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.

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.

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.

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.

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.

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.

Socioeconomic inequalities in colorectal cancer incidence in Canada: trends over two decades.

PURPOSE: Colorectal cancer is the third most commonly diagnosed cancer in Canada. This study aimed to measure and examine trends in socioeconomic inequalities in the incidence of colorectal cancer in Canada. METHODS: This study is a time trend ecological study based on Canadian Census Division level data constructed from the Canadian Cancer Registry, Canadian Census of Population, and National Household Survey. We assessed trends in income and education inequalities in colorectal cancer incidence in Canada from 1992 to 2010. The age-standardized Concentration index ([Formula: see text]), which measures inequality across all socioeconomic groups, was used to quantify socioeconomic inequalities in colorectal cancer incidence in Canada. RESULTS: The average crude colorectal cancer incidence was found to be 61.52 per 100,000 population over the study period, with males having a higher incidence rate than females (males: 66.98; females: 56.25 per 100,000 population). The crude incidence increased over time and varied by province. The age-standardized C indicated a higher concentration of colorectal cancer incidence among lower income and less-educated neighborhoods in Canada. Income and education inequalities increased over time among males. CONCLUSION: The concentration of colorectal cancer incidence in low socioeconomic neighborhoods in Canada has implications for primary prevention and screening.

Prioritization of indicators of the quality of care provided to older adults with frailty by key stakeholders from five canadian provinces.

BACKGROUND: To meet the needs of older adults with frailty better, it is essential to understand which aspects of care are important from their perspective. We therefore sought to assess the importance of a set of quality indicators (QI) for monitoring outcomes in this population. METHODS: In this mixed-method study, key stakeholders completed a survey on the importance of 36 QIs, and then explained their ratings in a semi-structured interview. Stakeholders included older adults with frailty and their caregivers, healthcare providers (HCPs), and healthcare administrators or policy/decision makers (DMs). We conducted descriptive statistical analyses of quantitative variables, and deductive thematic qualitative analyses of interview transcripts. RESULTS: The 42 participants (8 older adults, 18 HCPs, and 16 DMs) rated six QIs as more important: increasing the patients' quality of life; increasing healthcare staff skills; decreasing patients' symptoms; decreasing family caregiver burden; increasing patients' satisfaction with care; and increasing family doctor continuity of care. CONCLUSIONS: Key stakeholders prioritized QIs that focus on outcomes targeted to patients and caregivers, whereas the current healthcare systems generally focus on processes of care. Quality improvement initiatives should therefore take better account of aspects of care that are important for older adults with frailty, such as having a chance to express their individual goals of care, receiving quality communications from HCPs, or monitoring symptoms that they might not spontaneously describe. Our results point to the need for patient-centred care that is oriented toward quality of life for older adults with frailty.

Postoperative mortality risk prediction that incorporates intraoperative vital signs: development and internal validation in a historical cohort.

PURPOSE: Accurate risk reassessment after surgery is crucial for postoperative planning for monitoring and disposition. Existing postoperative mortality risk prediction models using preoperative features do not incorporate intraoperative hemodynamic derangements that may alter risk stratification. Intraoperative vital signs may provide an objective and readily available prognostic resource. Our primary objective was to derive and internally validate a logistic regression (LR) model by adding intraoperative features to established preoperative predictors to predict 30-day postoperative mortality. METHODS: Following Research Ethics Board approval, we analyzed a historical cohort that included patients aged ≥ 45 undergoing noncardiac surgery with an overnight stay at two tertiary hospitals (2013 to 2017). Features included intraoperative vital signs (blood pressure, heart rate, end-tidal carbon dioxide partial pressure, oxygen saturation, and temperature) by threshold and duration of exposure, as well as patient, surgical, and anesthetic factors. The cohort was divided temporally 75:25 into derivation and validation sets. We constructed a multivariable LR model with 30-day all-cause mortality as the outcome and evaluated performance metrics. RESULTS: There were 30,619 patients in the cohort (mean [standard deviation] age, 66 [11] yr; 50.2% female; 2.0% mortality). In the validation set, the primary LR model showed a c-statistic of 0.893 (99% confidence interval [CI], 0.853 to 0.927), a Nagelkerke R-squared of 0.269, a scaled Brier score of 0.082, and an area under precision-recall curve of 0.158 (baseline 0.017 for an uninformative model). The addition of intraoperative vital signs to preoperative factors minimally improved discrimination and calibration. CONCLUSION: We derived and internally validated a model that incorporated vital signs to improve risk stratification after surgery. Preoperative factors were strongly predictive of mortality risk, and intraoperative predictors only minimally improved discrimination. External and prospective validations are needed. STUDY REGISTRATION: www. CLINICALTRIALS: gov (NCT04014010); registered on 10 July 2019.

