Barriers and enablers to implementing interprofessional primary care teams: a narrative review of the literature using the consolidated framework for implementation research.

BACKGROUND: Interprofessional primary care teams have been introduced across Canada to improve access (e.g., a regular primary care provider, timely access to care when needed) to and quality of primary care. However, the quality and speed of team implementation has not kept pace with increasing access issues. The aim of this research was to use an implementation framework to categorize and describe barriers and enablers to team implementation in primary care. METHODS: A narrative review that prioritized systematic reviews and evidence syntheses was conducted. A search using pre-defined terms was conducted using Ovid MEDLINE, and potentially relevant grey literature was identified through ad hoc Google searches and hand searching of health organization websites. The Consolidated Framework for Implementation Research (CFIR) was used to categorize barriers and enablers into five domains: (1) Features of Team Implementation; (2) Government, Health Authorities and Health Organizations; (3) Characteristics of the Team; (4) Characteristics of Team Members; and (5) Process of Implementation. RESULTS: Data were extracted from 19 of 435 articles that met inclusion/exclusion criteria. Most barriers and enablers were categorized into two domains of the CFIR: Characteristics of the Team and Government, Health Authorities, and Health Organizations. Key themes identified within the Characteristics of the Team domain were team-leadership, including designating a manager responsible for day-to-day activities and facilitating collaboration; clear governance structures, and technology supports and tools that facilitate information sharing and communication. Key themes within the Government, Health Authorities, and Health Organizations domain were professional remuneration plans, regulatory policy, and interprofessional education. Other key themes identified in the Features of Team Implementation included the importance of good data and research on the status of teams, as well as sufficient and stable funding models. Positive perspectives, flexibility, and feeling supported were identified in the Characteristics of Team Members domain. Within the Process of Implementation domain, shared leadership and human resources planning were discussed. CONCLUSIONS: Barriers and enablers to implementing interprofessional primary care teams using the CFIR were identified, which enables stakeholders and teams to tailor implementation of teams at the local level to impact the accessibility and quality of primary care.

Stakeholders' perceptions of a nurse-led telehealth case management intervention in primary care for patients with complex care needs: a qualitative descriptive study.

OBJECTIVE: With the onset of the COVID-19 pandemic, telehealth case management (TCM) was introduced in primary care for patients requiring care by distance. While not all healthcare needs can be addressed via telehealth, the use of information and communication technology to support healthcare delivery has the potential to contribute to the management of patients with chronic conditions and associated complex care needs. However, few qualitative studies have documented stakeholders' perceptions of TCM. This study aimed to describe patients', primary care providers' and clinic managers' perceptions of the use of a nurse-led TCM intervention for primary care patients with complex care needs. DESIGN: Qualitative descriptive study. SETTING: Three primary care clinics in three Canadian provinces. PARTICIPANTS: Patients with complex care needs (n=30), primary care providers (n=11) and clinic managers (n=2) participated in qualitative individual interviews and focus groups. INTERVENTION: TCM intervention was delivered by nurse case managers over a 6-month period. RESULTS: Participants' perceptions of the TCM intervention were summarised in three themes: (1) improved patient access, comfort and sense of reassurance; (2) trusting relationships and skilled nurse case managers; (3) activities more suitable for TCM. TCM was a generally accepted mode of primary care delivery, had many benefits for patients and providers and worked well for most activities that do not require physical assessment or treatment. Participants found TCM to be useful and a viable alternative to in-person care. CONCLUSIONS: TCM improves access to care and is successful when a relationship of trust between the nurse case manager and patient can develop over time. Healthcare policymakers and primary care providers should consider the benefits of TCM and promote this mode of delivery as a complement to in-person care for patients with complex care needs.

Changes in comprehensiveness of services delivered by Canadian family physicians: Analysis of population-based linked data in 4 provinces.

