Randomized Controlled Trial of Virtually Delivered Cognitive Behavioral Therapy for Insomnia to Address Perceived Cancer-Related Cognitive Impairment in Cancer Survivors.

PURPOSE: Comorbid insomnia and cancer-related cognitive impairment (CRCI) are experienced by up to 26% of individuals diagnosed with cancer. This study examined the efficacy and durability of cognitive behavioral therapy for insomnia (CBT-I) on perceived CRCI in cancer survivors. METHODS: Atlantic Canadian cancer survivors with insomnia and CRCI were randomly assigned to receive seven weekly virtual CBT-I sessions (n = 63) or placed in a waitlist control group (n = 69) to receive treatment after the waiting period. Participants completed assessments at baseline, 1 month (mid-treatment), and 2 months (post-treatment). Age- and education-adjusted mixed-effects models using intention-to-treat principles assessed change at post-treatment. Data from both groups were then pooled to assess the durability of effects at 3 and 6 months. A mediation analysis examined whether change in insomnia symptoms mediated the effect of CBT-I on cognitive outcomes. RESULTS: The mean age of the sample was 60 years, 77% were women, and breast cancer was the most common diagnosis (41%). The treatment group reported an 11.35-point reduction in insomnia severity, compared with a 2.67-point reduction in the waitlist control group (P < .001). The treatment group had a greater overall improvement than the waitlist control on perceived cognitive impairment (P < .001; d = 0.75), cognitive abilities (P < .001; d = 0.92), and impact on quality of life (P < .001; d = 1.01). These improvements were maintained at follow-up. Change in insomnia symptoms fully mediated the effect of CBT-I on subjective cognitive outcomes. CONCLUSION: Treating insomnia with CBT-I produces clinically meaningful and durable improvements in CRCI. There is an urgent need increase access to evidence-based treatment for insomnia in cancer centers and the community.

Virtual follow-up care among breast and prostate cancer patients during and beyond the COVID-19 pandemic: Association with distress.

BACKGROUND: The purpose of this study was to investigate associations between self-reported distress (anxiety/depression) and satisfaction with and desire for virtual follow-up (VFU) care among cancer patients during and beyond the COVID-19 pandemic. METHODS: Breast and prostate cancer patients receiving VFU at an urban cancer centre in Toronto, Canada completed an online survey on their sociodemographic, clinical, and technology, characteristics and experience with and views on VFU. EQ5D-5 L was used to assess distress. Statistical models adjusted for age, gender, education, income and Internet confidence. RESULTS: Of 352 participants, average age was 65 years, 48% were women,79% were within 5 years of treatment completion, 84% had college/university education and 74% were confident Internet users. Nearly, all (98%) had a virtual visit via phone and 22% had a virtual visit via video. The majority of patients (86%) were satisfied with VFU and 70% agreed that they would like VFU options after the COVID-19 pandemic. Participants who reported distress and who were not confident using the Internet for health purposes were significantly less likely to be satisfied with VFU (OR = 0.4; 95% CI: 0.2-0.8 and OR = 0.19; 95% CI: 0.09-0.38, respectively) and were less likely to desire VFU option after the COVID-19 pandemic (OR = 0.49; 95% CI: 0.30-0.82 and OR = 0.41; 95% CI: 0.23-0.70, respectively). CONCLUSIONS: The majority of respondents were satisfied with VFU and would like VFU options after the COVID-19 pandemic. Future research should determine how to optimize VFU options for cancer patients who are distressed and who are less confident using virtual care technology.

Navigation programs to support community-dwelling individuals with life-limiting illness: determinants of implementation.