RéSUMé: OBJECTIF: Une réévaluation précise des risques après la chirurgie est cruciale pour la planification postopératoire du monitorage et du congé. Les modèles existants de prédiction du risque de mortalité postopératoire utilisant des caractéristiques préopératoires n'intègrent pas les perturbations hémodynamiques peropératoires, lesquelles pourraient modifier la stratification du risque. Les signes vitaux peropératoires peuvent fournir une ressource pronostique objective et facilement disponible. Notre objectif principal était de dériver et de valider en interne un modèle de régression logistique (RL) en ajoutant des caractéristiques peropératoires aux prédicteurs préopératoires établis pour prédire la mortalité postopératoire à 30 jours. MéTHODE: À la suite de l'approbation du Comité d'éthique de la recherche, nous avons analysé une cohorte historique qui comprenait des patients âgés de ≥ 45 ans bénéficiant d'une chirurgie non cardiaque avec un séjour d'une nuit dans deux hôpitaux tertiaires (2013 à 2017). Les caractéristiques comprenaient les signes vitaux peropératoires (tension artérielle, fréquence cardiaque, pression télé-expiratoire en CO2, saturation en oxygène et température) par seuil et durée d'exposition, ainsi que des facteurs propres au patient, chirurgicaux et anesthésiques. La cohorte a été divisée temporellement 75:25 en ensembles de dérivation et de validation. Nous avons élaboré un modèle de RL multivariée avec la mortalité toutes causes confondues à 30 jours comme critère, et évalué les mesures de performance. RéSULTATS: Il y avait 30 619 patients dans la cohorte (âge moyen [écart type], 66 [11] ans; 50,2 % de femmes; 2,0 % de mortalité). Dans l'ensemble de validation, le modèle de RL primaire a montré une statistique c de 0,893 (intervalle de confiance [IC] à 99 %, 0,853 à 0,927), un R carré de Nagelkerke de 0,269, un score de Brier mis à l'échelle de 0,082 et une aire sous la courbe de rappel et précision de 0,158 (ligne de base 0,017 pour un modèle non informatif). L'ajout de signes vitaux peropératoires aux facteurs préopératoires a amélioré de façon minimale la discrimination et l'étalonnage. CONCLUSION: Nous avons dérivé et validé en interne un modèle qui incorporait des signes vitaux pour améliorer la stratification des risques après la chirurgie. Les facteurs préopératoires étaient fortement prédictifs du risque de mortalité, et les prédicteurs peropératoires n'ont que que très peu amélioré la discrimination. Une validation externe et prospective est nécessaire. ENREGISTREMENT DE L'éTUDE: www.ClinicalTrials.gov (NCT04014010); enregistrée le 10 juillet 2019.

The roles, activities and impacts of middle managers who function as knowledge brokers to improve care delivery and outcomes in healthcare organizations: a critical interpretive synthesis.

BACKGROUND: Middle Managers (MMs) are thought to play a pivotal role as knowledge brokers (KBs) in healthcare organizations. However, the role of MMs who function as KBs (MM KBs) in health care is under-studied. Research is needed that contributes to our understanding of how MMs broker knowledge in health care and what factors influence their KB efforts. METHODS: We used a critical interpretive synthesis (CIS) approach to review both qualitative and quantitative studies to develop an organizing framework of how MMs enact the KB role in health care. We used compass questions to create a search strategy and electronic searches were conducted in MEDLINE, CINAHL, Social Sciences Abstracts, ABI/INFORM, EMBASE, PubMed, PsycINFO, ERIC and the Cochrane Library. Searching, sampling, and data analysis was an iterative process, using constant comparison, to synthesize the results. RESULTS: We included 41 articles (38 empirical studies and 3 conceptual papers) that met the eligibility criteria. No existing review was found on this topic. A synthesis of the studies revealed 12 MM KB roles and 63 associated activities beyond existing roles hypothesized by extant theory, and we elaborate on two MM KB roles: 1) convincing others of the need for, and benefit of an innovation or evidence-based practice; and 2) functioning as a strategic influencer. We identified organizational and individual factors that may influence the efforts of MM KBs in healthcare organizations. Additionally, we found that the MM KB role was associated with enhanced provider knowledge, and skills, as well as improved organizational outcomes. CONCLUSION: Our findings suggest that MMs do enact KB roles in healthcare settings to implement innovations and practice change. Our organizing framework offers a novel conceptualization of MM KBs that advances understanding of the emerging KB role that MMs play in healthcare organizations. In addition to roles, this study contributes to the extant literature by revealing factors that may influence the efforts and impacts of MM KBs in healthcare organizations. Future studies are required to refine and strengthen this framework. TRIAL REGISTRATION: A protocol for this review was not registered.

