Co-construire un projet de recherche en oncologie avec les personnes concernées : retour d'expérience et leçons apprises.

Citizen participation in cancer research is growing intensively. In this context, the IMPAQT research project aims to promote the participation of (former) cancer patients in all stages of research. It was in response to the needs of the patient-researchers of the IMPAQT research group that the Perce-Neige project was developed. Based on the principles of community participation and collaboration, this project has a dual objective: methodological, aimed at understanding collaboration and characterizing the community approach, and empirical, which concerns caregivers’ perceptions of cognitive disorders related to cancer treatments. All the methodological tools aimed at meeting these objectives were co-constructed by the entire IMPAQT group. The research participation of the people concerned enables a novel way of linking expert and experiential knowledge and necessitates specific modes of organization. Also, the co-construction of research and methodological tools requires a regular updating of knowledge, as well as a capacity for reflection and an openness to reconsidering the approach. It also appears that the mobilization of the people concerned, who possess experiential knowledge, raises emotional issues. In conclusion, the participation of the people concerned in research constitutes an essential lever in the identification, elaboration, and social and psychosocial contextualization of health issues in cancerology.

Quality of life among French breast cancer survivors in comparison with cancer-free women: the Seintinelles study.

BACKGROUND: Health-Related Quality of life (HRQoL) in cancer survivors can be significantly affected in the long-term by various consequences resulting from differing levels of severity of cancer and its treatments. Our objective was to identify factors associated with HRQoL in breast cancer survivors (BCSs) and cancer-free women (CFWs). METHODS: We conducted a cross-sectional study in Seintinelles volunteers who answered online questionnaires between September 15, 2020 and February 5, 2021. HRQoL was measured using the World Health Organization Quality of Life-BREF questionnaire. We collected data on sociodemographic and health-related factors, lifestyle habits, coping mechanisms, locus of control, and health literacy. SAS version 9.4 statistical software was used for analyses. We performed descriptive analyses of the characteristics of the participants in each group and compared these characteristics between the two groups using the Chi2 test or the Student t-test. The adjusted means of the scores of different psychometric scales were calculated and compared using the method of least squares to fit general linear models (GLM) while adjusting for various factors. Multiple linear or multiple logistic regression models were used to assess the factors associated with WHOQOL-BREF scores, separately, in the two groups of participants. RESULTS: The study involved 722 BCSs and 1359 CFWs aged 26-75 years. BCSs had significantly lower physical health scores and were less likely to be satisfied with their health compared to CFWs (59.5 vs. 63.2, p < 0.0001; and 56.5% vs. 75.2%, p = 0.002, respectively). In both groups, some common factors were positively associated with physical health (high financial level, being professionally active, normal BMI, good health status, alcohol consumption, higher values (> 22) of internal locus of control); or inversely associated (neurological and sleep problems, over two medical consultations/year). In BCSs, treatment by mastectomy or radiation therapy/brachytherapy, a short-time since diagnosis, current cancer therapy, and presence of sequalae were inversely associated with physical health. BCSs' health satisfaction was diminished with lower values of coping by positive thinking (≤ 14) and seeking social support (≤ 18). CONCLUSIONS: HRQoL can be improved by developing strategies that increase internal locus of control and coping (positive thinking, problem-solving and seeking social support), and through health literacy.

Compliance with public health recommendations of cancer-free female research volunteers: the French Seintinelles study.

PURPOSE: Acting on modifiable risk factors can prevent approximately 40% of cancers. Knowing the factors that lead people to adopt healthy behaviors is crucial for designing effective primary prevention campaigns. Our study attempts to provide knowledge in this direction. METHODS: This cross-sectional study was conducted via the Seintinelles collaborative research platform in a community of women without a personal cancer history, and volunteering to take online questionnaires. We collected data on sociodemographic and health factors, knowledge of cancer risk factors, behaviors, and possible behavior changes (tobacco/alcohol use, diet, body weight, and physical activity) in the last 10 years. RESULTS: The study involved 1465 women aged between 18 and 84 years. Factors such as young age, living alone, and obesity were associated with some positive or negative behavior changes. Being professionally active and having comorbidities favored certain positive behavior changes, while having dependent children, living in a rural area, and being hospitalized were associated with negative or no change in behaviors. Lack of knowledge about modifiable risk factors for cancer was associated with the non-adoption of various healthy behaviors (consumptions of fruit and vegetables, processed and red meat; physical activity). Only 5.5% of participants currently reported to be compliant with seven public health recommendations (smoking; alcohol, fruit/vegetables, and red/processed meat intakes; body mass index; and physical activity). CONCLUSIONS: This study allowed to identify the need to increase the level of knowledge on modifiable risk factors for cancer among the general population and to better clarify the content of prevention messages.