BACKGROUND: As the Canadian population ages and the prevalence of chronic illnesses increases, delivering high-quality care to individuals with advanced life limiting illnesses becomes more challenging. Community-based navigation programs are a promising approach to address these challenges, but little is known about how these programs are successfully implemented to meet the needs of this population. This study sought to identify the key determinants that contribute to the successful implementation of these programs within Canada. METHODS: A qualitative study was undertaken to understand the implementation of eleven innovative, community-based navigation programs that aim to address the needs of individuals with life-limiting illnesses as they approach the end of life. The Consolidated Framework for Implementation Research (CFIR) guided the study design. Key informants (n = 23) within these programs took part in semi-structured interviews where they were asked to discuss how these programs are implemented. Data were analyzed using techniques employed in qualitative description. RESULTS: We identified key determinants of successful implementation within each CFIR domain. In the outer setting domain, participants emphasized the importance of filling gaps in care to meet client needs, developing strong relationships with clients and community-based organizations, and navigating relationships with healthcare providers. At the inner setting level, leadership support, staff compatibility, and available resources were identified as important factors. In terms of intervention characteristics, the ability to adapt was cited as a facilitator, whereas costs were identified as a barrier. For the characteristics of individuals, participants described the importance of having staff whose values align with the program, and who have the experience and skills necessary to work with complex clients. Finally, having strong champions and evaluation processes were highlighted as important process-oriented determinants of successful implementation. CONCLUSION: This study provides valuable insights into the determinants of successful implementation of community-based navigation programs in Canada. Understanding these determinants can guide the future development and integration of navigation programs to successfully meet the needs of those with life-limiting illnesses.

Barriers to and facilitators of successful implementation of a palliative approach to care in primary care practices: a mixed methods study.

OBJECTIVE: Integrating a palliative approach to care into primary care is an emerging evidence-based practice. Despite the evidence, this type of care has not been widely adopted into primary care settings. The objective of this study was to examine the barriers to and facilitators of successful implementation of a palliative approach to care in primary care practices by applying an implementation science framework. DESIGN: This convergent mixed methods study analysed semistructured interviews and expression of interest forms to evaluate the implementation of a protocol, linked to implementation strategies, for a palliative approach to care called Early Palliation through Integrated Care (EPIC) in three primary care practices. This study assessed barriers to and facilitators of implementation of EPIC and was guided by the Consolidated Framework for Implementation Research (CFIR). A framework analysis approach was used during the study to determine the applicability of CFIR constructs and domains. SETTING: Primary care practices in Canada. Interviews were conducted between September 2020 and November 2021. PARTICIPANTS: 10 individuals were interviewed, who were involved in implementing EPIC. Three individuals from each practice were reinterviewed to clarify emerging themes. RESULTS: Overall, there were implementation barriers at multiple levels that caused some practices to struggle. However, barriers were mitigated when practices had the following facilitators: (1) a high level of intra-practice collaboration, (2) established practices with organisational structures that enhanced communications, (3) effective leveraging of EPIC project supports to transition care, (4) perceptions that EPIC was an opportunity to make a long-term change in their approach to care as opposed to a limited term project and (5) strong practice champions. CONCLUSIONS: Future implementation work should consider assessing facilitators identified in our results to better gauge primary care pre-implementation readiness. In addition, providing primary care practices with support to help offset the additional work of implementing innovations and networking opportunities where they can share strategies may improve implementation success.

Family and emergency physicians' knowledge and attitudes toward organ donation and deemed consent: Human Organ and Tissue Donation Act in Nova Scotia.

OBJECTIVE: To understand Nova Scotian family physicians' and emergency department (ED) physicians' knowledge of, attitudes about, and experience with organ donation and transplantation in the context of the Human Organ and Tissue Donation Act (HOTDA). DESIGN: An electronic, self-administered survey. SETTING: Nova Scotia. PARTICIPANTS: All family physicians and ED physicians practising in Nova Scotia. MAIN OUTCOME MEASURES: Demographic characteristics, experience with organ donation and transplantation, knowledge about organ donation and HOTDA, attitudes toward organ donation and HOTDA, and opportunities for and barriers to the implementation of the HOTDA in clinical practice. Survey results were analyzed using descriptive statistics. RESULTS: Overall, 211 family physicians and 73 ED physicians responded to the survey. Most respondents had favourable attitudes around organ donation and most supported a deemed consent model. Nearly three-quarters of family physicians indicated they have a conversation around organ donation only if it is initiated by the patient. In the ED setting, the most common barriers to organ donation and deemed consent were lack of familiarity with the organ donation referral process, refusal of permission from families, and unknown wishes of the deceased. CONCLUSION: Family physicians and ED physicians had positive attitudes toward organ donation, including high support for a deemed consent model. However, specific knowledge gaps and training topics were identified that should be addressed within the context of this model.

