Breast cancer survivors' opinion on personalizing endocrine therapy and developing informative tools.

Understanding breast cancer survivors' perspectives is critical to personalizing endocrine therapy (ET) in the adjuvant setting. A nationwide survey among breast cancer survivors was proposed in France, in collaboration with patient advocacy organizations, to assess their perspectives on personalizing ET and developing dedicated informative tools. This survey explored patients' preferences regarding ET intake schedule, formulation, presentation (color, taste, shape, size, design, and packaging), combination with agents targeting ET-related adverse events, and a mobile application to support them during ET. Of the 1103 individuals who started the survey, 939 (85.1%) were eligible for enrollment and completed the survey. The majority of the participants considered that a personalized ET should take into consideration the intake schedule (n = 974, 90.7%) and swallowable tablet formulation (n = 606, 64.5%), without a preference for ET presentation (n = 619; 65.9%). The majority of the participants expressed a willingness to participate in a potential clinical trial evaluating the combination of ET with agents targeting ET-related adverse events at the start of ET (n = 752, 80.1%) or in the case of major ET-related adverse events (n = 778, 82.8%). The primary considerations were to have an uncompromised ET efficacy and a guaranteed reduction of adverse events. Last, a dedicated mobile application was considered helpful by 665 participants (70.8%). Informative tools should focus on the recommendations for dealing with adverse events (n = 593, 63.2%), the impact on the patient's daily life (n = 515, 54.9%), benefits (n = 504, 53.7%), and adverse events (n = 494, 52.6%) of ET. This survey paves the way for multimodal strategies that can include a personalized ET (e.g., ET in combination with agents targeting ET-related adverse events) and dedicated mobile applications to ultimately improve adherence.

[PAL-PRAT study: Healthcare workers' knowledge and perception of palliative practices in a Cancer Center]. / Quelle connaissance et quelle perception ont les professionnels de santé d'un Centre de lutte contre le cancer à propos des pratiques palliatives encadrées par la loi Claeys-Leonetti : étude PAL PRAT.

INTRODUCTION: The issue of end-of-life care is the subject of a sensitive debate in French society, particularly regarding the possibility for certain patients to have access to medical assistance in dying. The aim of this study was to assess the knowledge and opinion of healthcare providers on the care practices for patients at the end of life, as well as to highlight any specificities in their discourse. METHOD: A survey of healthcare providers' opinions, composed of closed and open questions, that were analyzed using a lexicometric approach, was distributed in a cancer center. RESULTS: The results of the study reveal a good knowledge of the different procedures. Professionals considered that advance directives should be systematically collected; a majority of them differentiated euthanasia from deep continuous sedation and perceived the latter as a means of relieving patients' suffering without inducing death. The different procedures related to the active assistance in dying were known by a majority of professionals and the survey did not identify a dominant trend concerning the will to practice euthanasia if the legal framework allowed it. Half of the participants considered their training insufficient, indicating the need to fill this gap. DISCUSSION: This survey underlines the importance of training and support for the professionals caring for patients in palliative situation and their relatives in France.

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.

[Implementation of a multimodal strategy for information and collection of advance directives in a comprehensive cancer center]. / Mise en place d'une stratégie multimodale d'information et de recueil des directives anticipées dans un Centre de lutte contre le cancer (CLCC).

INTRODUCTION: In France, advance directives (AD) remain unknown and underused by healthcare users and professionals. This is particularly true in oncology. This work was carried out with patients and caregivers of a Comprehensive Cancer Center to improve their appropriation and information. METHODS: The project, built by the Ethics Committee, the Patients Committee and the Palliative Care Team, made it possible to develop over 6 months a training program, an information procedure and several original documents. RESULTS: A total of 34 one-hour training courses for all professionals were organized. A procedure for making information available, including the right to draft ADs, has been implemented. This procedure is personalized, gradual and multi-professional. When a patient wishes to write his AD, he is accompanied by a dedicated team and benefits from a specific form, which enlighten values and preferences before addressing the desired level of therapeutic commitment. Communication elements were diffused, and a specific training on "anticipated discussions" was created. A dedicated space in the computerized chart makes it possible to locate the existence of ADs and to display them instantaneously. DISCUSSION - CONCLUSION: Based on the observation of the obstacles to the use of ADs, the strategy we implemented aims to provide information that is both efficient and ethically respectful for both patients and caregivers. ADs are only one element facilitating autonomy and anticipation, and must be associated with a shared continuous definition of the project and of the goals of care.