Impacts of patient and family engagement in hospital planning and improvement: qualitative interviews with patient/family advisors and hospital staff.

BACKGROUND: Patient engagement (PE) in hospital planning and improvement is widespread, yet we lack evidence of its impact. We aimed to identify benefits and harms that could be used to assess the impact of hospital PE. METHODS: We interviewed hospital-affiliated persons involved in PE activities using a qualitative descriptive approach and inductive content analysis to derive themes. We interpreted themes by mapping to an existing framework of healthcare performance measures and reported themes with exemplar quotes. RESULTS: Participants included 38 patient/family advisors, PE managers and clinicians from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Benefits of PE activities included 9 impacts on the capacity of hospitals. PE activities involved patient/family advisors and clinicians/staff in developing and spreading new PE processes across hospital units or departments, and those involved became more adept and engaged. PE had beneficial effects on hospital structures/resources, clinician staff functions and processes, patient experience and patient outcomes. A total of 14 beneficial impacts of PE were identified across these domains. Few unintended or harmful impacts were identified: overextended patient/family advisors, patient/family advisor turnover and clinician frustration if PE slowed the pace of planning and improvement. CONCLUSIONS: The 23 self reported impacts were captured in a Framework of Impacts of Patient/Family Engagement on Hospital Planning and Improvement, which can be used by decision-makers to assess and allocate resources to hospital PE, and as the basis for ongoing research on the impacts of hospital PE and how to measure it.

A qualitative descriptive study of the role of nurse, allied health and physician middle managers who function as knowledge brokers in hospitals.

BACKGROUND: Knowledge brokers (KB) are increasingly being employed in health care to implement evidence-based practice and improve quality of care. Middle managers (MMs) may play a KB role in the implementation of an innovative or evidence-based practice in hospitals. However, how MMs' broker knowledge in hospitals and their impact on practice has not been adequately studied. AIM: To describe the role that MMs play in brokering knowledge in hospitals and their impact. METHOD: A qualitative descriptive study was conducted to generate a detailed description of MM experiences as KBs in hospitals. Data were collected using semi-structured telephone interviews with MMs in Ontario, Canada. Participants were purposively sampled to ensure variation in MM characteristics and a diverse representation of perspectives. Data were collected and analyzed concurrently using an inductive constant comparative approach. RESULTS: Twenty-one MMs from teaching and non-teaching hospitals participated. MMs described 10 roles and activities they enacted in hospitals that aligned with published KB roles. We found differences across professional groups and hospital type. Teaching status emerged as a potential factor relating to how MM KBs were able to function within hospitals. MMs reported enhanced patient, provider, and organizational outcomes. LINKING EVIDENCE TO ACTION: Middle managers may play an important KB role in the implementation of evidence-based practice in hospitals. An improved understanding of the KB roles that MMs play may be important in boosting evidence base practice in health care to ultimately improve quality of care. Administrators need a better understanding of the current KB roles and activities MMs enact as this may lead to more organizational structures to support MM KBs in health care.

Socioeconomic Gradients in Prostate Cancer Incidence Among Canadian Males: A Trend Analysis From 1992 to 2010.

INTRODUCTION: Understanding the effects of socioeconomic status on cancer incidence and their trends over time will help inform public health interventions for cancer control. This study sought to investigate trends in socioeconomic inequalities in prostate cancer incidence among Canadian males. METHODS: Using a census division level dataset (n = 280) constructed from the Canadian Cancer Registry, Canadian Census of Population (1992, 1996, 2001, 2006) and 2011 National Household Survey, we examined the effect of socioeconomic status on prostate cancer incidence among Canadian males between 1992 and 2010. The age-adjusted concentration index was used to quantify education/income-related inequalities in prostate cancer incidence. RESULTS: The crude prostate cancer incidence increased from 115 to 137 per 100 000 males in Canada from 1992 to 2010 with a peak in 2007. The rate increased significantly in all but three of four western provinces. The age-adjusted concentration index showed a higher concentration of prostate cancer diagnoses among males living in high-income neighbourhoods in Canada in particular from 1996 to 2005. In contrast, the index was higher among males living in less-educated neighbourhoods in the most recent study years (2006-2010). CONCLUSIONS: The concentration of new prostate cancer cases among high-income populations in Canada may be explained by the rise of opportunistic screening of asymptomatic males; however, this should be studied in further detail. Since we found a higher incidence rate of prostate cancer among less-educated males in Canada in recent years, risk-benefit investigation of primary prevention and opportunistic screening for less-educated males is advised.