Psychosocial interventions that target adult cancer survivors' reintegration into daily life after active cancer treatment: a scoping review.

OBJECTIVE: This review explored psychosocial interventions targeting adult cancer survivors' reintegration following active cancer treatment. This included the types of interventions tested and the tools used to measure reintegration. INTRODUCTION: Cancer survivors face lingering health issues following the completion of cancer treatment. Many cancer survivors still experience unmet psychosocial care needs despite receiving follow-up care. Further, many survivorship interventions do not specifically address outcomes important to survivors. A number of primary studies have identified reintegration as an outcome important to cancer survivors. Reintegration is a concept that focuses on returning to normal activities, routines, and social roles after cancer treatment; however, it is emerging and abstract. INCLUSION CRITERIA: Studies involving adult cancer survivors (18 years or older at diagnosis) of any cancer type or stage were included in this review. Studies with psychosocial interventions targeted at reintegrating the person into daily life after cancer treatment were included. Interventions addressing clinical depression or anxiety, and interventions treating solely physical needs that were largely medically focused were excluded. METHODS: A literature search was conducted in MEDLINE (Ovid), CINAHL (EBSCOhost), and Embase. Gray literature was searched using ProQuest Dissertations and Theses (ProQuest). Reference lists of included studies were searched. Studies were screened at the title/abstract and full-text levels, and 2 independent reviewers extracted data. Manuscripts in languages other than English were excluded due to feasibility (eg, cost, time of translations). Findings were summarized narratively and reported in tabular and diagrammatic format. RESULTS: The 3-step search strategy yielded 5617 citations. After duplicates were removed, the remaining 4378 citations were screened at the title and abstract level, then the remaining 306 citations were evaluated at the full-text level by 2 independent reviewers. Forty studies were included that evaluated psychosocial interventions among adult cancer survivors trying to reintegrate after active cancer treatment (qualitative n=23, mixed methods n=8, quantitative n=8, systematic review n=1). Included articles spanned 10 different countries/regions. Over half of all included articles (n=25) focused primarily on breast cancer survivors. Many studies (n=17) were conducted in primary care or community-based settings. The most common types of interventions were peer-support groups (n=14), follow-up education and support (n=14), exercise programs (n=6), and multidisciplinary/multicomponent programs (n=6). While the majority of included studies characterized the outcome qualitatively, 9 quantitative tools were also employed. CONCLUSIONS: This review identified 6 types of interventions to reintegrate survivors back into their daily lives following cancer treatment. An important thread across intervention types was a focus on personalization in the form of problem/goal identification. Given the number of qualitative studies, future research could include a qualitative systematic review and meta-aggregation. Quantitative tools may not be as effective for evaluating reintegration. More primary studies, including mixed methods studies, utilizing consistent measurement tools are required. Furthermore, this work provides a basis for future research to continue examining the complexity of implementing such interventions to successfully achieve reintegration. To do so, primary studies evaluating interventions from an implementation science and complex systems perspective would be useful. REVIEW REGISTRATION: Open Science Framework https://osf.io/r6bmx.

Early experiences of deemed consent legislation for organ donation in Nova Scotia: a qualitative study.

PURPOSE: In 2021, Nova Scotia, Canada, became the first jurisdiction in North America to adopt a deemed consent organ donation system under its revised Human Organ and Tissue Donation Act. This study sought to understand the early experiences of program staff and clinicians involved in implementing this legislation. METHODS: We conducted semistructured interviews with members of the provincial organ donation program and intensive care unit and emergency department clinicians (n = 14). Two investigators coded transcripts of interviews, then categorized the coded data into themes. RESULTS: We identified four key themes: 1) legislation has limited impact on daily practice; 2) legislation does not address existing barriers; 3) legislation aids conversations with donor families; and 4) legislation should provide more autonomy to patients and families, not less. CONCLUSION: Deemed consent legislation had limited impact on clinician's day-to-day practices, because of lack of infrastructure changes and infrequent donation opportunities. Nevertheless, participants felt the introduction of deemed consent in Nova Scotia eased conversations between families of potential donors and clinicians. These findings should be used to inform ongoing implementation of deemed consent and be considered by those contemplating similar legislative changes.

