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International audience; Context: Relatives of patients receiving palliative care are at risk for psychological and physical distress, and their perception of quality of care can influence patients' quality of life. Objectives: The purpose of this study was to develop and validate the QUALI-PALLI-FAM questionnaire (QUAlity of PALLIative car from FAMilies' perspective) to measure families' perception of and satisfaction with palliative care. Methods: An exploratory factor analysis was conducted, and we evaluated the questionnaire's internal consistency using Cronbach's alpha, its stability across various strata, and the correlation between the QUALI-PALLI-FAM (factors, total score, and global satisfaction) and the total score of the FAMCARE (FAMily satisfaction with CARE) questionnaire. Results: This multicentric prospective cross-sectional survey was conducted in seven French hospitals, namely, three palliative care units and four standard medical units with a mobile palliative care team. The questionnaire was completed by 170 relatives of patients (more than 90% of patients had advanced cancer). The final questionnaire included 14 items across three domains: organization of care and availability of caregivers, medical information provision, and confidence and involvement of relatives. Internal consistency was good for all subscales (Cronbach's α = 0.74–0.86). Our questionnaire was stable across various strata: age and gender (patients and relatives), Palliative Performance Scale scores, and care settings. The QUALI-PALLI-FAM total score was correlated with the total FAMCARE score. Conclusion: The QUALI-PALLI-FAM appears to be a valid, reliable, and well-accepted tool to explore relatives' perception of quality of inpatient palliative care and complements the QUALI-PALLI-PAT questionnaire. Further testing is required in various settings and countries.

Early palliative care is now recommended in international guidelines. A meta-analyze combining seven randomized studies has been published in 2007. It confirms that early palliative care improves patient's quality of life and reduces symptom burden. There is also a trend for the reduction of depressive disorder and the increase of overall survival. Other studies show that early palliative care improves quality of life of patient's relatives and reduces end of life care aggressiveness. Most of the time, early palliative care is introduced as soon as the diagnosis of advanced cancer is made, and the precise referral criteria need to be addressed. Other studies have assessed the palliative care consultation; patient-centered care, focusing on symptom management, filling information and education needs about illness and prognosis, helping psychologic adaptation and coping.

Background Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view. Methods Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire. Results A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers’ listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach’s α 0.5–0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS ≥ 60%, 40–50% and ≤ 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms’ severity and impact on life. Each subscale, except “possibility to refuse”, correlated with general satisfaction. Conclusions Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings. Trial registration clinicaltrials.gov NCT02814682, registration date 28.6.2016. Electronic supplementary material The online version of this article (10.1186/s12904-019-0403-z) contains supplementary material, which is available to authorized users.

Background Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients’ death in French palliative care units and their needs for support. Methods This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient’ death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients’ death based on an Hospital Anxiety and Depression score (range 0–42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient’ death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient’s death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives. Discussion This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives’ experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs. Trial registration NCT03748225 registered on 11/19/2018. Recruiting patients.

Context Advance care planning is essential to enable informed medical decisions to be made and to reduce aggressiveness in end-of-life (EOL) care. Objectives This study aimed to explore whether a question prompt list (QPL) adapted to French language and culture could promote discussions, particularly on prognosis and EOL issues, among advanced cancer patients attending outpatient palliative care (PC) consultations. Methods In this multicenter randomized study, patients assigned to the intervention arm received a QPL to help them prepare for the next consultation one month later. The main inclusion criteria were advanced cancer patients referred to the PC team with an estimated life expectancy of less than one year. The primary endpoint was the number of questions raised, globally and by topic. The secondary objectives were the impact of the QPL on psychological symptoms, quality of life, satisfaction with care, and coping styles at two months. Results Patients (n = 71) in the QPL arm asked more questions (mean 21.8 vs. 18.2, P = 0.03) than patients in the control arm (n = 71), particularly on PC (5.6 vs. 3.7, P = 0.012) and EOL issues (2.2 vs. 1, P = 0.018) but not on prognosis (4.3 vs. 3.6, not specified). At two months, there was no change in anxiety, depression, or quality of life in either arm; patient satisfaction with doctors' technical skills was scored higher (P = 0.024), and avoidance coping responses were less frequent (self-distraction, P = 0.015; behavioral disengagement, P = 0.025) in the QPL arm. Conclusion Questions on PC and EOL issues in outpatient PC consultations were more frequent, and patient satisfaction was better when a QPL was made available before the consultation.