OBJECTIVE: To describe changes in the comprehensiveness of services delivered by family physicians across service settings and service areas in 4 Canadian provinces, to identify which settings and areas have changed the most, and to compare the magnitude of changes by physician characteristics. DESIGN: Descriptive analysis of province-wide, population-based billing data linked to population and physician registries. SETTING: British Columbia, Manitoba, Ontario, and Nova Scotia. PARTICIPANTS: Family physicians registered to practise in the 1999-2000 and 2017-2018 fiscal years. MAIN OUTCOME MEASURES: Comprehensiveness was measured across 7 service settings (home care, long-term care, emergency departments, hospitals, obstetric care, surgical assistance, anesthesiology) and in 7 service areas consistent with office-based practice (prenatal and postnatal care, Papanicolaou testing, mental health, substance use, cancer care, minor surgery, palliative home visits). The proportion of physicians with activity in each setting and area are reported and the average number of service settings and areas by physician characteristics is described (years in practice, sex, urban or rural practice setting, and location of medical degree training). RESULTS: Declines in comprehensiveness were observed across all provinces studied. Declines were greater for comprehensiveness of settings than for areas consistent with office-based practice. Changes were observed across all physician characteristics. On average across provinces, declines in the number of service settings and service areas were highest among physicians in practice 20 years or longer, male physicians, and physicians practising in urban areas. CONCLUSION: Declining comprehensiveness was observed across all physician characteristics, pointing to changes in the practice and policy contexts in which all family physicians work.

Implementation analysis of a case management intervention for people with complex care needs in primary care: a multiple case study across Canada.

BACKGROUND: Case management is one of the most frequently performed interventions to mitigate the negative effects of high healthcare use on patients, primary care providers and the healthcare system. Reviews have addressed factors influencing case management interventions (CMI) implementation and reported common themes related to the case manager role and activities, collaboration with other primary care providers, CMI training and relationships with the patients. However, the heterogeneity of the settings in which CMI have been implemented may impair the transferability of the findings. Moreover, the underlying factors influencing the first steps of CMI implementation need to be further assessed. This study aimed to evaluate facilitators and barriers of the first implementation steps of a CMI by primary care nurses for people with complex care needs who frequently use healthcare services. METHODS: A qualitative multiple case study was conducted including six primary care clinics across four provinces in Canada. In-depth interviews and focus groups with nurse case managers, health services managers, and other primary care providers were conducted. Field notes also formed part of the data. A mixed thematic analysis, deductive and inductive, was carried out. RESULTS: Leadership of the primary care providers and managers facilitated the first steps of the of CMI implementation, as did the experience and skills of the nurse case managers and capacity development within the teams. The time required to establish CMI was a barrier at the beginning of the CMI implementation. Most nurse case managers expressed apprehension about developing an "individualized services plan" with multiple health professionals and the patient. Clinic team meetings and a nurse case managers community of practice created opportunities to address primary care providers' concerns. Participants generally perceived the CMI as a comprehensive, adaptable, and organized approach to care, providing more resources and support for patients and better coordination in primary care. CONCLUSION: Results of this study will be useful for decision makers, care providers, patients and researchers who are considering the implementation of CMI in primary care. Providing knowledge about first steps of CMI implementation will also help inform policies and best practices.

Declining Comprehensiveness of Services Delivered by Canadian Family Physicians Is Not Driven by Early-Career Physicians.

We describe changes in the comprehensiveness of services delivered by family physicians in 4 Canadian provinces (British Columbia, Manitoba, Ontario, Nova Scotia) during the periods 1999-2000 and 2017-2018 and explore if changes differ by years in practice. We measured comprehensiveness using province-wide billing data across 7 settings (home, long-term care, emergency department, hospital, obstetrics, surgical assistance, anesthesiology) and 7 service areas (pre/postnatal care, Papanicolaou [Pap] testing, mental health, substance use, cancer care, minor surgery, palliative home visits). Comprehensiveness declined in all provinces, with greater changes in number of service settings than service areas. Decreases were no greater among new-to-practice physicians.

The impact of the COVID-19 pandemic on primary care physicians and nurses in Nova Scotia: a qualitative exploratory study.