RéSUMé: OBJECTIF: En 2021, la Nouvelle-Écosse, au Canada, est devenue la première juridiction nord-américaine à adopter un système de don d'organes avec consentement présumé dans le cadre de sa version révisée de la Loi sur le don d'organes et de tissus humains. Cette étude visait à comprendre les premières expériences du personnel du programme et des clinicien·nes participant à la mise en œuvre de cette loi. MéTHODE: Nous avons mené des entrevues semi-structurées avec des membres du programme provincial de don d'organes, ainsi qu'avec des clinicien·nes de l'unité de soins intensifs et des services d'urgence (n = 14). Deux personnes de l'équipe de recherche ont codé les transcriptions des entrevues, puis ont classé les données codées en thèmes. RéSULTATS: Nous avons identifié quatre thèmes clés : 1) la législation a un impact limité sur la pratique quotidienne; 2) la législation ne s'attaque pas aux obstacles existants; 3) la législation facilite les conversations avec les familles des donneurs et donneuses; et 4) la législation devrait accorder plus d'autonomie aux patient·es et aux familles, et non moins. CONCLUSION: La législation sur la présomption de consentement a eu une incidence limitée sur les pratiques quotidiennes des cliniciennes et cliniciens, en raison du manque de changements à l'infrastructure et des possibilités de dons peu fréquentes. Néanmoins, les participant·es ont estimé que l'introduction du consentement présumé en Nouvelle-Écosse facilitait les conversations entre les familles des donneurs et donneuses potentiel·les et les clinicien·nes. Ces constatations devraient être utilisées pour éclairer la mise en œuvre continue de la présomption de consentement et être prises en compte par les autorités qui envisagent des modifications législatives similaires.

Exploring Men's Experiences with Follow-Up Care following Primary Treatment for Prostate Cancer in Atlantic Canada: A Qualitative Study.

Prostate cancer is a common and life-altering condition among Canadian men, yet little is known about how follow-up care is provided to those who have completed treatment. Despite improving survival rates, survivors experience ongoing needs and are often not provided with support to manage them. This study sought to investigate the post-treatment experiences and needs of prostate cancer survivors and to determine if and how these needs are being met. Using a qualitative description design, prostate cancer survivors who had completed treatment took part in semi-structured interviews. The interviews were recorded and analyzed thematically. The participants experienced varying levels of satisfaction with their follow-up care. While primary care providers played significant roles, continuity of care and specialist involvement varied. Most participants felt unprepared to manage the long-term effects of their cancer due to a lack of information and resources from their healthcare providers. Instead, participants turned to their peers for support. Ongoing physical and psychosocial needs went unmet and had significant impacts on their daily lives. Participants felt that support for these issues should be automatically integrated into their follow-up care. In summary, this study revealed the importance of integrated, patient-centered follow-up care for prostate cancer in Atlantic Canada.

How do navigation programs address the needs of those living in the community with advanced, life-limiting Illness? A realist evaluation of programs in Canada.

BACKGROUND: We sought to identify innovative navigation programs across Canadian jurisdictions that target their services to individuals affected by life-limiting illness and their families, and articulate the principal components of these programs that enable them to address the needs of their clients who are living in the community. METHODS: This realist evaluation used a two-phased approach. First, we conducted a horizon scan of innovative community-based navigation programs across Canadian jurisdictions to identify innovative community-based navigation programs that aim to address the needs of community-dwelling individuals affected by life-limiting illness. Second, we conducted semi-structured interviews with key informants from each of the selected programs. Informants included individuals responsible for managing and delivering the program and decision-makers with responsibility and/or oversight of the program. Analyses proceeded in an iterative manner, consistent with realist evaluation methods. This included iteratively developing and refining Context-Mechanism-Outcome (CMO) configurations, and developing the final program theory. RESULTS: Twenty-seven navigation programs were identified from the horizon scan. Using specific eligibility criteria, 11 programs were selected for subsequent interviews and in-depth examination. Twenty-three participants were interviewed from these programs, which operated in five Canadian provinces. The programs represented a mixture of community (non-profit or volunteer), research-initiated, and health system programs. The final program theory was articulated as: navigation programs can improve client outcomes if they have supported and empowered staff who have the time and flexibility to personalize care to the needs of their clients. CONCLUSIONS: The findings highlight key principles (contexts and mechanisms) that enable navigation programs to develop client relationships, personalize care to client needs, and improve client outcomes. These principles include staff (or volunteer) knowledge and experience to coordinate health and social services, having a point of contact after hours, and providing staff (and volunteers) time and flexibility to develop relationships and respond to individualized client needs. These findings may be used by healthcare organizations - outside of navigation programs - to work towards more person-centred care.