Few guidelines offer recommendations on how to assess and manage anxiety and distress in children with cancer: a content analysis.

PURPOSE: To (1) describe and compare, across all eligible guidelines, recommendations that address any aspect of clinical assessment or management of anxiety and distress experienced by children and adolescents undergoing cancer treatment or hematopoietic stem cell transplantation (HSCT), and (2) assess guideline characteristics that influence identified recommendations. METHODS: We searched five databases for relevant guidelines and conducted a grey literature search. Guidelines had to refer to children 0-18 years old who were undergoing cancer treatment or HSCT, describe any aspect of clinical assessment or management of symptoms of anxiety and distress, and be publicly accessible and published in English on or after 2000. RESULTS: We identified 118 guidelines on pediatric cancer of which 13 mentioned clinical assessment or management of anxiety and distress. Six contained ≥ 1 recommendation addressing assessments of symptoms of which only two recommended specific screening instruments. Ten contained ≥ 1 recommendation addressing interventions for symptoms, of which six described specific interventions such as distraction and medication. Psychologists and nurses were the most common panel members and three guideline panels included a patient advocate. Only two guidelines received overall quality ratings > 80.0%. CONCLUSION: We identified no guidelines that were specific to clinical assessment or management of anxiety and distress among children and adolescents undergoing cancer treatment or HSCT, and thus, clinicians lack evidence-informed guidance on how to manage these specific symptoms. Future research should establish high-quality guidelines that offer recommendations specific to clinical assessment and management of anxiety and distress in pediatric oncology and HSCT.

Patient and family financial burden associated with cancer treatment in Canada: a national study.

GOAL: To determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada. METHODS: A self-administered questionnaire (P-SAFE v7.2.4) was completed by 901 patients with cancer from twenty cancer centres nationally (344 breast, 183 colorectal, 158 lung, 216 prostate) measuring direct and indirect costs related to cancer treatment and foregone care. Monthly self-reported out-of-pocket-costs (OOPCs) included drugs, homecare, homemaking, complementary/ alternative medicines, vitamins/supplements, family care, accommodations, devices, and "other" costs. Travel and parking costs were captured separately. Patients indicated if OOPC, travel, parking, and lost income were a financial burden. RESULTS: Mean 28-day OOPCs were CA$518 (US Purchase Price Parity [PPP] $416), plus CA$179 (US PPP $144) for travel and CA$84 (US PPP $67) for parking. Patients self-reporting high financial burden had total OOPCs (33%), of CA$961 (US PPP $772), while low-burden participants (66%) had OOPCs of CA$300 (US PPP $241). "Worst burden" respondents spent a mean of 50.7% of their monthly income on OOPCs (median 20.8%). Among the 29.4% who took time off work, patients averaged 18.0 days off. Among the 26.0% of patients whose caregivers took time off work, caregivers averaged 11.5 days off. Lastly, 41% of all patients had to reduce spending. Fifty-two per cent of those who reduced spending were families earning < CA$50,000/year. CONCLUSIONS: In our Canadian sample, high levels of financial burden exist for 33% of patients, and the severity of burden is higher for those with lower household incomes.

Approaches to optimize patient and family engagement in hospital planning and improvement: Qualitative interviews.

