Qualitative evaluation of motives for acceptance or refusal of early palliative care in patients included in early-phase clinical trials in a French comprehensive cancer center: the PALPHA study.

PURPOSE: The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient's general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT. METHODS: Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model. RESULTS: Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence). CONCLUSIONS: The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.

Supportive care needs of adolescents and young adults 5 years after cancer: a qualitative study.

Introduction: Adolescent and young adult (AYA) survivors who have been treated for cancer during childhood and adolescence are at great risk of the physical, psychological, and social consequences of cancer and its associated treatments. However, compliance with long-term follow-up is low. One possible explanation is that follow-up care fails to meet the expectations of AYA survivors. This study explored the specific supportive care needs of AYA survivors of childhood and adolescent cancer five years post-diagnosis. Methods: Semi-structured interviews were conducted with 15 AYA aged 15 to 25 years old. Thematic analyses were conducted to establish categories of supportive care needs and classify them as being met or unmet. Results: Participants reported between 2 and 20 specific needs (M = 11), including needs concerning fertility issues and reassurance regarding relapse (each mentioned by 67% of AYA), followed by the need for locomotor care, follow-up coordination and multidisciplinary care (60% of AYA for each). Participants also reported needs regarding social relationships, administration and finance, and academic and professional domains. Most (69%) of these needs were reportedly unmet, including need of information about cancer repercussions and follow-up, support in managing fatigue and sleep problems, psychological assistance, and support from peers. Discussion: The supportive care needs are still considerable and varied in AYA survivors of childhood and adolescent cancer 5 years post-diagnosis and are largely unmet. As unmet supportive care needs highlight the gap between available care in follow-up and the real needs of AYA survivors, a better understanding of their supportive care needs and unmet needs, thanks to systematic needs assessment, would enable long-term follow-up care to be adapted, thereby improving compliance and quality of life.

An Integrated Cancer Prevention Strategy: the Viewpoint of the Leon Berard Comprehensive Cancer Center Lyon, France.

This article describes some of the key prevention services in the Leon Berard Comprehensive Cancer Center (CLB) Lyon, France, which are based on clinical prevention services, outreach activities, and collaboration with professional and territorial health communities. In addition, research is embedded at all stages of the prevention continuum, from understanding cancer causes through to the implementation of prevention interventions during and after cancer. Health promotion activities in the community and dedicated outpatient primary cancer prevention services for individuals at increased risk have been implemented. The CLB's experience illustrates how prevention can be integrated into the comprehensive mission of cancer centers, and how in turn, the cancer centers may contribute to bridging the current fragmentation between cancer care and the different components of primary, secondary, and tertiary prevention. With increasing cancer incidence, the shift toward integrated prevention-centered cancer care is not only key for improving population health, but this may also provide a response to the shortage of hospital staff and overcrowding in cancer services, as well as offer opportunities to reduce carbon emissions from cancer care.

Health Workers' Perception and Emotions Surrounding Teleconsultation in Pediatric Cancer Care During the COVID-19 Pandemic.

BACKGROUND AND AIMS: During the first lockdown of the coronavirus disease 2019 (COVID-19) pandemic, we developed a teleconsultation model and conducted a survey-based study with the aim to evaluate satisfaction and emotions of health workers (HWs), to assess the feasibility of teleconsultations, and to evaluate technical issues. MATERIALS AND METHODS: This is a prospective monocentric exploratory study based on synchronous, video consultations between HWs and pediatric patients treated for blood or solid malignancies or blood benign diseases. Every HW completed an online survey which covered technical aspects, data concerning satisfaction, quality of the interaction with the patient, and emotions felt after the teleconsultation. A score was calculated for each aspect. RESULTS: Eleven specialists participated in the study, and we selected 84 questionnaires. With a satisfaction rate of 74%, HWs felt mostly calm (80%), relaxed (70%), stress-free (69%), and relieved (65%). We calculated the following median scores: an overall satisfaction score of 6.67 (0 to 10), a global feeling score of 8.79 (3.33 to 10.00), and a quality score of 7.34 (2.50 to 10.00). A strong correlation between the quality of teleconsultation and the satisfaction of the HWs has been highlighted ( r =0.588). CONCLUSION: Our series is an encouragingly positive experience from the perspective of the HWs, their feelings, and perceptions.

[Integrative oncology: Report and place for a dedicated consultation in a comprehensive cancer center]. / L'oncologie intégrative : état des lieux et place d'une consultation dédiée dans un centre de lutte contre le cancer.