Connecting Health and Social Services for Patients with Complex Care Needs: A Pan-Canadian Comparative Policy Research Program.

Comprehensive primary healthcare for patients with complex care needs requires connections to other health services, social services and community supports. This descriptive comparative policy research program used publicly available documents and informant interviews to examine progress toward integrated comprehensive care through the lens of services needed by children and youth (0-25 years) and community-dwelling older adults (≥ 65 years) with high functional health needs. This article describes five projects. The following three findings emerged across all the projects: Canada indeed has multiple health systems; numerous integrated service delivery solutions are being trialled and most focus on medical services; and it is an ongoing challenge for ministries of health to engage physicians and physician associations in integration.

Toward Comprehensive Care Integration in Canada: Delphi Process Findings from Researchers, Clinicians, Patients and Decision Makers.

Introduction: From a larger study examining policy and program information on how Canadian provinces integrate care services, this study aimed to create "priority lists" of 10-15 services that are "absolutely needed" for care integration. Methodology: A diverse group of over 50 Canadian stakeholders participated in virtual consensus-building using the nominal group technique and a modified e-Delphi method to identify services that focused on two different groups: children and youth with high functional health needs and older adults in functional decline. Results: Three lists - containing services, processes and infrastructure elements - emerged: one per tracer condition group and a consolidated list. The latter identified the following five services as top priority for primary care integration: mental health and addictions services; home care; transition between urgent-emergency-acute care; medication reconciliation in community pharmacies; and respite care. No single social service was a clear priority, but those that mitigate material deprivation emerged within the top 10. Discussion: This humble pan-Canadian study shows that priority services in health and social services are neither well integrated nor connected to primary care. It also suggests that effective policy strategizing for primary care integration for those with complex care needs may require thinking beyond the logic of services - given their siloed organization.

Integrating Health and Social Care for Community-Dwelling Older Adults: A Description of 16 Canadian Programs.

This paper describes 16 Canadian programs designed to provide integrated primary care for older adults. Publicly available data were used to identify the "what" and the "how" of integration for each program. Most programs integrated with other healthcare or medical services (vs. social services). Mechanisms of integration varied; the most common mechanism was interprofessional teams. Only 25% of the programs formally engaged with autonomous physician-led primary care practices (where most Canadians receive their primary care). Findings suggest that integrated care is a priority across Canada but also highlight how far we have to go to achieve both vertical integration within the healthcare sector (primary, secondary and tertiary services) and horizontal integration across sectors (health and social).

Lack of Publicly Available Documentation Limits Spread of Integrated Care Innovations in Canada.

As healthcare in Canada is provincially operated, the program innovations in one jurisdiction may not be readily known in other jurisdictions. We examine the availability of implementation-specific data for 30 innovative Canadian programs designed to integrate health and social services for patients with complex needs. Using publicly available data and key informant interviews, we were able to populate only ∼50% of our data collection tool (on average). Formal program evaluations were available for only ∼30% of programs. Multiple barriers exist to the compilation and verification of healthcare programs' implementation data across Canada, limiting cross-jurisdictional learning and making a comparison of programs challenging.

Co-creation of a patient engagement strategy in cancer research funding.

