Social acceptability of psilocybin-assisted therapy for existential distress at the end of life: A population-based survey.

BACKGROUND: Internationally, there is a growing interest in the potential benefits of psilocybin-assisted therapy to treat existential distress at the end of life. However, the social acceptability of this therapy is not yet well known. AIM: This study assesses the social acceptability of the medical use of psilocybin to treat existential distress at the end of life. DESIGN: An online survey was conducted in Canada between November 23 and December 4, 2022. The questionnaire included items pertaining to perceptions, attitudes and concerns towards psilocybin-assisted therapy to treat existential distress at the end of life. PARTICIPANTS: The sample (n = 2800) was stratified by province, age and sex. Participants were adults from four provinces of Canada: Québec, Ontario, Alberta and British Columbia. RESULTS: Overall, 79.3% considered psilocybin-assisted therapy a reasonable medical choice for a patient suffering from existential distress at the end of life, 84.8% agreed that the public health system should cover the costs of the intervention and 63.3% would welcome the legalisation of psilocybin for medical purposes. Previous psilocybin use (p < 0.0001, for all dependent variables), exposure to palliative care (p < 0.05, for all dependent variables) and a progressive political orientation (p < 0.05, for all dependent variables) were associated with more favourable attitudes towards psilocybin-assisted therapy at the end of life. CONCLUSION: The social acceptability of psilocybin-assisted therapy for existential distress at the end of life is rather high in Canada. These findings may contribute to efforts to mobilise resources and improve access to this emerging therapy in palliative and end of life care settings.

Gaining a better understanding of the needs of rural cancer patients requiring in-home palliative and end-of-life care and nursing care and services.

Issue: Access to in-home palliative and end-of-life care (PELC), qualified professionals, and high-quality nursing care and services in rural areas is limited and unequal, thus leading to an increase in unmet needs across the care trajectory of cancer patients. Objectives and methodology: A qualitative descriptive study was carried out to gain a better understanding of the needs of rural cancer patients receiving in-home PELC and to describe the nursing care and services available to them. Results: Five rural cancer patients requiring PELC reported a variety of needs, especially those arising from limited information resources and multiple time- and energy-consuming back-and-forth trips to urban centres. Seven nurses who provide in-home care and services to rural inhabitants outlined the challenges they face in addressing these needs. These are related primarily to the long distances they are called upon to travel, the limited number of specialized professional resources available, transfers to emergency departments, the dearth of PELC training and the lack of a dedicated PELC team. Conclusion: These findings helped gain a better understanding of the specific needs of rural cancer patients requiring in-home PELC, as well as the challenges that nurses must confront to help their patients remain in their own homes.

Issues associated with a hereditary risk of cancer: Knowledge, attitudes and practices of nurses in oncology settings.

Documenting a patient's family history of cancer is useful in assessing their predisposition to some types of hereditary cancers. A group of nurses working with cancer patients were surveyed, by way of a questionnaire, to determine their level of knowledge about oncogenetics, describe various issues related to their capacity to identify, refer and support individuals with a hereditary risk of cancer, and explore their interest in continuing education on this topic. The findings show limited knowledge and a low sense of competence among the participating nurses, as well as a lack of access to university and continuing education programs in this field. Training focused on competency development would enhance their capacity to carry out an initial assessment of individuals who are potentially at risk for cancer and refer them to specialized resources.

Besoins des proches aidants qui accompagnent une personne en soins palliatifs et de fin de vie à domicile.