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.

"A story with gaps": An interpretative phenomenological analysis of ICU survivors' experience.

ICU survivors may experience various long-term sequelae, recognized as Post-Intensive Care Syndrome, that includes psychiatric symptoms: anxiety, depression, and post-traumatic stress disorders symptoms (PTSD). While it was hypothesized that an ICU diary could help patients after discharge, improving their hospitalization memories and quality of life, it is unclear whether it may reduce psychiatric disorders, in particular PTSD. We performed a qualitative exploration of survivors' subjective experience of their ICU stay, their representations, memories, meaning-making of their experience and use of their ICU diary. Five participants (ICU survivors, 3 men and 2 women, who received a diary) were included in this study. We conducted non-directive interviews 6 months after discharge. These interviews were transcribed and analyzed using Interpretative Phenomenological Analysis. Major recurring themes of discourse included: (1) The nightmare of the ICU experience: from an impression of vagueness to dispossession, (2) The positive image of health-care workers during intensive care, (3) The place of the relatives and health-care workers' writings in the diary: either a support or a barrier, (4) The difficult return back home, and daily life after intensive care. Participant's representation of their ICU experience seemed to reflect the meaning they had given it through their own reflections and that of health-care workers in the diary. For some participant, the diary was associated to the pain and strangeness of the ICU experience; therefore, their recovery required them to take some distance with it. The ICU diary allowed participants to construct their illness narratives, and to become aware of the presence and support of health-care workers. The diary was also perceived as the witness of a period they wished to forget. Trial registration: NCT02519725.

Familial experience of acute bacterial meningitis in children: a transversal qualitative study using interpretative phenomenological analysis.

OBJECTIVES: To capture the subjective experience of close family ascendants of acute bacterial meningitis survivors and to explore how they give meaning to this specific experience. DESIGN: A qualitative study of indepth interviews using interpretative phenomenological analysis. PRIMARY OUTCOME: Main meaning-making processes of participants' experience. SETTINGS: Participants were recruited through two associations of people affected by meningitis and their family ascendants. PARTICIPANTS: Convenience sampling of 11 women whose children or grandchildren were between 0.2 and 20 years old at the time of their meningitis diagnosis (M=4.06, SD=7.3). On average, 9.39 (SD=5.4) years had passed between the onset of illness and the interview. RESULTS: Six superordinate themes (meningitis disease; healthcare services and professionals; knowledge/ignorance; repercussions of the meningitis experience: 'life afterwards'; sick child attitudes/behaviour; and sibling attitudes/behaviour) and two main meaning-making processes in relation to participants' experience of meningitis were identified: (1) the sick child becoming a 'hero': comparison with other children; and (2) engaging action/attitude: finding the 'positive' of the traumatic experience and engaging action to improve the care system. These two processes underpin the psychological adjustment to meningitis and its consequences. CONCLUSIONS: This study provides a unique insight into close family members' first-hand experience with acute bacterial meningitis. Findings highlighted factors characterising the disease experience, the psychological adjustment of meningitis survivors' families and their meaning-making processes. These findings are important for research and clinical practice, demonstrating the multidimensional impact of the disease on family ascendants, their need for professional psychological support and the importance of direct involvement of parents in identifying key aspects of care.

ICU Survivors Experience of ICU Diaries: An Ancillary Qualitative Analysis of the ICU Diary Study.