BACKGROUND: As research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly looking to meaningfully incorporate patient partnership within funding processes and research requirements. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities. METHODS: A team of four patient partners with diverse cancer and personal experiences, and two researchers at different career stages agreed to participate as members of the strategy team. Ten staff members participated in supportive roles and to give context regarding different departments of CCS. The strategy was co-developed in 2021/2022 over a series of 7 workshops using facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was subjected to 3 rounds of validation. RESULTS: The co-creation and validation process resulted in a multi-faceted strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized engagement activities spanning the spectrum of research funding, and an evaluation framework. The experience of co-creating the strategy was captured using the Patient and Public Engagement Evaluation Tool and revealed a positive, supportive experience. CONCLUSIONS: Lessons learned included the value of an emphasis on a co-creation process from day one, the utility of facilitation techniques such as ground rules for dialogue, consensus building and Design Thinking, and the importance (and challenge) of designing for and incorporating equity when drafting the strategy. Future work will include implementation and evaluation of the strategy, as well as an examination of further ways to meaningfully and systematically engage diverse voices in research and research funding.

As researchers and healthcare providers see benefits of patient engagement in cancer research, research funders are also looking to engage with patients in their funding processes and research activities. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities. Four patient partners and two researchers were supported by ten CCS staff members to co-create the strategy in 2021/2022 over a series of 7 workshops. They used facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was then validated. Co-creation resulted in an easy-to-use strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized activities, and an evaluation framework. The experience of co-creating the strategy was captured using a well-regarded evaluation tool and revealed a positive, supportive experience.    Lessons learned during the process included making sure the co-creation process started on day one, the usefulness of facilitating the process, and the importance of considering issues of equity when drafting the strategy.

Provincial variation in colorectal cancer screening adherence in Canada; evidence from the Canadian Partnership for Tomorrow's Health.

Introduction: Although colorectal cancer (CRC) screening program is proven to reduce CRC incidence and mortality, understanding patterns and predictors of suboptimal adherence in screening program requires further investigation in Canada. Methods: We used self-reported data from five regional cohorts of the Canadian Partnership for Tomorrow's Health (CanPath), namely the BC Generations Project (BCGP), Alberta's Tomorrow Project (ATP), the Ontario Health Study (OHS), Quebec's CARTaGENE, and the Atlantic Partnership for Tomorrow's Health Study (Atlantic PATH). We stratified participants into the following four risk categories: 1) age 50-74 years, 2) family history in a first-degree relative, 3) personal history of chronic inflammatory bowel disease and/or polyps, and 4) co-existence of personal risk and family history. Multivariable logistic regression was used to identify predictors of adherence to the screening guidelines. Results: Adherence to CRC screening varied considerably between regions, ranging from 16.6% in CARTaGENE to 47.7% in OHS. Compared to the largest cohort OHS, the likelihood of non-adherence to CRC screening was significantly higher in BCGP (OR 1.15, 95% CI 1.11-1.19), the Atlantic PATH (OR 1.90, 95% CI 1.82-1.99) and CARTaGENE (OR 5.10, 95% CI 4.85-5.36). Low physical activity, current smoking, presence of personal risk, family history of CRC significantly reduced the likelihood of adherence to screening recommendations. Discussion/conclusion: Compared to the national target of ≥ 60% for participation in CRC screening, adherence to regular CRC screening was suboptimal in this cohort of Canadians and varied by region. Further efforts are needed to identify the specific barriers to screening adherence in different provinces and across risk categories.

Development of a consortium to examine organ donation legislative and system reforms: A report from the LEADDR consortium.

In April 2019, the province of Nova Scotia became the first jurisdiction in North America to pass legislation that incorporated deemed consent for deceased organ donation. The reform included many other important updates, including the hierarchy for consent, enabled donor and recipient contact, and mandatory referral of potential deceased donors. Additionally, system reforms were implemented to improve the deceased donation system in Nova Scotia. A collection of national colleagues identified the magnitude of the opportunity to develop a comprehensive strategy to measure and evaluate the impact of the legislative and system reforms. This article describes the successful development of a consortium from both national and provincial jurisdictions that included experts from a variety of backgrounds and clinical and administrative disciplines. In describing the creation of this group, we hope to offer our case example as a model for the evaluation of other health system reforms from a multidisciplinary perspective.