Le maintien à domicile d'une personne en soins palliatifs et de fin de vie (SPFV) dépend grandement de la présence quotidienne de proches aidants (PA) et de leur implication dans les soins. Or, les besoins des PA tout au long de la trajectoire d'accompagnement d'un proche en SPFV à domicile sont encore relativement méconnus. OBJECTIFS ET MÉTHODE: Cette étude qualitative descriptive s'intéresse au rôle des PA qui ont accompagné une personne recevant des SPFV à domicile dans le but de décrire leurs besoins tout au long de la trajectoire d'accompagnement. Ainsi, 20 PA ont participé à des entrevues semi-dirigées. RÉSULTATS ET DISCUSSION: L'étude met en lumière les besoins multiples des PA qui accompagnent un proche en SPFV à domicile. Les besoins informationnels, émotionnels et psychosociaux démontrent que les PA connaissent des changements dans leur rôle auprès de la personne malade. Les besoins spirituels ont été rapportés en termes de sens donné à l'expérience d'accompagnement. Enfin, les besoins pratiques mettent de l'avant l'importance d'avoir accès aux services de SPFV 24 h/24 et le caractère essentiel du soutien de l'infirmière. CONCLUSION: Les besoins des PA qui accompagnent une personne en SPFV à domicile sont peu satisfaits. Il importe d'en tenir compte dans la trajectoire de soins, parallèlement aux besoins de la personne malade, afin d'améliorer l'expérience d'accompagnement qui précède la période de deuil.

Needs of caregivers of patients receiving in-home palliative and end-of-life care.

Home support for patients receiving in-home palliative and end-of-life care (PELC) is greatly dependent on the daily presence of caregivers and their involvement in care delivery. However, the needs of caregivers throughout the care trajectory of a loved one receiving in-home PELC are still relatively unknown. OBJECTIVES AND METHODOLOGY: This descriptive qualitative study focuses on the role of caregivers who have cared for a person receiving in-home PELC with the goal of describing their needs throughout the care trajectory. As part of this process, 20 caregivers took part in semi-directed interviews. RESULTS AND DISCUSSION: This study sheds light on the multiple needs of caregivers of loved ones receiving in-home PELC. These informational, emotional, and psychosocial needs show that caregivers experience changes in their relationship with their loved one. Spiritual needs were expressed through the meaning ascribed to the home support experience. And the practical needs expressed by participants highlight the importance of round-the-clock access to PELC services and the essential importance of nursing support. CONCLUSION: The needs of caregivers of loved ones receiving in-home PELC are not being met to a satisfactory degree. It is important to consider these needs in the care trajectory, alongside the needs of the patients themselves, in order to improve the support experience leading up to the bereavement period.

Collaborative governance in the Quebec Cancer Network: a realist evaluation of emerging mechanisms of institutionalization, multi-level governance, and value creation using a longitudinal multiple case study design.

BACKGROUND: People living with and beyond cancer (PLC) receive various forms of specialty care at different locations and many interventions concurrently or over time. They are affected by the operation of professional and organizational silos. This results in undue delays in access, unmet needs, sub-optimal care experiences and clinical outcomes, and human and financial costs for PLCs and healthcare systems. National cancer control programs advocate organizing in a network to coordinate actions, solve fragmentation problems, and thus improve clinical outcomes and care experiences for every dollar invested. The variable outcomes of such networks and factors explaining them have been documented. Governance is the "missing link" for understanding outcomes. Governance refers to the coordination of collective action by a body in a position of authority in pursuit of a common goal. The Quebec Cancer Network (QCN) offers the opportunity to study in a natural environment how, why, by whom, for whom, and under what conditions collaborative governance contributes to practices that produce value-added outcomes for PLCs, healthcare providers, and the healthcare system. METHODS/DESIGN: The study design consists of a longitudinal case study, with multiple nested cases (4 local networks nested in the QCN), mobilizing qualitative and quantitative data and mixed data from various sources and collected using different methods, using the realist evaluation approach. Qualitative data will be used for a thematic analysis of collaborative governance. Quantitative data from validated questionnaires will be analyzed to measure relational coordination and teamwork, care experience, clinical outcomes, and health-related health-related quality of life, as well as a cost analysis of service utilization. Associations between context, governance mechanisms, and outcomes will be sought. Robust data will be produced to support decision-makers to guide network governance towards optimized clinical outcomes and the reduction of the economic toxicity of cancer for PLCs and health systems.

Assessment of the feasibility and acceptability, and pre-test of the utility of an individualized survivorship care plan (ISCP) for women with endometrial cancers during the transition of the end of active treatment to cancer survivorship.