Progress in the care of cancer patients has brought out new needs that go beyond the scope of conventional medicine regularly. Integrative oncology allows patients, besides specific care, to access complementary therapies (CT); with the aim of improving in this case the quality of life and the future of the patients and to help them become actors, before, during and after the treatment of their cancer. As for breast cancer management, international recommendations have been given for several years in favor of the use of CT, especially mind-body therapies, and regarded as effective care. Being able to refer patients suffering from any tumors to CT, through a structured procedure, integrated into the care pathway, would improve overall cancer management and the quality of life of the patients during chemotherapy. Improved communication from the oncologist about CT could better the relationships between the oncologist and the patient, and would be a better way to reduce the choice of practices that might be at risk, while improving compliance with conventional treatment. In this context, we report the opening of an integrative oncology consultation within a comprehensive cancer center, detailing the procedure of the consultation, describing the patients and their expectations, as well as the proposals made to them. This type of consultation is still underdeveloped in France and will be the subject of studies in the field of Humanities and social sciences.

At the heart of the COVID-19 crisis: Perceived concerns of changes in long-term cancer care in French women with cancer.

OBJECTIVE: In the COVID-19 crisis context, the main objective of the study is to investigate factors associated with perceived concerns of change in long-term cancer care in patients currently under treatment. METHODS: A French population-based cross-sectional study was performed using an online questionnaire in April 2020. All persons currently receiving cancer treatment and belonging to the Seintinelles Association (https://www.seintinelles.com) were included in this present analysis. Individual sociodemographic characteristics, medical status and information regarding cancer care were collected. Multivariate binomial logistic regression analysis was performed. RESULTS: We included 298 women in the analysis. Younger participants (OR = 0.96 [0.94-0.99]), the need to visit healthcare facilities to receive treatment (OR = 2.93 [1.16-8.52]), deterioration in the quality of communication with the medical team since the beginning of the COVID-19 crisis (OR = 3.24 [1.61-7.02]) and being cared for by a university hospital or a public hospital (OR = 2.19 [1.16-4.23] versus comprehensive cancer centre) were associated with a perceived fear of change in long-term cancer care. CONCLUSION: To address patients' concerns regarding changes in their long-term cancer care, medical teams should consider the patients' own perceptions of the situation and provide clear, appropriate, precise information on cancer care, especially in the centres mostly affected by the COVID-19 crisis.

Reasons for acceptance and refusal of early palliative care in patients included in early-phase clinical trials in a regional comprehensive cancer centre in France: protocol for a qualitative study.

INTRODUCTION: A few studies have highlighted the potential synergy between early palliative care and inclusion in an early-phase clinical trial that may improve quality of life, reduce symptoms of exhaustion related to the side effects of treatment and allow patients to complete their treatment protocol. The primary objective of this qualitative study is to evaluate the reasons for acceptance or refusal of early palliative care in patients included in early-phase clinical trials. METHOD AND ANALYSIS: All patients from the Centre Léon Bérard (Comprehensive Cancer Centre in Lyon, France) who consent to one of the early-phase clinical trials proposed at the centre will be invited to participate in this study. The cohort will consist of a subgroup (n=20) of patients who accept palliative care together with their clinical trial, and a second subgroup (n=20) of patients who decline it. Patients will be interviewed in exploratory interviews conducted by a psychology researcher before the start of their clinical trial. The interviews will be audio-recorded. Patients will also be asked to complete quality of life and anxiety/depression questionnaires both before the beginning of the treatment and at the end of their clinical trial. The content of the interviews will be analysed thematically. Descriptive and comparative statistical analysis of both cohorts will also be conducted. ETHICS AND DISSEMINATION: Personal data will be collected and processed in accordance with the laws and regulations in force. All patients will give informed consent to participate. This study complies with reference methodology MR004 of the Commission Nationale de l'Informatique et des Libertés. The protocol has received the validation of an ethics committee (Groupe de Réflexion Ethique du CLB, number: 2020-006). The results will be disseminated through conference presentations and peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT04717440.

Sexual desire of French representative prostate cancer survivors 2 years after diagnosis (the VICAN survey).

PURPOSE: The prostate cancer impacts on the future life of survivors. The complexity of sexual health problems in prostate cancer survivors is underestimated or often reduced to the erectile dysfunction. Especially, factors influencing sexual desire of patients have to be more explored. This study aims to describe the therapeutic management of patients with prostate cancer and assess their sexual desire 2 years after diagnosis. METHODS: This study is part of the National VICAN survey (Vie après le CANcer) implemented in France in 2012. This analysis was performed on a population of 414 men who had prostate cancer. The questionnaire dealt with several topics including socioeconomic status, treatments received, and sexual desire. RESULTS: Prostatectomy (42.8%), radiotherapy + hormonotherapy (17.6%), and radiotherapy alone (12.8%) were the main treatments used. 41.3% of men stated that their sexual desire was all gone since disease. The "satisfying" perceived financial situation was significantly associated to a sexual desire loss (p = 0.008). Radiotherapy + hormonotherapy treatment only is significantly associated with a loss of sexual desire (P = 0.003). CONCLUSIONS: Two years after diagnosis, the sexual desire of prostate cancer survivors is deteriorated with the cancer experience. However, clinical characteristics do not seem to be decisive unlike a "satisfying" financial situation. Research about the impact of socio economics characteristics on sexual health should probably be engaged. Programs have to be developed in France to have personalized sexual support progressed for survivors and take spouses into consideration in this context.