OBJECTIVES: To investigate patients' experience of ICU diaries 6 months after ICU discharge among survivors. This study was designed to add insight into a large randomized study, which found no benefit of the ICU diary to post-traumatic stress disorder among critically ill patients having received mechanical ventilation. DESIGN: A preplanned qualitative substudy of patients receiving an ICU diary written by ICU caregivers and families. Six months after ICU discharge, survivors were contacted by a psychologist for a telephone interview using a semi-directive guide. SETTING: Thirty-five French ICUs. PATIENTS: All ICU survivors having received an ICU diary. INTERVENTION: An ICU diary written by both ICU staff and families. MEASUREMENTS AND MAIN RESULTS: Among the 332 patients randomized in the intervention group (having had an ICU diary filled by both ICU staff and families), 191 (57.7%) were alive at 6 months and 101 of 191 (52.9%) participated in a telephone interview. They were (median [interquartile range]) 64 years old (53-70 yr old); 65 (64.4%) were men, and 79 (78.2%) were medical patients. Duration of ICU stay was 13 days (8-21 d). Three themes were derived from the thematic analysis: 1) reading the diary: between emotion and pain, 2) how the diary helped, and 3) the bittersweet representation of the diary. For half of the patients, the diary is a good memory of difficult times (55/101, 54.5%), others seem to be more ambivalent about it (28/101, 27.8%), and 37 of 101, 36.6% see it as a painful representation of a time to be forgotten. CONCLUSIONS: When reading their ICU diaries, ICU survivors experienced mixed emotions, related to family messages, medical caregiving, and to the severity of their illness. Patients described diaries as a help or a hindrance to recovery, depending on their wish to remember the period or move on from it.

Difficulties encountered by physicians and mental health professionals in evaluating and caring for affective and behavioral problems in pediatric brain tumor survivors.

BACKGROUND: Pediatric brain tumor survivors (PBTS) present a high risk for emotional and behavioral disorders. When addressing these difficulties, differences in study designs; variety of and disagreement about diagnoses; and intricate links of emotional, behavioral, and cognitive issues may complicate the interpretation of studies and probably also the work of clinicians. We aimed to survey the difficulties perceived by physicians and mental health professionals in their practice and their interest in developing a new evaluative tool. METHODOLOGY: We surveyed 29 health professionals involved in the follow-up of this population. They completed questionnaires about their clinical practice (difficulties, needs, activities) and indicated diagnosis hypotheses and treatment plans on a clinical case developed for this study. RESULTS: Emotional and behavioral disorders were reported as difficult to assess for 93% of participants. The overlap of symptoms (90%) and the lack of an adapted diagnostic framework (90%) were the main reasons mentioned. Respectively 93%, 90%, and 65% of participants would at least "often" make referrals to psychological (93%), neuropsychological (90%), and psychiatric (65%) assessments and care. Family and group therapy were less common as was drug management. All participants were in favor of creating a tool to help with diagnosis and treatment. When responding to a clinical case, the heterogeneity of participants' responses highlighted their issues in diagnosing and managing these patients. CONCLUSION: This survey exemplifies the difficulties of health professionals related to the evaluation and management of affective and behavioral disorders experienced by PBTS. It underlines the need to help professionals by initiating systematic assessment strategies with this vulnerable population.

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.

Subjective experience of meningitis survivors: a transversal qualitative study using interpretative phenomenological analysis.

OBJECTIVES: (1) To capture the subjective experience of meningitis survivors during adolescence and adulthood and (2) To explore how they give meaning to this specific experience. DESIGN: A qualitative study of in-depth interviews using interpretative phenomenological analysis. SETTINGS: Participants recruited through an association of persons affected by meningitis and their relatives. PARTICIPANTS: Convenience sample of nine participants (seven women and two men) between the ages of 18 to 48 years (mean=28.3, SD=11.4), who personally experienced meningitis. RESULTS: Eight major themes and three main meaning-making processes in relation to the participants' experiences of meningitis were identified: (1) the ability to rely on the testimony of others, (2) the impossibility of meaning-making and (3) the possibility of post-traumatic growth. We detailed here five major themes, which appear critical to answering the objective of the study. CONCLUSIONS: This study provides a unique insight into the first-hand experience of surviving meningitis. Findings highlighted factors characterising the disease experience, the psychological adjustment of meningitis survivors and their meaning-making processes. These findings are important for both research and clinical practice, demonstrating the importance of direct involvement of meningitis survivors in identifying key aspects of care, which include the critical role of relatives, and the importance of investigating the need for training among healthcare providers on how to diagnose meningitis.

Serum Detection of Nonadherence to Adjuvant Tamoxifen and Breast Cancer Recurrence Risk.