BACKGROUND: Patient engagement (PE) in health-care planning and improvement is a growing practice. We lack evidence-based guidance for PE, particularly in hospital settings. This study explored how to optimize PE in hospitals. METHODS: This study was based on qualitative interviews with individuals in various roles at hospitals with high PE capacity. We asked how patients were engaged, rationale for approaches chosen and solutions for key challenges. We identified themes using content analysis. RESULTS: Participants included 40 patient/family advisors, PE managers, clinicians and executives from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Hospitals most frequently employed collaboration (standing committees, project teams), followed by blended approaches (collaboration + consultation), and then consultation (surveys, interviews). Those using collaboration emphasized integrating perspectives into decisions; those using consultation emphasized capturing diverse perspectives. Strategies to support engagement included engaging diverse patients, prioritizing what benefits many, matching patients to projects, training patients and health-care workers, involving a critical volume of patients, requiring at least one patient for quorum, asking involved patients to review outputs, linking PE with the Board of Directors and championing PE by managers, staff and committee/team chairs. CONCLUSION: This research generated insight on concrete approaches and strategies that hospitals can use to optimize PE for planning and improvement. On-going research is needed to understand how to recruit diverse patients and best balance blended consultation/collaboration approaches. PATIENT OR PUBLIC CONTRIBUTION: Three patient research partners with hospital PE experience informed study objectives and interview questions.

How do inner and outer settings affect implementation of a community-based innovation for older adults with a serious illness: a qualitative study.

BACKGROUND: Implementing community-based innovations for older adults with serious illness, who are appropriate for a palliative approach to care, requires developing partnerships between health and community. Nav-CARE is an evidence-based innovation wherein trained volunteer navigators advocate, facilitate community connections, coordinate access to resources, and promote active engagement of older adults within their communities. Acknowledging the importance of partnerships between organizations, the aim of our study was to use the Consolidated Framework for Implementation Research (CFIR) to explore organizational (Inner Setting) and community or health system level (Outer Setting) barriers and facilitators to Nav-CARE implementation. METHODS: Guided by CFIR, qualitative individual and group interviews were conducted to examine the implementation of Nav-CARE in a Canadian community. Participants were individuals who delivered or managed Nav-CARE research, and stakeholders who provided services in the community. The Framework Method was used to analyse the data. Particular attention was paid to the host organization's external network and community context. RESULTS: Implementation was affected by several inter-related CFIR domains, making it difficult to meaningfully separate key findings by only inner and outer settings. Thus, findings were organized into themes informed by CFIR, that cut across other domains and incorporated inductive findings: intraorganizational perceptions of Nav-CARE; public and healthcare professionals' perceptions of palliative care; interorganizational partnerships and relationships; community and national-level factors that should have facilitated Nav-CARE implementation; and suggested changes to Nav-CARE. Themes demonstrated barriers to implementing Nav-CARE, such as poor organizational readiness for implementation, and public and health provider perceptions palliative care was synonymous with fast-approaching death. CONCLUSIONS: Implementation science frameworks and theories commonly focus on assessing implementation of innovations within facilities and changing behaviours of individuals within that organizational structure. Implementation frameworks need to be adapted to better assess Outer Setting factors that affect implementation of community-based programs. Although applying the CFIR helped uncover critical elements in the Inner and Outer Settings that affected implementation of Nav-CARE. Our study suggests that the CFIR could expand the Outer Setting to acknowledge and assess organizational structures and beliefs of individuals within organizations external to the host organization who impact successful implementation of community-based innovations.

Hospital capacity for patient engagement in planning and improving health services: a cross-sectional survey.

BACKGROUND: Patient engagement (PE) in planning or improving hospital facilities or services is one approach for improving healthcare delivery and outcomes. To provide evidence on hospital capacity needed to support PE, we described the attributes of hospital PE capacity associated with clinical quality measures. METHODS: We conducted a cross-sectional survey of general and specialty hospitals based on the Measuring Organizational Readiness for Patient Engagement framework. We derived a PE capacity index measure, and with Multiple Correspondence Analysis, assessed the association of PE capacity with hospital type, and rates of hand-washing, C. difficile infection rates and 30-day readmission. RESULTS: Respondents (91, 66.4%) included general: < 100 beds (48.4%), 100+ beds (27.5%), teaching hospitals (11.0%) and specialty (13.2%) hospitals. Most featured PE in multiple clinical and corporate departments. Most employed PE in a range of Planning (design/improve facilities 94.5%, develop strategic plans 87.9%), Evaluation/Quality Improvement (accreditation 91.2%, develop QI plans 90.1%) and Service Delivery activities (develop information/communication aids 92.3%). Hospitals enabled PE with multiple supports (median 12, range 0 to 25), most often: 76.9% strategic plan recognizes PE, 74.7% patient/family advisory council, and 69.2% pool of patient volunteers; and least often: 30.0% PE staff, 26.4% PE funding and 16.5% patient reimbursement or 3.3% compensation. Hospitals employed a range of less (inform, consult) and more (involve, partner) active modes of engagement. Two variables accounted for 29.6% of variance in hospital PE capacity index measure data: number of departments featuring PE and greater use of active engagement modes. PE capacity was not associated with general hospital type or clinical quality measures. CONCLUSIONS: Hospitals with fewer resources can establish favourable PE conditions by deploying PE widely and actively engaging patients. Healthcare policy-makers, hospital executives and PE managers can use these findings to allocate PE resources. Future research should explore how PE modes and methods impact clinical outcomes.