BACKGROUND: The COVID-19 pandemic has brought immense disruption worldwide, dramatically altering the ways we live, work and learn on a day-to-day basis; however, few studies have investigated this from the perspective of primary care providers. In this study, we sought to explore the experiences of primary care providers in the province of Nova Scotia, with the intention of understanding the impact of the COVID-19 pandemic on primary care providers' ability to provide care, their information pathways, and the personal and professional impact of the pandemic. METHODS: We conducted an exploratory qualitative research study involving semistructured interviews conducted via Zoom videoconferencing or telephone with primary care providers (physicians, nurse practitioners and family practice nurses) who self-identified as working in primary health care in Nova Scotia from June 2020 to April 2021. We performed a thematic analysis involving coding and classifying data according to themes. Emergent themes were then interpreted by seeking commonalties, divergence, relationships and overarching patterns in the data. RESULTS: Twenty-four primary care providers were interviewed. Subsequent analysis identified 4 interrelated themes within the data: disruption to work-life balance, disruptions to "non-COVID-19" patient care, impact of provincial and centralized policies, and filtering and processing an influx of information. INTERPRETATION: Our findings showed that managing a crisis of this magnitude requires coordination and new ways of working, balancing professional and personal life, and adapting to already implemented changes (i.e., virtual care). A specific primary care pandemic response plan is essential to mitigate the impact of future health care crises.

Building Palliative Care Capacity for Generalist Providers in the Community: Results From the Capaciti Pilot Education Program.

Objective: Primary care providers play an important role in providing early palliative care, however they often lack practical supports to operationalize this approach in practice. CAPACITI is a virtual training program aimed at providing practical tips, strategies, and action plans to help primary care providers offer an early palliative approach to care. The CAPACITI pilot program consisted of 10 facilitated, monthly training sessions, covering identification and assessment, communication, and engaging caregivers and specialists. We present the findings of an evaluation of the pilot program. Method: We conducted a single cohort study of primary care providers who participated in CAPACITI. Study outcomes were the change in the percentage of caseload reported as requiring palliative care and improved confidence in competencies measured on a 20-item, study-created survey. Pre and post survey data were analyzed using paired t-tests. Results: Twenty-two teams representing 127 care providers (including 36 physicians and 28 Nurse Practitioners) completed CAPACITI. Paired comparisons showed a moderate improvement in confidence across the competencies covered (.6 to 1.3 mean improvement across items using seven-point scales, all P < .05). Pre-CAPACITI, clinician prescribers (N = 32) identified a mean of 1.2% of their caseload requiring a palliative approach to care, which increased to 1.6% post-program (P = .02). Said differently, the total group of paired clinician prescribers identified 338 patients as requiring palliative care in their caseloads at baseline vs 482 patients following the intervention, for an overall increase of 144 patients in their collective caseloads. Conclusion: CAPACITI improved self-assessed palliative care identification and provider confidence in core competencies. The program demonstrated potential for building palliative care capacity in primary care teams.

Changes over time in patient visits and continuity of care among graduating cohorts of family physicians in 4 Canadian provinces.

BACKGROUND: Lack of patient access to family physicians in Canada is a concern. The role of recent physician graduates in this problem of supply of primary care services has not been established. We sought to establish whether career stage or graduation cohort were related to family physician practice volume and continuity of care over time. METHODS: We conducted a retrospective cohort study of family physician practice from 1997/98 to 2017/18. We collected administrative health and physician claims data in British Columbia, Manitoba, Ontario and Nova Scotia. We included all physicians who registered with their respective provincial regulatory colleges as having a medical specialty of family practice or who had billed the provincial health insurance system for patient care as family physicians, or both. We used regression models to isolate the effects of 3-year categories of years in practice (at all career stages), time period and cohort on patient contacts and physician-level continuity of care. RESULTS: Between 1997/98 and 2017/18, the median number of patient contacts per provider per year fell by between 515 and 1736 contacts in the 4 provinces examined. Median contacts peaked at 27-29 years in practice in all provinces, and median physician-level continuity of care increased until 30 or more years in practice. We found no association between graduation cohort and patient contacts or physician-level continuity of care. INTERPRETATION: Recent cohorts of family physicians practise similarly to their predecessors in terms of practice volumes and continuity of care. Because family physicians of all career stages showed declining patient contacts, we suggest that system-wide solutions to recent challenges in the accessibility of primary care in Canada are needed.

Patient perspectives on primary care for multimorbidity: An integrative review.