PURPOSE: Nonadherence to long-term treatments is often under-recognized by physicians and there is no gold standard for its assessment. In breast cancer, nonadherence to tamoxifen therapy after surgery constitutes a major obstacle to optimal outcomes. We sought to evaluate the rate of biochemical nonadherence to adjuvant tamoxifen using serum assessment and to examine its effects on short-term, distant disease-free survival (DDFS). PATIENTS AND METHODS: We studied 1,177 premenopausal women enrolled in a large prospective study (CANTO/NCT01993498). Definition of biochemical nonadherence was based on a tamoxifen serum level < 60 ng/mL, assessed 1 year after prescription. Self-reported nonadherence to tamoxifen therapy was collected at the same time through semistructured interviews. Survival analyses were conducted using an inverse probability weighted Cox proportional hazards model, using a propensity score based on age, staging, surgery, chemotherapy, and center size. RESULTS: Serum assessment of tamoxifen identified 16.0% of patients (n = 188) below the set adherence threshold. Patient-reported rate of nonadherence was lower (12.3%). Of 188 patients who did not adhere to the tamoxifen prescription, 55% self-reported adherence to tamoxifen. After a median follow-up of 24.2 months since tamoxifen serum assessment, patients who were biochemically nonadherent had significantly shorter DDFS (for distant recurrence or death, adjusted hazard ratio, 2.31; 95% CI, 1.05 to 5.06; P = .036), with 89.5% of patients alive without distant recurrence at 3 years in the nonadherent cohort versus 95.4% in the adherent cohort. CONCLUSION: Therapeutic drug monitoring may be a useful method to promptly identify patients who do not take adjuvant tamoxifen as prescribed and are at risk for poorer outcomes. Targeted interventions facilitating patient adherence are needed and have the potential to improve short-term breast cancer outcomes.

Couples' Experience of the Decision-Making Process in Breast Reconstruction After Breast Cancer: A Lexical Analysis of Their Discourse.

BACKGROUND: One in 3 women with breast cancer will have a mastectomy and face the decision of whether to have breast reconstruction (BR). This decision is shared by the women and their physician, as well as discussed with her partner. OBJECTIVE: This study aimed to understand the decision-making process of BR through a lexical analysis of the women and their partners' discourse. A secondary aim was to identify the differences between the couples when the woman had, or did not have, BR. METHODS: We conducted semistructured interviews with 9 women, and their partners, who underwent a mastectomy after a first episode of breast cancer. A lexical analysis using IRaMuTeQ software was carried out. RESULTS: The analysis yielded 3 classes, each one being more represented by one of the different BR categories. Class 1 contained words reflecting a preoccupation with body modification. Class 2 was related to the surgery and its consequences. Words contained in class 3 were about the couples' issues regarding surgeries, treatments, and medical care. The question of temporality emerged particularly in classes 2 and 3. CONCLUSIONS: This study underlines the differences in the discourse of couples when talking about BR decision-making. Furthermore, it shows the importance of giving women time to think about BR and discuss its issues. IMPLICATION FOR PRACTICE: Decisions about BR are difficult to make and should always be discussed between the women and health professionals, as BR is not always possible or desired by women. Partners need to be included in treatment decision-making.

"Waiting for breast reconstruction": An interpretative phenomenological analysis of heterosexual couples' experiences of mastectomy for breast cancer.

PURPOSE: Treatment decisions, such as breast reconstruction is made by the dyad patient-physician, but close others can have an influence on the process. Shared decision-making models include close others but current studies generally investigate physician-patient interactions only. Moreover, little is known about couples' interactions throughout the breast cancer journey and treatment decision-making. Thus, the aim of the present study was to explore couples' experiences of mastectomy and breast reconstruction decision-making, the month following the mastectomy. METHOD: Ten unstructured individual interviews, with five couples facing mastectomy for breast cancer, were conducted. A dyadic interpretative phenomenological analysis (IPA) was carried on the data set. RESULTS: Eight super-ordinate themes emerged from the data. Couples' experiences were marked by the experience of the disease, the mastectomy and the impact they produced. The relationships with health professionals and partners were also important. Partners were not only supportive and protective, but directly (i.e., couples talk about treatments) and indirectly influenced (i.e., women make a decision taking into consideration how it will impact their couple) the women in their decision to have or not a breast reconstruction. The interpretative accounts underline how women and partners cope with the disease thinking about the aftertreatment. CONCLUSIONS: This study explains for the first time how intimate partners influence breast reconstruction decision-making and how couples cope individually with the disease immediately after mastectomy. Health professionals need to involve partners more in the treatment decision-making process as the women consider and talks to them about the choices they have to make.