The transition from the end of active treatment to survivorship holds many challenges for women with endometrial cancer (WEC) and for the organization of health services. The feasibility and acceptability of implementing an individualized survivorship care plan (ISCP) at the end of treatment are documented as potential solutions. The utility of an ISCP on three indicators (SUNS, FCRI, and HeiQ) was pre-tested by comparing two groups of WEC (control and exposed to the ISCP). The WEC exposed to the ISCP had fewer needs, a lesser intensity of fear of cancer recurrence, and better health-related empowerment skills three months after the end of treatment, as compared to the control group. Obstacles of time, resources, and organization were raised. BACKGROUND: The transition from the end of active treatment to cancer survivorship is a time of imbalance and turbulence for women with endometrial cancer (WEC). The transition to survivorship continues to be uncoordinated and the need for information about the side effects to watch for and the health risks is unmet. The implementation of an individualized survivorship care plan (ISCP) is suggested as an information and communication tool that could be a solution for facilitating the transition from the end of treatment to the beginning of survivorship. RESEARCH OBJECTIVE AND METHOD: To assess and document the feasibility and acceptability of implementing an ISCP, qualitative data were gathered from WEC, oncology nurse navigators (ONN), and family doctors. A pre-experimental research design with a non-equivalent control group, an end of treatment (T0), and a three-month follow-up (T1) allowed us to pre-test its utility according to three indicators: (1) overall needs (SUNS); (2) fear of cancer recurrence (FCRI); and (3) empowerment (HeiQ) according to exposure to ISCP (control versus exposed) and to the time of measurement in the transition period (T0 versus T1). RESULTS: The sample was made up of 18 WEC for the group exposed to the ISCP and 13 WEC for the control group, 12 general practitioners, and two ONN. After ONN training, the ISCP completion time varied between 60 and 75 minutes, and the meeting for providing the ISCP lasted 45-60 minutes. The WEC supported the idea that meetings with the ONN and the ISCP were useful in meeting their needs for information and support. The family doctors supported its relevancy in favouring follow-up and better subsequent healthcare management, as well as in reassuring patients and avoiding a sense of abandonment at the end of treatment. Comparing the group exposed to the ISCP versus the control group, fewer reported needs can be observed: information: 35% versus 74%, p = .030; professional and financial: 6% versus 19%, p = .057; access and continuity: 9% versus 25%, p = .078; support: 18% versus 50%, p = .007, emotional: 13% versus 28%, p = .044). Moreover, at T1, empowerment according to the skill and technique acquisition sub-scale shows a higher trend (M = 75.00 (10.21) versus M = 64.06 (10.67), p = .097). The level of fear of recurrence remains above the clinically significant score of 13 for both groups at the two times of measurement. DISCUSSION: The ISCP is an informational tool that seeks to facilitate care-related communication and coordination between specialized and primary care. It is intended to facilitate the transition from the end of treatment to survivorship and survivors' commitment to health-related empowerment behaviours. The feasibility and utility of implementing an ISCP are supported if additional professional, organizational, and financial resources are specified and mobilized.

Development and validation of an individualized survivorship care plan (ISCP) for women with endometrial cancer during the transition of the end of active treatment to the cancer survivorship.