INTRODUCTION: Improving healthcare for people with multiple chronic or ongoing conditions is receiving increased attention, particularly due to the growing number of people experiencing multimorbidity (MM) and concerns about the sustainability of the healthcare system. Primary care has been promoted as an important resource for supporting people with MM to live well with their conditions and to prevent unnecessary use of health care services. However, traditional primary care has been criticized for not centring the needs and preferences of people with MM themselves. Our aim was to conduct a review that centred on the perspective of people with MM in multiple ways, including having patient partners co-lead the design, conduct and reporting of findings, and focusing on literature that reported the perspective of people with MM, irrespective of it being experimental or nonexperimental. METHODS: We searched for published literature in CINAHL with Full Text (EBSCOhost) and MEDLINE All (Ovid). Findings from experimental and nonexperimental studies were integrated into collaboration with patient partners. RESULTS: Twenty-nine articles were included in the review. Findings are described in five categories: (1) Care that is tailored to my unique situation; (2) meaningful inclusion in the team; (3) a healthcare team that is ready and able to address my complex needs; (4) supportive relationships and (5) access when and where I need it. CONCLUSION: This review supports a reorientation of primary care systems to better reflect the experiences and perspectives of people with MM. This can be accomplished by involving patient partners in the design and evaluation of primary care services and incentivizing collaboration among health and social supports and services for people with MM. PATIENT OR PUBLIC CONTRIBUTION: Patient partners were involved in the design and conduct of this review, and in the preparation of the manuscript. Their involvement is further elucidated in the manuscript text.

Complex skills are required for new primary health care researchers: a training program responds.

BACKGROUND: Current dimensions of the primary health care research (PHC) context, including the need for contextualized research methods to address complex questions, and the co-creation of knowledge through partnerships with stakeholders - require PHC researchers to have a comprehensive set of skills for engaging effectively in high impact research. MAIN BODY: In 2002 we developed a unique program to respond to these needs - Transdisciplinary Understanding and Training on Research - Primary Health Care (TUTOR-PHC). The program's goals are to train a cadre of PHC researchers, clinicians, and decision makers in interdisciplinary research to aid them in tackling current and future challenges in PHC and in leading collaborative interdisciplinary research teams. Seven essential educational approaches employed by TUTOR-PHC are described, as well as the principles underlying the curriculum. This program is unique because of its pan-Canadian nature, longevity, and the multiplicity of disciplines represented. Program evaluation results indicate: 1) overall program experiences are very positive; 2) TUTOR-PHC increases trainee interdisciplinary research understanding and activity; and 3) this training assists in developing their interdisciplinary research careers. Taken together, the structure of the program, its content, educational approaches, and principles, represent a complex whole. This complexity parallels that of the PHC research context - a context that requires researchers who are able to respond to multiple challenges. CONCLUSION: We present this description of ways to teach and learn the advanced complex skills necessary for successful PHC researchers with a view to supporting the potential uptake of program components in other settings.

Patient and researcher experiences of patient engagement in primary care health care research: A participatory qualitative study.

BACKGROUND: Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. AIM: This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. METHODS: Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi-structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. RESULTS: Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two-way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. CONCLUSION: Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. PATIENT OR PUBLIC CONTRIBUTION: Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video.

Effect of Early Palliative Care on End-of-Life Health Care Costs: A Population-Based, Propensity Score-Matched Cohort Study.

PURPOSE: This study aimed to investigate the impact of early versus not-early palliative care among cancer decedents on end-of-life health care costs. METHODS: Using linked administrative databases, we created a retrospective cohort of cancer decedents between 2004 and 2014 in Ontario, Canada. We identified those who received early palliative care (palliative care service used in the hospital or community 12 to 6 months before death [exposure]). We used propensity score matching to identify a control group of not-early palliative care, hard matched on age, sex, cancer type, and stage at diagnosis. We examined differences in average health system costs (including hospital, emergency department, physician, and home care costs) between groups in the last month of life. RESULTS: We identified 144,306 cancer decedents, of which 37% received early palliative care. After matching, we created 36,238 pairs of decedents who received early and not-early (control) palliative care; there were balanced distributions of age, sex, cancer type (24% lung cancer), and stage (25% stage III and IV). Overall, 56.3% of early group versus 66.7% of control group used inpatient care in the last month (P < .001). Considering inpatient hospital costs in the last month of life, the early group used an average (±standard deviation) of $7,105 (±$10,710) versus the control group of $9,370 (±$13,685; P < .001). Overall average costs (±standard deviation) in the last month of life for patients in the early versus control group was $12,753 (±$10,868) versus $14,147 (±$14,288; P < .001). CONCLUSION: Receiving early palliative care reduced average health system costs in the last month of life, especially via avoided hospitalizations.

