regarding several aspects of the Unit. Two days after the diagnosis, 113 participants completed self-reported questionnaires evaluating satisfaction (Out-Patsat35), anxiety (State Anxiety Inventory), and psychological distress (Distress Thermometer). Overall, patients were very satisfied (80.7±20.7) with the One-Stop Breast Unit. The highest mean satisfaction scores concerned nurses' technical skills, interpersonal skills and availability. The lowest mean scores concerned physicians' availability, waiting time, and the provision of information. The results revealed a significant association between high state anxiety levels, lower levels of satisfaction with doctors' interpersonal skills (r=-.41, P<.001) and lower levels for information provided by nurses (r=-.38, P<.001). Moreover, greater psychological distress was associated with less satisfaction with the different aspects of care (doctors' interpersonal skills, doctors' availability and waiting-time). The results of regression models showed that doctor-related satisfaction scales explained 20% of the variance in anxiety (P<.01). Facing cancer diagnosis remains a stressful situation. However, our study suggested that a substantial part of this anxiety is sensitive to the quality of the patient-doctor relationship. Consequently, further efforts should be expended on adapting patient-doctor communication to improve patient reassurance.

Hereditary breast and ovarian cancer: successful systematic implementation of a group approach to genetic counselling.

The increase in referrals to cancer genetics clinics, partially associated with the "Angelina Jolie effect", presents a challenge to existing services, many are already running at full capacity. More efficient ways to deliver genetic counselling are therefore urgently needed. We now systematically offer group instead of standard individual counselling to patients with suspected Hereditary Breast and Ovarian Cancer. Group sessions last 30 min. The first twenty consist of a presentation by the genetic counsellor, the next ten of a discussion involving a cancer geneticist and a psychologist. A short individual consultation ensues, where personal and family issues are addressed and consent obtained. Blood is drawn afterwards. Satisfaction and knowledge are evaluated. We report data for the Oct-2014-Aug-2015 period. 210 patients attended group counselling, up to eight simultaneously. We always fitted them within a 4-h time frame. Mean satisfaction score was 41/43. Knowledge scores increased from 3.1/6 to 4.9/6 post-counselling (p value < 2.2 × 10-16). Thanks to group counselling, we have withstood increases in referrals without compromising care. The "Angelina Jolie effect" and rapid developments in personalized medicine threaten to overwhelm cancer genetics clinics. In this context, our innovative approach should ensure that all patients have access to approved services.

The challenge of rapid diagnosis in oncology: Diagnostic accuracy and cost analysis of a large-scale one-stop breast clinic.

PURPOSE: Rapid diagnosis is a key issue in modern oncology, for which one-stop breast clinics are a model. We aimed to assess the diagnosis accuracy and procedure costs of a large-scale one-stop breast clinic. PATIENTS AND METHODS: A total of 10,602 individuals with suspect breast lesions attended the Gustave Roussy's regional one-stop breast clinic between 2004 and 2012. The multidisciplinary clinic uses multimodal imaging together with ultrasonography-guided fine needle aspiration for masses and ultrasonography-guided and stereotactic biopsies as needed. Diagnostic accuracy was assessed by comparing one-stop diagnosis to the consolidated diagnosis obtained after surgery or biopsy or long-term monitoring. The medical cost per patient of the care pathway was assessed from patient-level data collected prospectively. RESULTS: Sixty-nine percent of the patients had masses, while 31% had micro-calcifications or other non-mass lesions. In 75% of the cases (87% of masses), an exact diagnosis could be given on the same day. In the base-case analysis (i.e. considering only benign and malignant lesions at one-stop and at consolidated diagnoses), the sensitivity of the one-stop clinic was 98.4%, specificity 99.8%, positive and negative predictive values 99.7% and 99.0%. In the sensitivity analysis (reclassification of suspect, atypical and undetermined lesions), diagnostic sensitivity varied from 90.3% to 98.5% and specificity varied from 94.3% to 99.8%. The mean medical cost per patient of one-stop diagnostic procedure was €420. CONCLUSIONS: One-stop breast clinic can provide timely and cost-efficient delivery of highly accurate diagnoses and serve as models of care for multiple settings, including rapid screening-linked diagnosis.