Effect of an ICU Diary on Posttraumatic Stress Disorder Symptoms Among Patients Receiving Mechanical Ventilation: A Randomized Clinical Trial.

Importance: Keeping a diary for patients while they are in the intensive care unit (ICU) might reduce their posttraumatic stress disorder (PTSD) symptoms. Objectives: To assess the effect of an ICU diary on the psychological consequences of an ICU hospitalization. Design, Setting, and Participants: Assessor-blinded, multicenter, randomized clinical trial in 35 French ICUs from October 2015 to January 2017, with follow-up until July 2017. Among 2631 approached patients, 709 adult patients (with 1 family member each) who received mechanical ventilation within 48 hours after ICU admission for at least 2 days were eligible, 657 were randomized, and 339 were assessed 3 months after ICU discharge. Interventions: Patients in the intervention group (n = 355) had an ICU diary filled in by clinicians and family members. Patients in the control group (n = 354) had usual ICU care without an ICU diary. Main Outcomes and Measures: The primary outcome was significant PTSD symptoms, defined as an Impact Event Scale-Revised (IES-R) score greater than 22 (range, 0-88; a higher score indicates more severe symptoms), measured in patients 3 months after ICU discharge. Secondary outcomes, also measured at 3 months and compared between groups, included significant PTSD symptoms in family members; significant anxiety and depression symptoms in patients and family members, based on a Hospital Anxiety and Depression Scale score greater than 8 for each subscale (range, 0-42; higher scores indicate more severe symptoms; minimal clinically important difference, 2.5); and patient memories of the ICU stay, reported with the ICU memory tool. Results: Among 657 patients who were randomized (median [interquartile range] age, 62 [51-70] years; 126 women [37.2%]), 339 (51.6%) completed the trial. At 3 months, significant PTSD symptoms were reported by 49 of 164 patients (29.9%) in the intervention group vs 60 of 175 (34.3%) in the control group (risk difference, -4% [95% CI, -15% to 6%]; P = .39). The median (interquartile range) IES-R score was 12 (5-25) in the intervention group vs 13 (6-27) in the control group (difference, -1.47 [95% CI, -1.93 to 4.87]; P = .38). There were no significant differences in any of the 6 prespecified comparative secondary outcomes. Conclusions and Relevance: Among patients who received mechanical ventilation in the ICU, the use of an ICU diary filled in by clinicians and family members did not significantly reduce the number of patients who reported significant PTSD symptoms at 3 months. These findings do not support the use of ICU diaries for preventing PTSD symptoms. Trial Registration: ClinicalTrials.gov Identifier: NCT02519725.

How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?

BACKGROUND: It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context. METHODS: We selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year. RESULTS: Professionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child's non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools. CONCLUSION: The formulation of explicit criteria to assess the quality of life in this context, along with detailed recommendations provided by professionals, support the development of systematic measurement strategy. Such a strategy would contribute to the development of common care goals and further facilitate communication between professionals and with the family.

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.

The ICU-Diary study: prospective, multicenter comparative study of the impact of an ICU diary on the wellbeing of patients and families in French ICUs.