A comparison of Australian and French families affected by sarcoma: perceptions of genetics and incidental findings.

AIM: To compare Australian and French perceptions of genetics and preferences regarding the return of incidental findings. METHODS: Participants from the International Sarcoma Kindred Study received a survey at intake to cancer referral units. A total of 1442 Australian and 479 French individuals affected by sarcoma and their unaffected family members responded to four hypothetical scenarios depicting hereditary conditions of varying treatability and severity. RESULTS: Australians' preference for the return of incidental findings was consistently higher than French for all scenarios. Country group differences were significant for two scenarios when individual characteristics were controlled through multivariable analyses. CONCLUSION: Findings support the need for guidelines that are sensitive to sociocultural context and promote autonomous decision-making.

Antiangiogenic effects in patients with progressive desmoplastic small round cell tumor: data from the French national registry dedicated to the use of off-labeled targeted therapy in sarcoma (OUTC's).

BACKGROUND: Desmoplastic small round cell tumor (DSRCT) is a very rare mesenchymal tumor that mainly affects teenagers and young adults with a mean age at diagnosis around 20-25 years. Although initial management still needs standardization, many centers will use multimodal treatment including intensive chemotherapy, extensive surgical resection followed by radiotherapy. Despite this, prognosis remains very poor and the median overall survival is 25 months. Recurrent disease is mainly treated by chemotherapy. Recently, due to the unmet medical need for recurrent disease, targeted therapies were explored for DSRCT. METHODS: In this study, we assessed the response rate and progression free survival in nine cases of progressive DSRCT included in the OUTC's registry and treated with antiangiogenics targeted agents (sunitinib, sorafenib and bevacizumab). OUTC's, a French national registry, collects data about the use of off-label targeted therapy in sarcoma. RESULTS: Eight males and one woman were included, with median age at diagnosis of 27.3 years (range from 9 to 48 years). They received a mean 3 lines (2-5) of treatment before antiangiogenic agent initiation. Six patients received sunitinib, two received sorafenib and one bevacizumab. Median progression free survival was 3.1 months (range 2-5.5 months) and best response observed was 5.5 months stable disease. Most patients had manageable low-grade toxicities, mainly fatigue, abdominal pain and skin toxicity. CONCLUSIONS: Despite very limited activity of antiangiogenics in our study, prospective collection of cases of these rare tumors together with molecular data should guide therapeutic decision and enhance outcome.

Off-label use of targeted therapies in osteosarcomas: data from the French registry OUTC'S (Observatoire de l'Utilisation des Thérapies Ciblées dans les Sarcomes).

BACKGROUND: The objective of this study is to explore the off-label use of targeted therapies (TTs) for patients with osteosarcoma registered within the French Sarcoma Group--Bone Tumor Study Group (GSF-GETO) national registry. METHODS: All patients with an osteosarcoma, registered between January 1, 2009 and July 15, 2013 were analyzed. RESULTS: Twenty-nine patients with refractory relapsed osteosarcomas received 33 treatment lines of TTs. The median age at the beginning of treatment was 19 years (range 9-72). The median number of previous lines of chemotherapy was 3 (range 1-8). Before inclusion, 3 patients were in second complete remission, 26 were in progression for metastatic relapse. Twenty-three patients received sirolimus (in combination with cyclophosphamide for 18); 5, sunitinib; 4, sorafenib; and one, pazopanib. Stable disease was observed for 45.5% of patients (95% Confidence Interval (CI) [20-52.8]). The median Progression-Free Survival (PFS) was 3 months (95% CI [2-5.4]) for patients treated by sirolimus and 1.8 months (95% CI [1.3-2.8]) for patients receiving multi-targeted tyrosine kinase inhibitors; 6-month PFS 15%. The median Overall Survival (OS) was 6.8 months (95% CI [4.7-12.1]), and one-year OS was 24%. In a multivariate analysis, PFS was superior for patients receiving sirolimus compared to other TTs (Hazard Ratio (HR) = 2.7, 95% CI [1.05-7.1]). No toxic death was reported. Grade 3 and 4 toxicities were observed in 27 and 6% of cases respectively. CONCLUSION: Off-label TTs, especially sirolimus, reported benefit in the treatment of refractory osteosarcomas with an acceptable toxicity profile, including in pediatric population.