Telling the Truth With Kindness: Retrospective Evaluation of 12 Years of Activity of a Support Group for Children and Their Parents With Cancer.

BACKGROUND: Cancer in a parent can have harmful effects on a child's ability to cope with the situation, in particular if communication about the disease is limited. OBJECTIVE: The aim was to evaluate whether the parent-child group run by a psychoanalyst and a doctor at the hospital helps facilitate communication about the disease with a child and helps to sooth the child and his/her symptoms. METHODS: This qualitative retrospective study conducted among 61 families (71 adults, 19 children) using semidirected interviews made it possible to identify the expectations and benefits perceived by the parents and children. RESULTS: The main expectations of the parents were to meet professionals who would help them to speak about the disease and to help the children understand it better in order to reduce their symptoms. The parents' expectations were largely satisfied. As far as the children are concerned, they expressed more benefits (better understanding of the disease, reduction of symptoms, meeting similar others) than expectations. CONCLUSIONS: The group is a resource that helps both parents and children. Meeting similar others made it possible to justify each participant's own experiences and promote better communication during the continued course of the disease. IMPLICATIONS FOR PRACTICE: The benefits brought about by this group testify to the need to offer such support to a greater number of parents with cancer. Improvements to the way in which the group is organized are discussed.

Relations between arthralgia and fear of recurrence: results of a cross-sectional study of breast cancer patients treated with adjuvant aromatase inhibitors therapy.

PURPOSE: The aim of this study was to explore associations between arthralgia and fear of recurrence in breast cancer patients treated by aromatase inhibitors (AI). METHOD: We sent a set of questionnaires to 100 patients examining their pain characteristics, anxiety (STAI), depression (BDI-SF), quality of life (SF-36), fear of recurrence (FCRI), and representations of AI treatment (ad hoc questionnaire). Nonparametric tests were used to investigate between-group comparisons (arthralgia vs. nonarthralgia) in these domains as well as the associations between arthralgia and fear of recurrence. RESULTS: Of the 77 patients who returned the questionnaires (response rate = 77%), 60 (78%) reported arthralgia. The mean score of fear of recurrence exceeded the pathological threshold in the arthralgia group and was significantly higher than that in the nonarthralgia group (14.8 vs. 10.7, p < 0.01). Significant associations were observed between fear of recurrence and pain intensity (r = 0.274, p < 0.05) and pain relief (r = -0.409, p < 0.05). More than 80% of the total sample declared that they were well informed about the aim of AI, their side effects, and the risk of developing arthralgia. Fear of recurrence did not appear to be associated with representations of AI. CONCLUSION: The study revealed a close relationship between pain intensity and fear of recurrence. In particular, it showed that effective pain management was accompanied by a reduced fear of recurrence. Information, although essential, appeared insufficient to overcome patients' concerns about pain. Therefore, the implement of a systematic screening for arthralgia and the improvement of analgesic treatment are essential issues. New strategies for pharmacological and nonpharmacological treatment must be developed.

[Psychological adjustment in couples facing woman's breast cancer: perceptions of spousal support]. / Ajustement psychologique des couples confrontés à un cancer du sein: perceptions des comportements de soutien du conjoint.

This cross-sectional study for couples explores the relationship between the perceptions within the couple of the spouse's supportive behaviors and the psychological adjustment of both partners during treatment for breast cancer. Forty-eight women operated on for a non-metastatic breast cancer and their spouses completed questionnaires assessing psychological adjustment (STAI, BDI-SF), and the spouse's support behaviors during discussions about the disease (PSE). Support behaviors are positively valued by both partners, especially non-verbal comfort and concrete actions. Support by minimization is associated with fewer depressive symptoms in patients and spouses. For spouses, the positive perception of support by concrete action is associated with a lower depression score. Moreover, high adjustment difficulties for spouses are linked to greater perception differences between partners on emotional support and minimization. These results highlight the importance of non-verbal comfort and minimization for the perception of social support within the couple, and the usefulness of support by concrete actions proposed by spouses. Advices for professionals are available.