BACKGROUND: Post-intensive care syndrome includes the multiple consequences of an intensive care unit (ICU) stay for patients and families. It has become a new challenge for intensivists. Prevention programs have been disappointing, except for ICU diaries, which report the patient's story in the ICU. However, the effectiveness of ICU diaries for patients and families is still controversial, as the interpretation of the results of previous studies was open to criticism hampering an expanded use of the diary. The primary objective of the study is to evaluate the post-traumatic stress syndrome in patients. The secondary objectives are to evaluate the post-traumatic stress syndrome in families, anxiety and depression symptoms in patients and families, and the recollected memories of patients. Endpoints will be evaluated 3 months after ICU discharge or death. METHODS: A prospective, multicenter, randomized, assessor-blind comparative study of the effect of an ICU diary on patients and families. We will compare two groups: one group with an ICU diary written by staff and family and given to the patient at ICU discharge or to the family in case of death, and a control group without any ICU diary. Each of the 35 participating centers will include 20 patients having at least one family member who will likely visit the patient during their ICU stay. Patients must be ventilated within 48 h after ICU admission and not have any previous chronic neurologic or acute condition responsible for cognitive impairments that would hamper their participation in a phone interview. Three months after ICU discharge or death of the patient, a psychologist will contact the patient and family by phone. Post-traumatic stress syndrome will be evaluated using the Impact of Events Scale-Revised questionnaire, anxiety and depression symptoms using the Hospital Anxiety and Depression Scale questionnaire, both in patients and families, and memory recollection using the ICU Memory Tool Questionnaire in patients. The content of a randomized sample of diaries of each center will be analyzed using a grid. An interview of the patients in the intervention arm will be conducted 6 months after ICU discharge to analyze in depth how they use the diary. DISCUSSION: This study will provide new insights on the impact of ICU diaries on post-traumatic stress disorders in patients and families after an ICU stay. TRIAL REGISTRATION: ClinicalTrial.gov, ID: NCT02519725 . Registered on 13 July 2015.

The decision-making process for breast reconstruction after cancer surgery: Representations of heterosexual couples in long-standing relationships.

OBJECTIVES: Most people deal with intrusive life events such as cancer and the care trajectory together with their intimate partners. To our knowledge, no research has studied the involvement of the partner in the decision-making process regarding breast reconstruction (BR) after cancer. This study aimed to gain a better understanding of the couples' decision-making process for BR in the cancer context and particularly to investigate the partners' involvement in this process. METHOD: Eighteen participants (nine women who underwent a mastectomy following a first breast cancer and their intimate partners) took part in this study. We conducted semidirective interviews, and a general inductive approach was chosen to capture the representations of the couples. RESULTS: The women in the sample were aged between 33 and 66 years (M = 54, SD = 7.5) and their partner between 40 and 76 years (M = 59, SD = 11.6). The duration of their intimate relationship was on average 18 years (SD = 10.4; minimum = 4; maximum = 33). The analysis revealed 11 major themes. The two most salient ones were 'external influence' and 'implication of the partner'. The exploration of the subthemes revealed that the decision-making process is often reported as an interrelated experience by the couples and as a dyadic stressor. The partner's role is depicted as consultative and mostly supportive. CONCLUSION: These results provide new insights on the involvement of the partner in decision-making. Thus, it now seems crucial to develop a prospective study, which will help understand the progression of the decision-making process over time. Statement of contribution What is already known on this subject? Most people deal with intrusive life events such as cancer and the care trajectory together with their intimate partners. Shared decision-making between patients and physicians is now the 'gold standard' in Western Europe and the United States. However, in the context of breast reconstruction (BR) after cancer, factors guiding the decision-making process for BR, especially the potential involvement of the partner, are not very well understood. What does this study add? Provides a qualitative insight on the specific nature of heterosexual couples' representations regarding the decision-making process for breast reconstruction after cancer. Reveals that the decision-making process is often reported as an interrelated experience by the couples and as a dyadic stressor. Underlines the consultative function of partners with women engaged in breast reconstruction.

Describing and understanding depression in spouses of cancer patients in palliative phase.

BACKGROUND: The cancer patient's relatives and family constitute one of the patient's main sources of support throughout the disease. In recent years, several studies have emphasized the psychological vulnerability of spouses-caregivers with a high proportion suffering from anxiety and depression symptoms. The literature underlines several factors of detrimental outcomes but critical aspects of the spousal relationship as attachment were neglected. OBJECTIVES: This study aims at (1) describing depressive symptoms and depression among spouses who care for palliative cancer patients and (2) highlighting important factors explaining these symptoms. METHODS: We surveyed 60 spouses 1-6 months before the patient's death, (38 men, mean age: 62 years). RESULTS: We found a high frequency of depression symptoms (25%) in the sample. Higher depression scores were associated to insecure-anxious attachment style, more frequent venting of emotion and disengagement through substance use. CONCLUSION: Despite limitations, this description of caregivers' emotional adjustment in the palliative phase is unique. Future support programs could use the present information by focusing on emotional venting and avoidance. It also underlines the benefits for caregivers to develop organizational skills thanks to services that will lessen tasks or care responsibilities.