Planning, operationalizing, and evaluating patient partners' engagement in primary care research: a logic model.

Context. There is growing evidence supporting patients' engagement (PE) in primary care research to improve the quality, relevance, and uptake of research. However, guidance is still needed to plan and operationalize this engagement during the research process. Objective. To develop a logic model illustrating empirically the causal links between context, resources, activities, and expected outcomes of PE in an implementation research program in primary care. Study design. Instrumental case study. Setting. A research program (PriCARE) aiming to implement and evaluate a case management intervention (CMI) in primary care clinics across five provinces in Canada. Population studied. Research team members. Methods. Data collection. Participant observation and in-depth interviews (n=22) conducted by two independent research assistants with research team members: principal investigators (n=5); co-investigators (n=2); research coordinators and assistants (n=8); and patient partners (n=7). Analysis. Deductive thematic analysis using components of the logic model as coding categories. All data were coded using NVivo 12 software. Data were reduced and organized in a first logic model version. Team meetings helped to refine the logic model. The final version was validated by all research team members. Results. The logic model provides an empirical illustration of the relationship between context, resources, activities, and expected outcomes for PE. Mobilized resources (human, financial, organizational, and communicational) allow research team members to be involved in many activities related to PE: recruitment, training, and support of patient partners; development of a governance structure; participation in research activities; agreement on decision-making processes; training and support of clinicians; development of tools for patients' involvement in the CMI. These activities lead to the following benefits for health research: improved communication amongst all team members, results and knowledge translation; development of a PE culture; capacity building; democratization of health research; and for healthcare: improved implementation of the intervention; improved patient engagement in their care; better health outcomes and resource utilization; support of decision-makers and clinicians; and better practices. Conclusions. The logic model may be useful for the planning, operationalization and evaluation of PPE in primary care research programs.

Patient engagement works: Patient and researcher experiences of patient partnership in primary healthcare research.

Context: Health researchers are increasingly engaging patients and their families as partners in the research process, from inception to knowledge translation. The trend toward 'patient-oriented' research is encouraged by a growing view that studies which integrate the patient perspective will make better use of resources to produce more relevant evidence that can be more easily translated to clinical settings. While there is an emerging literature on best practices, challenges, and learnings related to patient engagement (PE), few studies consider the experiences of patient partners (PP) and researchers in the same project. This presentation will present PP and researcher experiences of PE, highlighting important similarities and differences and proposing recommendations. Objectives: To characterize PE experience from the perspective of researchers and PP working together on the same research program, PriCARE; to identify successes and challenges; to ascertain contributions of PE in health research. Study Design: Qualitative. Setting or Dataset: This study was conducted within the larger 5-province PriCARE study examining a nurse-led case management intervention for primary care patients with complex needs. Population studied: 22 members of the study team (7 PP, 8 coordinators, 2 co-investigators, 5 principal investigators). Methods: Data collection: In-depth interviews using guides co-created by researchers and PP covering topics such as PE-related training and knowledge, and reflections on PE processes and impact. Research assistants external to the PriCARE study conducted interviews, transcribed researcher interviews, and generated a summary of PP interviews. Analysis: Data were analyzed thematically using a coding framework that was co-developed with PP. Outcome Measures: Researcher and patient experiences of PE, PP contributions to health research. Results: All team members need PE training at the beginning of and throughout the research process. Evolving trust and flexibility helped team members to navigate different experiences and priorities. PP make integral contributions to study and instrument design, data analysis, and knowledge translation. Clear expectations about the degree and nature of PE and team members' roles are critical. Conclusions: Meaningful PE requires patient-researcher partnership and clear expectation setting at the outset and throughout the research process, and ongoing flexibility to adapt.

Comparing the Attainment of the Patient's Medical Home Model across Regions in Three Canadian Provinces: A Cross-Sectional Study.