This overview reports published data about the interaction between physical activity and sport during and after cancer on one hand and improvement in psychological parameters, survival and biological mechanisms underlying this effect on the other hand. Practising physical activity and sport during cancer modifies parameters assessing fatigue and quality of life and reduces symptoms of depression. An association also exists between the practise of physical activity and sport and overall and cancer-specific survivals, especially after breast cancer, colon cancer and prostate cancer. These benefits seem to be mediated by a modification of circulating levels of estrogens, insulin, IGF-1 and by a decrease in insulin-resistance, by alterations in the secretion of adipokines, and by a reduction in chronic inflammation through decreased levels of cytokines. There exist some obstacles to the practise of physical activity. These obstacles are mainly related to a fear of pain induced by physical activity and to overweight. These programmes of physical activity and sport cannot be offered to all patients since there are several contra-indications, with some being present since the initial visit and others appearing during cancer management either due to disease progression or related to iatrogenic effects. Whereas benefits from physical activity and sport among cancer patients seem obvious, there are still several pending clinical and biological issues.

A prospective phase II multicenter study was performed in two steps in paclitaxel-treated ovarian cancer patients in France. A French version of the four-item Functional Assessment of Cancer Therapy/Gynecologic Oncology Group-Neurotoxicity (FACT/GOG-Ntx) questionnaire was validated. This was then used to evaluate neurotoxicity in relation to erythropoietin treatment. Patients received standard second-line paclitaxel-based chemotherapy and erythropoietin for anemia. Neurotoxicity and hemoglobin levels were evaluated every cycle with the FACT/GOG-Ntx and NCI-CTCAE. The translated questionnaire was tested in 20 patients to confirm the translation accuracy. The final questionnaire was validated in 98 patients with internal consistency (Cronbach’s coefficient) and item correlation (Pearson’s r coefficient) tests. Neurotoxicity severity was analyzed according to erythropoietin intake (first three cycles versus no or late intake) and correlated with anemia. Patients received a median of six paclitaxel cycles (range 1–9). Neurotoxicity was validated in 484 questionnaires. Internal consistency was excellent with Cronbach’s coefficients of ≥0.89 at inclusion, after 3 cycles and at study end. Inter-question correlation was high with Pearson’s coefficients of 0.65–0.85. FACT/GOG-Ntx and NCI-CTCAE severity scoring was similar. Globally, the incidence of severe neurotoxicity (FACT/GOG-Ntx and NCI-CTCAE) was found significantly higher in patients with severe anemia. Of 98 evaluable patients, 31 received erythropoietin during the first three cycles. Mean hemoglobin level was significantly lower in this group from baseline to cycle 4; however, these anemic patients with early EPO intake did not develop an increase rate of severe neurotoxicity. The French FACT/GOG-Ntx questionnaire is a reliable and valid tool for assessing chemotherapy-induced neuropathy. This study raises the possibility that erythropoietin might play a neuroprotective role when administered with paclitaxel.

Objective: We assessed whether breast cancer survivors' (BCSs) supportive care needs, posttraumatic growth (positive psychological changes) and satisfaction with doctors' interpersonal skills could be related to physical activity (PA). Methods: A total of 426 BCSs were approached during the last week of treatment. Eight months later, 278 (65%) provided information on their PA levels. Ordinal logistic multiple regressions were performed. Results: PA levels included no PA (n = 68), some PA (n = 83), high PA levels more than twice or more than 2 h per week (n = 127). The multivariate model significantly explained 13% of PA variance (p = 0.001). An increase in posttraumatic growth total scores (proportional OR = 1.310; p < 0.05) and a decrease in physical and daily living supportive care needs subscale scores (proportional OR = 0.980; p < 0.001) and in satisfaction with doctors' interpersonal skill scores (proportional OR = 0.898; p < 0.05) were significantly associated with an increase in the likelihood of performing higher levels of PA. A lower educational level was associated with a decrease in the likelihood of performing PA. Conclusion: The prevalence of PA in BCSs should be improved. Positive psychological changes after a breast cancer experience might contribute to performing PA. Encouraging PA needs to be accompanied by the alleviation of physical symptoms.

Objective: To provide a qualitative description of a clinical pilot experiment in a French cancer center, conducted by a nurse after the treatment decision consultation attended by new cancer patients during the initial phase of the care process. Methods: The Psychological Distress Thermometer (PDS) and a problem checklist were administered to 255 patients before nurse consultation, helping her to manage the clinical interview, explore patient's distress and supportive care needs, and finally refer the patients in need to the required Supportive Care units. Results: Patients were primarily referred to the social service unit (35% patients), followed by the physiotherapy unit (23.9%) and the psycho-oncology unit (19.6% of patients). In cases of significant distress (43% patients with PDS>3), the percentage of patients referred to the psychosocial units increased (44% referred to the Social Unit, 35% to the Psycho-Oncology Unit). However, the main interest of our screening procedure resides in its qualitative and didactic dimension, based on clinical training and cooperation with healthcare professionals during the process of investigating patients' distress and their supportive care needs. Difficulties and limitations are also described. Conclusions: This first clinical experiment conducted among dedicated nurses involved in a Therapeutic Decision Consultation in a French cancer center has provided evidence in support of the idea that non-specialist professionals are able to identify patients' distress and their Supportive Care needs (particularly in the psychosocial field) provided that they have received appropriate training. Copyright © 2011 John Wiley & Sons, Ltd.