Many cancer survivors finish their treatment without knowing the associated health risks and few are prepared to handle their health needs in the survivorship phase. Moreover, practical guides for follow- up care are not available and survivors' psychological and social needs often go unassessed. In this article, we propose the development and implementation of an individualized follow-up care plan (IFCP) after active treatment for women with endometrial cancers (WEC) to meet their needs for information and to facilitate the transition to the survivorship phase. BACKGROUND: The after-treatment phase is a distinct phase that is still neglected in the oncological continuum of care. It is the transition between two phases in the care trajectory-treatment and survivorship-that gives rise to many challenges for survivors, care providers and the healthcare system alike. RESEARCH GOAL: Aiming to facilitate the transition between the end of active treatment and the cancer survivorship phases, we pursued two objectives: 1) Develop an individualized follow-up care plan (IFCP) based on both the literature and the perspective of WEC, healthcare professionals involved with the target clientele and oncology outreach managers, and 2) Have this IFCP validated by an interdisciplinary team. METHODOLOGY: For the first objective, WEC-related needs at the end of active treatment (immediate end, three months and six months), as well as the perceptions of health professionals and oncology outreach managers were gathered by interview and group discussion on the benefit of an IFCP, its content and desired format. A content analysis of the interview data was performed using the Miles and Huberman approach (2003). For the second objective, an iterative consultation process with health professionals allowed for validation by consensus. These two objectives are the first qualitative phase of a mixed-methods sequential exploratory design that will make the development of an IFCP possible. In the second phase, we conducted a feasibility study of the implementation of the IFCP during the end of active treatment transition to cancer survivorship transition. This will be the subject of a second article. RESULTS: The interviews (n=47) revealed WECs' lack of preparation for the transition from the end of active treatment to the cancer survivorship. The following needs were specified: information (80%), emotional support, particularly to overcome their fear of recurrence (75%), the management of physical symptoms (45%), and support for adapting to change (45%). The data gathered from healthcare professionals and outreach managers support the utility of an IFCP in meeting these needs. The iterative validation process by the interdisciplinary team made consensus on the format and content possible. The final version of the IFCP is seen as a tool for information and communication in the survivorship phase. Some obstacles to its transfer to clinical practice are reported. CONCLUSION: This study presents the entire process that led to the development of an IFCP that integrates both the needs of endometrial cancer survivors and the opinions of healthcare professionals and the oncology outreach managers organizing this care. Indications on how the IFCP could be implemented within this organization are also formulated.

Gaining a better understanding of the support function of oncology nurse navigators from their own perspective and that of people living with cancer: Part 2.

Individuals living with cancer have a wide range of needs throughout the disease trajectory. To better meet them, the PQLC [French acronym of the Quebec Cancer Control Program] implemented the oncology nurse navigator (ONN) role. A first article presented the nature of the needs of individuals living with cancer and of the support provided by ONNs. This second article aims at gaining a better understanding of the ONN support function from the ONNs' own perspective and to complete an exploratory description of their support interventions for individuals living with cancer and their loved ones throughout the care trajectory. The sample includes ten ONNs. They reported doing support interventions for all the various types of needs, especially in the informational (44%) and practical areas such as coordinating appointments for exams, practitioners and various services (35%). The results also suggest that a needs assessment is a prerequisite to intervention. Lastly, all participants underscored the importance of the helping relation and trusting relationship to clarify their support function. These results are consistent with the findings of several recent articles on the psychosocial role of oncology nurses.

Gaining a better understanding of the support function of oncology nurse navigators from their own perspective and that of people living with cancer: Part 1.

Individuals living with cancer have a wide range of needs throughout the disease trajectory. To better meet them, the Quebec Cancer Control Program (PQLC) implemented the oncology nurse navigator role. While this practitioner has already been integrated into the majority of oncology teams, the role still lacks precision when it comes to its functions within care teams. The support function that deals indiscriminately with "the full spectrum of care and services" consolidated under the larger constructs of adaptation and rehabilitation provided to the individual with cancer and their loved ones requires professional skills and organizational resources, which would improve with clarifying. The goal of this study is to better understand the oncology nurse navigator (ONN) support function, first from the perspective of individuals living with cancer and, second, from the perspective of ONNs themselves. The first objective, detailed in this first part of two, is to explore, from the perspective of people living with cancer, the nature of their needs and support provided by the ONN along the disease trajectory. In all, five individuals living with cancer and provided with an ONN were recruited. The participants expressed support needs at all levels regarding the ONN particularly in the emotional (56%) and informational areas. Moreover results suggest that symptom management (physical area) and all-around coordination (care interventions, appointments, exams, practitioners) in the practical area are paramount throughout the care trajectory.