Monitoring multidimensional aspects of quality of life after cancer immunotherapy: protocol for the international multicentre, observational QUALITOP cohort study.

INTRODUCTION: Immunotherapies, such as immune checkpoint inhibitors and chimeric antigen receptor T-cell therapy, have significantly improved the clinical outcomes of various malignancies. However, they also cause immune-related adverse events (irAEs) that can be challenging to predict, prevent and treat. Although they likely interact with health-related quality of life (HRQoL), most existing evidence on this topic has come from clinical trials with eligibility criteria that may not accurately reflect real-world settings. The QUALITOP project will study HRQoL in relation to irAEs and its determinants in a real-world study of patients treated with immunotherapy. METHODS AND ANALYSIS: This international, observational, multicentre study takes place in France, the Netherlands, Portugal and Spain. We aim to include about 1800 adult patients with cancer treated with immunotherapy in a specifically recruited prospective cohort, and to additionally obtain data from historical real-world databases (ie, databiobanks) and medical administrative registries (ie, national cancer registries) in which relevant data regarding other adult patients with cancer treated with immunotherapy has already been stored. In the prospective cohort, clinical health status, HRQoL and psychosocial well-being will be monitored until 18 months after treatment initiation through questionnaires (at baseline and 3, 6, 12 and 18 months thereafter), and by data extraction from electronic patient files. Using advanced statistical methods, including causal inference methods, artificial intelligence algorithms and simulation modelling, we will use data from the QUALITOP cohort to improve the understanding of the complex relationships among treatment regimens, patient characteristics, irAEs and HRQoL. ETHICS AND DISSEMINATION: All aspects of the QUALITOP project will be conducted in accordance with the Declaration of Helsinki and with ethical approval from a suitable local ethics committee, and all patients will provide signed informed consent. In addition to standard dissemination efforts in the scientific literature, the data and outcomes will contribute to a smart digital platform and medical data lake. These will (1) help increase knowledge about the impact of immunotherapy, (2) facilitate improved interactions between patients, clinicians and the general population and (3) contribute to personalised medicine. TRIAL REGISTRATION NUMBER: NCT05626764.

Health behaviour changes in female cancer survivors: The Seintinelles study.

INTRODUCTION: The number of cancer survivors increases and their risks of recurrence, second cancer, morbidity and death is high; measures to prevent these risks are thus critical. Knowing the factors that lead cancer survivor to adopt or not healthy behaviours is crucial for designing effective prevention campaigns and better support them in after-cancer. Our study attempts to provide additional knowledge in this direction. METHODS: This retrospective study was conducted via the Seintinelles collaborative research platform in a community of women with cancer volunteering to take online questionnaires. We collected data on sociodemographic factors and health, knowledge of cancer risk factors, and possible behaviour changes (tobacco/alcohol use, diet, physical activity) after cancer diagnosis. RESULTS: The study involved 1180 women aged between 26 and 79 years. Several cancer-related factors (cancer other than breast cancer, longer time since diagnosis, taking drug treatment for cancer, sequelae, negative evolution of the cancer) favoured certain positive changes in behaviour. Sociodemographic factors (age, habitat environment, currently employed, living status, dependent children) or factors related to health (general condition, presence of comorbidities, neurological problems, hospitalizations, body mass index) favoured or not certain changes in behaviour. Lack of knowledge about modifiable risk factors for cancer was associated with not adopting healthy behaviours after cancer. DISCUSSION: This study made it possible to identify important elements to be addressed in order to improve cancer risk prevention messages.

[Role of emotions and representations in the use of m-health among members of an online cancer-related community, the Seintinelles]. / Rôle des émotions et représentations dans le recours à la m-health chez les membres d'une communauté d'intérêt en ligne en lien avec le cancer, les Seintinelles.