Views of leaders in under-represented and equity-denied communities on organ and tissue donation in Nova Scotia, Canada, in light of the Human Organ and Tissue Donation Act: a qualitative descriptive study.

OBJECTIVE: To explore the views of underserved and equity-denied communities in Nova Scotia, Canada, regarding organ and tissue donation and deemed consent legislation. DESIGN: A qualitative descriptive study was undertaken, employing both interviews and focus groups. SETTING: The province of Nova Scotia, Canada-the first jurisdiction in North America to implement deemed consent legislation for organ and tissue donation. PARTICIPANTS: Leaders of African Nova Scotian, Lesbian, Gay, Bisexual, Trans, Queer, Two Spirit (LGBTQ2S+) and Faith-based communities (Islam and Judaism) were invited to participate (n=11). Leaders were defined as persons responsible for community organisations or in other leadership roles, and were purposively recruited by the research team. RESULTS: Through thematic analysis, four main themes were identified: (1) alignment with personal values as well as religious beliefs and perspectives; (2) trust and relationships, which need to be acknowledged and addressed in the context of deemed consent legislation; (3) cultural competence, which is essential to the roll-out of the new legislation and (4) communication and information to combat misconceptions and misinformation, facilitate informed decision-making, and mitigate conflict within families. CONCLUSIONS: Leaders of African Nova Scotian, LGBTQ2S+ and Faith-based communities in Nova Scotia are highly supportive of deemed consent legislation. Despite this, many issues exemplify the need for cultural competence at all levels. These findings should inform ongoing implementation of the legislation and other jurisdictions considering a deemed consent approach to organ and tissue donation.

Implementation of a Web-Based Communication System for Primary Care Providers and Cancer Specialists.

Healthcare providers have reported challenges with coordinating care for patients with cancer. Digital technology tools have brought new possibilities for improving care coordination. A web- and text-based asynchronous system (eOncoNote) was implemented in Ottawa, Canada for cancer specialists and primary care providers (PCPs). This study aimed to examine PCPs' experiences of implementing eOncoNote and how access to the system influenced communication between PCPs and cancer specialists. As part of a larger study, we collected and analyzed system usage data and administered an end-of-discussion survey to understand the perceived value of using eOncoNote. eOncoNote data were analyzed for 76 shared patients (33 patients receiving treatment and 43 patients in the survivorship phase). Thirty-nine percent of the PCPs responded to the cancer specialist's initial eOncoNote message and nearly all of those sent only one message. Forty-five percent of the PCPs completed the survey. Most PCPs reported no additional benefits of using eOncoNote and emphasized the need for electronic medical record (EMR) integration. Over half of the PCPs indicated that eOncoNote could be a helpful service if they had questions about a patient. Future research should examine opportunities for EMR integration and whether additional interventions could support communication between PCPs and cancer specialists.

Factors Associated with the Breast Cancer Diagnostic Interval across Five Canadian Provinces: A CanIMPACT Retrospective Cohort Study.

The cancer diagnostic process can be protracted, and it is a time of great anxiety for patients. The objective of this study was to examine inter- and intra-provincial variation in diagnostic intervals and explore factors related to the variation. This was a multi-province retrospective cohort study using linked administrative health databases. All females with a diagnosis of histologically confirmed invasive breast cancer in British Columbia (2007-2010), Manitoba (2007-2011), Ontario (2007-2010), Nova Scotia (2007-2012), and Alberta (2004-2010) were included. The start of the diagnostic interval was determined using algorithms specific to whether the patient's cancer was detected through screening. We used multivariable quantile regression analyses to assess the association between demographic, clinical and healthcare utilization factors with the diagnostic interval outcome. We found significant inter- and intra-provincial variation in the breast cancer diagnostic interval and by screen-detection status; patients who presented symptomatically had longer intervals than screen-detected patients. Interprovincial diagnostic interval variation was 17 and 16 days for screen- and symptom-detected patients, respectively, at the median, and 14 and 41 days, respectively, at the 90th percentile. There was an association of longer diagnostic intervals with increasing comorbid disease in all provinces in non-screen-detected patients but not screen-detected. Longer intervals were observed across most provinces in screen-detected patients living in rural areas. Having a regular primary care provider was not associated with a shorter diagnostic interval. Our results highlight important findings regarding the length of the breast cancer diagnostic interval, its variation within and across provinces, and its association with comorbid disease and rurality. We conclude that diagnostic processes can be context specific, and more attention should be paid to developing tailored processes so that equitable access to a timely diagnosis can be achieved.