Health professionals' perspectives regarding polypharmacy in older patients with cancer: A mixed-design exploratory study.

OBJECTIVES: Older patients with cancer often present with multimorbidity and polypharmacy, but there is little information on the challenges these conditions raise. We aimed to describe health professionals' practice, perceptions and needs related to polypharmacy for older adults receiving cancer treatment. MATERIALS AND METHODS: We performed a mixed-design exploratory study. Phase 1 involved an online survey of 16 Likert-scale or multiple choices questions regarding polypharmacy and medication management for older patients with cancer. Phase 2 comprised two focus groups with oncology health professionals to learn about their perceptions and needs regarding medication management during cancer treatments. RESULTS: A total of 54 health professionals responded to the survey (nurses = 25; pharmacists = 21; physicians = 6; other = 2). Half of them always or often felt that medication is a significant burden for patients but only a quarter always or often addressed the possibility of stopping medications. Ten health professionals participated in the focus groups. The normalization of the quantity of medications used in relation with aging, as well as the lack of older adults' knowledge about their medication were reported. Other barriers to deprescribing included lack of time and expertise, and issues with communication between health professionals. CONCLUSION: Although polypharmacy is a concern for many health professionals, most do not discuss deprescribing with older patients with cancer. Normalization of medication use, both by older adults and health professionals, stands as a significant barrier to critical medication review. The development of clinical tools could facilitate identification of circumstances where deprescribing is appropriate and help reduce associated barriers.

Cross-Cultural Adaptation and Validation of a French Version of the Genetic Counseling Satisfaction Scale (GCSS) as an Outcome Measure of Genetic Counseling for Hereditary Breast and Ovarian Cancer.

(1) Background: The Genetic Counseling Satisfaction Scale (GCSS) is a widely used tool to evaluate patient satisfaction. To our knowledge, a validated French-language version of this tool is not yet available. This article reports on the cross-cultural adaptation and validation of a French version of the Genetic Counseling Satisfaction Scale (GCSS) to evaluate genetic counseling services for patient consultation in hereditary breast and ovarian cancer (HBOC). (2) Methods: The scale was culturally adapted following guidelines from Beaton et al. (2000). Cognitive interviews were conducted to ensure items were understood according to the intended meaning. The internal consistency, floor and ceiling effects, and testing of group differences were assessed using a sample of 172 patients who attended a pretest group genetic counseling session. (3) Results: Participants understood all items according to the intended meaning. The internal consistency was high for the total scale (0.90) and for the corrected item-to-total correlations (varying between 0.62 and 0.78). No floor or ceiling effects were observed. Group difference analyses generally followed expectations. (4) Conclusion: This process generated a French version of the GCSS that is clearly understood by patients, and has psychometric properties adequately in line those reported for its original English version.

A Collaborative Model to Implement Flexible, Accessible and Efficient Oncogenetic Services for Hereditary Breast and Ovarian Cancer: The C-MOnGene Study.

Medical genetic services are facing an unprecedented demand for counseling and testing for hereditary breast and ovarian cancer (HBOC) in a context of limited resources. To help resolve this issue, a collaborative oncogenetic model was recently developed and implemented at the CHU de Québec-Université Laval; Quebec; Canada. Here, we present the protocol of the C-MOnGene (Collaborative Model in OncoGenetics) study, funded to examine the context in which the model was implemented and document the lessons that can be learned to optimize the delivery of oncogenetic services. Within three years of implementation, the model allowed researchers to double the annual number of patients seen in genetic counseling. The average number of days between genetic counseling and disclosure of test results significantly decreased. Group counseling sessions improved participants' understanding of breast cancer risk and increased knowledge of breast cancer and genetics and a large majority of them reported to be overwhelmingly satisfied with the process. These quality and performance indicators suggest this oncogenetic model offers a flexible, patient-centered and efficient genetic counseling and testing for HBOC. By identifying the critical facilitating factors and barriers, our study will provide an evidence base for organizations interested in transitioning to an oncogenetic model integrated into oncology care; including teams that are not specialized but are trained in genetics.