The objective of this study was to assess the prevalence and associated factors of sexual activity, sexual problems or sexual satisfaction in French early-stage breast cancer survivors (BCS).Eight hundred and fifty eligible, post-treatment (6 months-5 years) female patients, aged 18-70 years, randomly selected from a consultation list, were invited to fill in questionnaires exploring quality of life (EORTC QLQ-C30 and QLQ-BR23), body image scale, and sexuality (Sexual Activity Questionnaire-SAQ; Relationship and Sexuality Scale; French Sexual Behaviour Survey-CSF).Fifty-three percent of BCS agreed to participate. Participating women (n=378) were younger, more often premenopausal at diagnosis and with a more recent diagnosis than non-respondents. The prevalence of sexual problems was significantly higher in BCS compared with adjusted data from a French female representative sample (p0.0001). In logistic regression, no sexual activity (R(2) =0.37) or sexual dissatisfaction (R(2) =0.28) were associated with the feeling of emotional separation in the couple or of partner's fear of sexual intercourse, lower emotional functioning, poorer body image, or co-morbidities. In sexually active women (71% of respondents), lower frequency of sexual activity (R(2) =0.26), lower sexual pleasure (R(2) =0.22), or higher sexual discomfort (R(2) =0.22) were associated with the feeling of emotional separation in the couple or of partner's fear of sexual intercourse, lower emotional functioning, age (50 years), nausea, or insomnia (all Hosmer-Lemeshow tests: p=NS).Psychological factors including the perception of the couple relationship appeared prominent in BCS women's experience of sexual problems.

This pilot study was designed to evaluate the impact of management by the Interdisciplinary Supportive Care Department for Cancer Patients (Département Interdisciplinaire de Soins de Support pour le Patient en Oncologie-DISSPO) at the Institut Curie in Paris, France on patient quality of life and satisfaction with care.Patients hospitalised for cancer treatment and referred to DISSPO during their hospitalisation were invited to complete the European Organization for Research and Treatment of Cancer core quality of life (EORTC QLQ-C30) and patient satisfaction (EORTC IN-PATSAT32) questionnaires during the week following their initial management by DISSPO (T0) and 2 months later (T1). These patients were compared with control patients matched for age, gender, ward and period of hospitalisation in terms of quality of life and satisfaction with care.One hundred fourteen (77%) DISSPO patients at T0 and 72 (48%) patients at T1 and 102 (89%) control patients at T0 and 66 (57%) at T1 returned their completed questionnaires. Baseline characteristics of DISSPO patients and control patients were significantly different in terms of duration of the current hospitalisation, interval between the date of diagnosis of the cancer and inclusion in the study (both longer for DISSPO patients) and Karnofsky performance status (lower for DISSPO patients). For the 43 pairs of patients who completed the questionnaires at the two time points, significant independent positive effects of management by DISSPO and age (less than or equal to 60 years) were demonstrated for patient satisfaction in relation to the availability of the nursing and paramedical team. In particular, patients over the age of 60 not managed by DISSPO presented a significant reduction of patient satisfaction scores over the 2 months compared to age-matched patients managed by DISSPO.Management of cancer patients by an interdisciplinary supportive care department appears to have a positive impact on patient satisfaction in relation to availability of the nursing and paramedical team. These results need to be confirmed in a larger study.

This article reports on the clinical practice guidelines developed by a multidisciplinary group working on the indications and uses of the various available treatment options for relieving intestinal obstruction or its symptoms in patients with peritoneal carcinomatosis. These guidelines are based on a literature review and expert opinion. The recommended strategy involves a clinical and radiological evaluation, of which CT of the abdomen is a crucial component. The results, together with an analysis of the prognostic criteria, are used to determine whether surgery or stenting is the best option. In most patients, however, neither option is feasible, and the main emphasis, therefore, is on the role and administration of various symptomatic medications such as glucocorticoids, antiemetic agents, analgesics, and antisecretory agents (anticholinergic drugs, somatostatin analogues, and proton-pump inhibitors). Nasogastric tube feeding is no longer used routinely and should instead be discussed on a case-by-case basis. Recent studies have confirmed the efficacy of somatostatin analogues in relieving obstruction-related symptoms such as nausea, vomiting, and pain. However, the absence of a marketing license and the high cost of these drugs limit their use as the first-line treatment, except in highly selected patients (early recurrence). When these medications fail to alleviate the symptoms of obstruction, venting gastrostomy should be considered promptly. Rehydration is needed for virtually every patient. Parenteral nutrition and pain management should be adjusted according to the patient needs and guidelines.

Objective:To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death.Methods:The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part.Results:Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child.Significance of results:Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.