Cécile Vialaron’s research while affiliated with University of Montreal Hospital Research Centre and other places

Objectives The purpose of this study is to describe and evaluate, in a real-life context, the support and communicate with families (SCF) team’s contribution to maintaining communication and supporting relatives when patients are at the end of their lives by mobilising the points of view of SCF team members, healthcare professionals, managers and the relatives themselves. Design An in-depth mixed-method case study (quantitative and qualitative). Individual interviews were conducted with members of the SCF team to assess the activities and areas for improvement and with co-managers of active COVID-19 units. Healthcare professionals and managers completed a questionnaire to assess the contribution made by the SCF team. Hospitalised patients’ relatives completed a questionnaire on their experience with the SCF team. Setting The study was conducted in a university teaching hospital in the province of Québec, Canada. Participants Members of the SCF team, healthcare professionals, managers and relatives of hospitalised patients. Results Between April and July 2020, 131 telephone communications with families and healthcare professionals, 43 support sessions for relatives of end-of-life patients and 35 therapeutic humanitarian visits were carried out by members of the SCF team. Team members felt that they had played an active role in humanising care. Fully 83.1% of the healthcare professionals and managers reported that the SCF team’s work had met the relatives’ needs, while 15.1% believed that the SCF team should be maintained after the pandemic. Fully 95% of the relatives appreciated receiving the telephone calls and visits, while 82% felt that the visits had positive effects on hospitalised patients. Conclusion The COVID-19 pandemic forced the introduction of a social innovation involving support for and communication with families. The intention of this innovation was to support the complexity of highly emotional situations experienced by families during the COVID-19 pandemic.

Background The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. Methods A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients’ perceptions of APs’ contributions and suggested improvements for accessing AP support. Results Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients’ experiences and highlighted areas for enhancing this service. Conclusion This study highlights, during the care trajectory of people affected by breast cancer, APs’ contribution to patients’ emotional well-being because they improve, in particular, the management of emotions and communication with health professionals.

Background Liver transplantation (LT) is indicated in patients with severe acute or chronic liver failure for which no other therapy is available. With the increasing number of LTs in recent years, liver centers worldwide must manage their patients according to their clinical situation and the expected waiting time for transplantation. The LT clinic at the Centre hospitalier de l’Université de Montréal (CHUM) is developing a new health care model across the entire continuum of pre-, peri-, and posttransplant care that features patient monitoring by an interdisciplinary team, including an accompanying patient; a digital platform to host a clinical plan; a learning program; and data collection from connected objects. Objective This study aims to (1) evaluate the outcomes following the implementation of a patient platform with connected devices and an accompanying patient, (2) identify implementation barriers and facilitators, (3) describe service outcomes in terms of health outcomes and the rates and nature of contact with the accompanying patient, (4) describe patient outcomes, and (5) assess the intervention’s cost-effectiveness. Methods Six types of participants will be included in the study: (1) patients who received transplants and reached 1 year after transplantation before September 2023 (historical cohort or control group), (2) patients who will receive an LT between December 2023 and November 2024 (prospective cohort/intervention group), (3) relatives of those patients, (4) accompanying patients who have received an LT and are interested in supporting patients who will receive an LT, (5) health care professionals, and (6) decision makers. To describe the study sample and collect data to achieve all the objectives, a series of validated questionnaires, accompanying patient logbooks, transcripts of interviews and focus groups, and clinical indicators will be collected throughout the study. Results In total, 5 (steering, education, clinical-technological, nurse prescription, and accompanying patient) working committees have been established for the study. Recruitment of patients is expected to start in November 2023. All questionnaires and technological platforms have been prepared, and the clinicians, stakeholders, and accompanying patient personnel have been recruited. Conclusions The implementation of this model in the trajectory of LT recipients at the CHUM may allow for better monitoring and health of patients undergoing transplantation, ultimately reducing the average length of hospital stay and promoting better use of medical resources. In the event of positive results, this model could be transposed to all transplant units at the CHUM and across Quebec (potentially affecting 888 patients per year) but could also be applied more widely to the monitoring of patients with other chronic diseases. The lessons learned from this project will be shared with decision makers and will serve as a model for other initiatives involving accompanying patients, connected objects, or digital platforms. International Registered Report Identifier (IRRID) PRR1-10.2196/54440

Objectives Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. Methods A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools. Results The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs’ activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. Conclusion Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