Nurse knowledge and attitudes towards organ donation and deemed consent: the Human Organ and Tissue Donation Act in Nova Scotia.

PURPOSE: In April 2019, the Human Organ and Tissue Donation Act (HOTDA) in Nova Scotia was modified to incorporate a deemed consent model. In this study, we sought to understand intensive care unit (ICU) and emergency department (ED) nurses' knowledge of and confidence around organ donation and transplantation, experiences with organ donors and recipients, attitudes toward organ donation and deemed consent, and perceived opportunities and barriers to a deemed consent approach in view of the legislative change. METHODS: We sent an electronic, self-administered survey to all ICU and ED nurses in Nova Scotia. The survey queried respondents on their knowledge of, experience with, and attitudes around organ donation and HOTDA, and opportunities and barriers to the implementation of HOTDA in clinical practice. Survey results were analyzed using descriptive statistics. RESULTS: One-hundred and ninety-four nurses responded to the survey. Nearly all (98%) supported organ donation, with 86% having signed an organ donor card to donate organs and/or tissues after death. A considerable majority (89%) also supported the new legislation. Nevertheless, a minority of respondents (13%) believed that deemed consent legislation would be considered a violation of the general principles of freedom and autonomy. The three most identified topics for ongoing training were coordination of the donation process (70%), clinical management of donors (70%), and family issues in decision-making (70%). CONCLUSION: Intensive care unit and ED nurses had positive attitudes toward organ donation, including deemed consent model. The findings should inform educational initiatives in Nova Scotia and beyond to optimize organ donation processes and outcomes.

RéSUMé: OBJECTIF: En avril 2019, la Loi sur le don d'organes et de tissus humains (Human Organ and Tissue Donation Act ­ HOTDA) de la Nouvelle-Écosse a été modifiée pour intégrer un modèle de consentement présumé. Dans cette étude, nous avons cherché à comprendre les connaissances et l'aisance du personnel infirmier des unités de soins intensifs (USI) et des services d'urgence en matière de don et de transplantation d'organes, leurs expériences avec les donneurs et les receveurs d'organes, leurs attitudes à l'égard du don d'organes et du consentement présumé, ainsi que les occasions et les obstacles perçus à une approche de consentement présumé compte tenu de la modification législative. MéTHODE: Nous avons envoyé un sondage électronique auto-administré à tout le personnel infirmier des soins intensifs et des urgences de Nouvelle-Écosse. Le sondage a interrogé les répondant.e.s sur leurs connaissances, leur expérience et leurs attitudes à l'égard du don d'organes et de la HOTDA, ainsi que sur les occasions et les obstacles à la mise en œuvre de l'HOTDA dans la pratique clinique. Les réponses au sondage ont été analysées à l'aide de statistiques descriptives. RéSULTATS: Cent-quatre-vingt-quatorze infirmières et infirmiers ont répondu au questionnaire. Presque toutes les personnes ayant répondu (98 %) appuient le don d'organes, 86 % ayant signé une carte de don d'organes pour donner des organes et/ou des tissus après leur décès. Une majorité considérable (89 %) soutient également la nouvelle législation. Néanmoins, une minorité de répondant.e.s (13 %) estime que la législation sur la présomption de consentement serait considérée comme une violation des principes généraux de liberté et d'autonomie. Les trois sujets de formation continue les plus fréquemment mentionnés étaient la coordination du processus de don (70 %), la prise en charge clinique des donneurs et donneuses (70 %) et les questions familiales dans la prise de décision (70 %). CONCLUSION: Le personnel infirmier des soins intensifs et des urgences avait une attitude positive à l'égard du don d'organes, y compris du modèle de consentement présumé. Ces résultats devraient éclairer les initiatives éducatives en Nouvelle-Écosse et ailleurs afin d'optimiser les processus et les issues du don d'organes.