INTRODUCTION: Virtual communities related to cancer, as with other chronic pathologies, seem to constitute a population likely to have a privileged relationship with e-health technologies. However, although many studies have sought to identify the characteristics of e-health users, none has focused specifically on members of health-related virtual communities. The objective is to identify the psychosocial determinants of the use of connected objects and health applications (COAs) among members of an online community of interest in cancer, the Seintinelles. METHODS: Data collection was performed using a self-questionnaire aiming to collect sociodemographic and psychosocial data. RESULTS: Only a minority of participants owned at least one COA. Positive emotions and the perception of COAs as a motivator to take care of one's health favored their adoption. Considering COASs as aimed toward ill people or perceiving them as complex are barriers to their use. DISCUSSION: Participants do not seem to have a privileged relationship with COAs. Reinforcing a sense of self-efficacy and ensuring that mobile devices and health apps elicit positive emotions in potential users is an essential step in facilitating the use of m-health from a health promotion perspective among individuals who are members of such virtual communities related to cancer.

Oral cavity squamous cell carcinomas in patients with no identified risk factors: Feeling like an outsider.

OBJECTIVES: Head and neck squamous cell carcinomas (HNSCCs) mainly affect smokers and drinkers. However, oral cavity squamous cell cancers (OCSCCs) are increasingly affecting patients with no identified risk factors (NIRFs). This study aimed at characterising their experience of the disease. METHODS: Qualitative study based on semi-structured interviews of 20 survivors of OCSCC with NIRF. Methods used in grounded theory approach were applied. RESULTS: Patients with NIRF had a similar experience to that of patients with risk factors regarding treatments. The absence of identified causes led to stigma and led the patients to distance themselves, both from the stereotypic HNSCC cancer patient and the identity as a cancer patient. Furthermore, having no identified risk factors seemed to reinforce the fear of recurrence. CONCLUSION: This study is the first to address key gaps in knowledge regarding patients with NIRF having survived OCSCC. Their experience is similar to that of patients with orphan diseases. Owing to confrontation with other patients and the repeated questions of caregivers about tobacco/alcohol consumption, these patients felt stigmatised during their treatment. OCSCC patients with NIRF may benefit from guidance and support on how to engage in prevention.

[Citizens who volunteer as participants for cancer research-results of the Seintinelles Barometer 2018]. / Ces citoyen(nes) qui se portent volontaires pour participer aux recherches dans le champ du cancer ­ résultats du Baromètre Seintinelles 2018.

INTRODUCTION: Health researchers often face difficulties related to participants' recruitment for their research. However, a new strategy emerges: offering patients-but also citizens who are not ill-the possibility to volunteer as participants to hasten research processes. The French platform "Seintinelles" aims to fulfill this goal and bring together citizens who volunteered to participate to cancer related research. The "Seintinelles Barometer" aims to describe these volunteers' profile. METHODS: The Seintinelles Barometer data were collected through a web-based auto-questionnaire proposed to the "Seintinelles" members from June 2017 to November 2018. RESULTS: The sample presents a high level of overrepresentation of women. Participants are characterized by a high level of education. About a third of the participants had suffered from cancer. Two profile of volunteers emerged: the « patients ¼ and the « supportive citizens ¼. DISCUSSION: The Seintinelles Barometer participants manifest a strong wish to be involved in cancer related research. Therefore, this platform seems to be a promising tool for the development of community-based research in the field of cancer.

[The Seintinelles: an innovative approach to promoting Community-Based Research and sustaining health democracy in oncology]. / Une démarche innovante pour favoriser la recherche communautaire et faire vivre la démocratie sanitaire en oncologie : les Seintinelles.

Community-based research drives innovation in major fields of public health, HIV/AIDS being the most emblematic example (Demange, Henry & Préau, 2012), and hepatitis. However, this type of research appears to be more difficult to develop in certain specific diseases, such as cancer (Shankand, Saïas & Friboulet, 2009). This article proposes various approaches concerning current citizen mobilization in relation to cancer research, including potential new levers to the development of participative and community-based research based on the recent creation of the Seintinelles platform, designed to federate researchers and citizens concerned by the problem of cancer. This reflection will be supported by more global issues concerning health democracy.