Changes in psychological adjustment over the course of treatment for breast cancer: the predictive role of social sharing and social support.

BACKGROUND: Although research on social sharing suggests it could be an important factor in subsequent adjustment, it has rarely been examined in combination with the nature of the support received by patients. The goal of this study was to determine whether and to what extent social sharing concerning the disease and perceived social support after breast surgery explain psychological adjustment at the end of the treatment. METHODS: One hundred two participants were recruited consecutively at a large cancer care center (Gustave Roussy, France). After surgery (T1) and at the end of the adjuvant treatment (T2), patients responded to self-report questionnaires assessing psychological adjustment (depressive symptoms and cancer-related distress), social sharing concerning the illness, and perceived social support (generic and cancer specific). RESULTS: When the initial levels of adjustment were controlled for, hierarchical multiple regression models showed that greater instrumental support at T1 accounted for favorable changes in depressive symptoms at T2. In contrast, the perception of aversive attitudes in the environment and the avoidance of social sharing explained an increase in intrusive cancer-related thoughts. CONCLUSION: The results suggest a negative impact of aversive attitudes from the environment on adjustment during treatment. It also confirms the importance of practical aspects of social support after surgery. In line with Lepore theory, sharing about the illness in a supportive environment may be of primary importance in the cognitive processing of cancer and thus may promote adjustment. These results have original implications for the counseling of patients and their relatives.

How social sharing and social support explain distress in breast cancer after surgery: the role of alexithymia.

Perceived social support has shown to be key to adjustment along the cancer trajectory, but results remain contradictory about the disclosure of the experience of the illness (social sharing) and may reflect the importance of patients characteristics. The authors explored the associations between social sharing, perceived social support, and emotional adjustment in nonmetastatic breast cancer patients and how alexithymia may impact these associations. One hundred and thirteen women with breast cancer from a cancer care center in Villejuif (France) were assessed after breast surgery. Participants completed measures of depression, negative affect, and alexithymia together with a self-description of social sharing of their disease experience and perceived social support. Higher depression and negative affect were related to a high level of emotional sharing, a low satisfaction with confidant's reactions, and a high perceived negative support. In comparison with low-alexithymia patients, those with high alexithymia showed positive associations between negative emotional outcomes and (1) negative social support and (2) emotional sharing. These results suggest that the relationships between social sharing/support and emotional outcomes depend also on individual characteristics, such as alexithymia. Assessing perceived social support and alexithymia in cancer patients is useful to identify who might benefit from social sharing. Interventions could focus on helping the social network and environment to adjust to the socioemotional characteristics of breast cancer patients along the cancer trajectory.

[Quality of life of young women with early breast cancer and their partners: specific needs result in the necessity of development of specific questionnaires for the patient and the partner]. / Qualité de vie des femmes jeunes ayant un cancer du sein localisé et de leur partenaire : nécessité de développement de questionnaires spécifiques pour la patiente et le partenaire.

Purpose. To determine the feelings of young women with early breast cancer concomitantly with their partners at different treatment periods in order to create a specific quality of life (QOL) scale for this population. Materiel and methods. It was a prospective, multicentre, qualitative study, in patients younger than 45 years old at diagnosis and living with a partner for at least six months. Patients and partners were interviewed by a psychologist, from the diagnosis disclosure until follow up, using non-directing individual talks. Results. Sixty-nine couples were interviewed. Analyses of the interviews have highlighted the impact of disease on eight dimensions: psychological, physical, family, social, couple, sexuality, domestic, professional and economic dimensions. These impacts are mostly negative and are present in all periods and even after treatment for follow up. Discussion. A multidimensional profile of this specific population was established. A QOL scale dedicated to this population is being validated.