Organizational capacity for patient and family engagement in hospital planning and improvement: interviews with patient/family advisors, managers and clinicians.

BACKGROUND: Patient and family engagement (PE) in healthcare planning and improvement achieves beneficial outcomes and is widely advocated, but a lack of resources is a critical barrier. Little prior research studied how organizations support engagement specifically in hospitals. OBJECTIVE: We explored what constitutes hospital capacity for engagement. METHODS: We conducted descriptive qualitative interviews and complied with criteria for rigour and reporting in qualitative research. We interviewed patient/family advisors, engagement managers, clinicians and executives at hospitals with high engagement activity, asking them to describe essential resources or processes. We used content analysis and constant comparison to identify themes and corresponding quotes and interpreted findings by mapping themes to two existing frameworks of PE capacity not specific to hospitals. RESULTS: We interviewed 40 patient/family advisors, patient engagement managers, clinicians and corporate executives from nine hospitals (two < 100 beds, four 100 + beds, three teaching). Four over-arching themes about capacity considered essential included resources, training, organizational commitment and staff support. Views were similar across participant and hospital groups. Resources included funding and people dedicated to PE and technology to enable communication and collaboration. Training encompassed initial orientation and project-specific training for patient/family advisors and orientation for new staff and training for existing staff on how to engage with patient/family advisors. Organizational commitment included endorsement from the CEO and Board, commitment from staff and continuous evaluation and improvement. Staff support included words and actions that conveyed value for the role and input of patient/family advisors. The blended, non-hospital-specific framework captured all themes. Hospitals of all types varied in the availability of funding dedicated to PE. In particular, reimbursement of expenses and compensation for time and contributions were not provided to patient/family advisors. In addition to skilled engagement managers, the role of clinician or staff champions was viewed as essential. CONCLUSION: The findings build on prior research that largely focused on PE in individual clinical care or research or in primary care planning and improvement. The findings closely aligned with existing frameworks of organizational capacity for PE not specific to hospital settings, which suggests that hospitals could use the blended framework to plan, evaluate and improve their PE programs. Further research is needed to yield greater insight into how to promote and enable compensation for patient/family advisors and the role of clinician or staff champions in supporting PE.

Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis.

BACKGROUND: An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life. A realist synthesis was conducted to understand how multi-level contexts affect case management functions related to initiating end-of-life conversations, assessing patient and caregiver needs, and patient/family centred planning in primary care practices to improve outcomes. The synthesis also explored how these functions aligned with critical community resources identified by patients/families dealing with end-of-life. METHODS: A realist synthesis is theory driven and iterative, involving the investigation of proposed program theories of how particular contexts catalyze mechanisms (program resources and individual reactions to resources) to generate improved outcomes. To assess whether program theories were supported and plausible, two librarian-assisted and several researcher-initiated purposive searches of the literature were conducted, then extracted data were analyzed and synthesized. To assess relevancy, health system partners and family advisors informed the review process. RESULTS: Twenty-eight articles were identified as being relevant and evidence was consolidated into two final program theories: 1) Making end-of-life discussions comfortable, and 2) Creating plans that reflect needs and values. Theories were explored in depth to assess the effect of multi-level contexts on primary care practices implementing tools or frameworks, strategies for improving end-of-life communications, or facilitators that could improve advance care planning by primary care practitioners. CONCLUSIONS: Primary care practitioners' use of tools to assess patients/families' needs facilitated discussions and planning for end-of-life issues without specifically discussing death. Also, receiving training on how to better communicate increased practitioner confidence for initiating end-of-life discussions. Practitioner attitudes toward death and prior education or training in end-of-life care affected their ability to initiate end-of-life conversations and plan with patients/families. Recognizing and seizing opportunities when patients are aware of the need to plan for their end-of-life care, such as in contexts when patients experience transitions can increase readiness for end-of-life discussions and planning. Ultimately conversations and planning can improve patients/families' outcomes.