BACKGROUND Liver transplantation (LT) is indicated in patients with severe acute or chronic liver failure for which no other therapy is available. With the increased number of LTs in recent years, liver centers worldwide must manage their patients according to their clinical situation and the expected waiting time for transplants. The LT clinic at Centre Hospitalier de l’Université de Montréal (CHUM) is developing a new healthcare model across the entire continuum of pre-, per-, and post-transplant care that features patient monitoring by an interdisciplinary team including an accompanying patient (AP), a digital platform to host a clinical plan, a learning program, and data collection from connected objects (COs). OBJECTIVE (1) To evaluate the outcomes following the implementation of a patient platform with connected devices and an AP, (2) to identify implementation barriers and facilitators, (3) to describe service outcomes in terms of health outcomes and the rates and nature of contact with the AP, (4) to describe patient outcomes, and (5) to assess the intervention’s cost-effectiveness. METHODS Six types of participants will be included in the study: (a) patients who received transplants and reached one-year post-transplantation before September 2023 (historical cohort/control group); (b) patients who will receive an LT between December 2023 and November 2024 (prospective cohort/intervention group); (c) relatives of those patients; (d) APs who have received an LT and are interested in supporting patients who will receive an LT; (e) healthcare professionals; and (f) decision-makers. In order to describe the study sample and collect data to achieve all the objectives, a series of validated questionnaires, AP logbooks, transcripts of interviews and focus groups, and clinical indicators will be collected throughout the study. RESULTS Five working committees (steering, education, clinical-technological, nurse-prescriptions, and AP committees) have been established for the study. Recruitment of patients is expected to start in November 2023. All the questionnaires and technological platforms have been prepared and the clinicians, stakeholders, and AP personnel have been recruited. CONCLUSIONS The implementation of this model in the trajectory of LT recipients at CHUM may allow for better monitoring and health of transplant patients, and ultimately reduce the average length of hospital stay and promote better use of medical resources. In the event of positive results, this model could be transposed to all transplant units at CHUM and across Quebec (potentially affecting 888 patients/year), it but could also be applied more widely to the monitoring of patients with other chronic diseases. The lessons learned from this project will be shared with decision-makers and will serve as a model for other initiatives involving accompanying patients, COs or interactive platforms. CLINICALTRIAL

En 2015, une importante réforme du système de santé au Québec a notamment conduit à la création de postes dédiés à l’engagement des patients dans tous les établissements de santé. Le besoin de construire un espace d’échange dans ce domaine a conduit, en 2016, à la création de la communauté de pratique (CdP) québécoise sur l’expérience patient et le partenariat de soins et de services avec les usagers. Le public de la CdP est principalement constitué des responsables du « partenariat patient » dans les établissements et des patients partenaires impliqués. L’objectif de la CdP est de soutenir les démarches de partenariat par le partage entre les membres, mais aussi par des liens avec les parties prenantes extérieures à la CdP. La CdP organise quatre rencontres annuelles et anime six sous-groupes de travail. En mars 2020, le Québec a déclaré l’état d’urgence sanitaire en réponse à la pandémie de la Covid-19, entraînant la mise en place de nombreuses mesures pour limiter la propagation du virus. Ces mesures ont eu un impact très fort sur toute l’organisation du système de santé, notamment sur l’engagement des patients. La CdP a très vite réagi et a mis sur pied différentes activités : des webinaires, la création de nouveaux sous-groupes de travail et l’écriture d’un livre blanc. Ces activités en temps de pandémie ont été perçues par ses membres comme une source d’espoir, de motivation et d’inspiration à poursuivre leur engagement dans le partenariat de soins.

Background Centre hospitalier de l’Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. Methods An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. Results Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients’ ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). Conclusions This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment.

Objectives Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) in healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. Methods A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and two years afterwards (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools. Results The most significant limiting factors raised by APs to be integrated into clinical teams were: governance involvement, organizational boundaries, team members' availabilities, and confusion about the specific roles played by APs. Communication challenges were also raised, leading to inadequate promotion of the program to patients. The lack of time, space and compensation were also mentioned as limiting factors. Creating opportunities for team members to meet APs, building trust and teaching team members how APs’ activities are complementary to theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in the PAROLE-Onco program promotion to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. Conclusion Over time, APs were able to identify the best factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources, and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.