BACKGROUND: The aim of this work was to show the feasibility of providing a comprehensive portrait of regional primary care performance. METHODS: The TRANSFORMATION study used a mixed-methods concurrent study design where we analyzed survey data and case studies. Data were collected in British Columbia, Ontario and Nova Scotia. Patient's Medical Home (PMH) pillar scores were created by calculating mean clinic-level scores across regions. Scores and qualitative themes were compared. RESULTS: Participation included 86 practices (n = 1,929 patients; n = 117 clinicians). Regions had differential attainment towards PMH orientation with respect to infrastructure; community adaptiveness and accountability; and patient and family partnered care. The lowest PMH attainment for all regions were observed in connected care; accessible care; measurement, continuous quality improvement and research; and training, education and continuing professional development. CONCLUSIONS: Comprehensive performance reporting that draws on multiple data sources in primary care is possible. Regional portraits highlighting many of the key pillars of a PMH approach to primary care show that despite differences in policy contexts, achieving a PMH remains elusive.

Quality of End-of-Life Cancer Care in Canada: A 12-Year Retrospective Analysis of Three Provinces' Administrative Health Care Data Evaluating Changes over Time.

This retrospective cohort study of cancer decedents during 2004-2015 examined end-of-life cancer care quality indicators (QIs) in the provinces of British Columbia (BC), Ontario, and Nova Scotia (NS). These included: emergency department use, in-patient hospitalization, intensive care unit admissions, physician house calls, home care visits, and death experienced in hospital. Ontario saw the greatest 12-year decrease in in-hospital deaths from 52.8% to 41.1%. Hospitalization rates within 30 days of death decreased in Ontario, increased in NS, and remained the same in BC. Ontario's usage of aggressive end-of-life measures changed very little, while BC increased their utilization rates. Supportive care use increased in both NS and Ontario. Those who were male or living in a lower income/smaller community (in Ontario) were associated with a decreased likelihood of receiving supportive care. Despite the shift in focus to providing hospice and home care services, approximately 50% of oncology patients are still dying in hospital and 11.7% of patients overall are subject to aggressive care measures that may be out of line with their desire for comfort care. Supportive care use is increasing, but providers must ensure that Canadians are connected to palliative services, as its utilization improves a wide variety of outcomes.

Trajectory of End-of-Life Pain and Other Physical Symptoms among Cancer Patients Receiving Home Care.

PURPOSE: To describe the trajectory of physical symptoms among cancer decedents who were receiving home care in the six months before death. PATIENTS AND METHODS: An observational cohort study of cancer decedents in Ontario, Canada, who received home care services between 2007 and 2014. To be included, decedents had to use at least one home care service in the last six months of life. Outcomes were the presence of pain and several other physical symptoms at each week before death. RESULTS: Our cohort included 27,295 cancer decedents (30,368 assessments). Forty-seven percent were female and 56% were age 75 years or older. The prevalence of all physical symptoms increased as one approached death, particularly in the last month of life. In the last weeks of life, 69% of patients reported having moderate-severe pain; however, only 20% reported that the pain was not controlled. Loss of appetite (63%), shortness of breath (59%), high health instability (50%), and self-reported poor health (44%) were also highly prevalent in the last week of life. Multivariate regression showed that caregiver distress, high health instability, social decline, uncontrolled pain, and signs of depression all worsened the odds of having a physical symptom in the last 3 months of life. CONCLUSION: In this large home care cancer cohort, trajectories of physical symptoms worsened close to death. While presence of moderate-severe pain was common, it was also reported as mostly controlled. Covariates, such as caregiver distress and social decline, were associated with having more physical symptoms at end of life.

End-of-life outcomes with or without early palliative care: a propensity score matched, population-based cancer cohort study.

OBJECTIVES: To investigate whether cancer decedents who received palliative care early (ie, >6 months before death) and not-early had different risk of using hospital care and supportive home care in the last month of life. DESIGN/SETTING: We identified a population-based cohort of cancer decedents between 2004 and 2014 in Ontario, Canada using linked administrative data. Analysis occurred between August 2017 to March 2019. PARTICIPANTS: We propensity-score matched decedents on receiving early or not-early palliative care using billing claims. We created two groups of matched pairs: one that had Resident Assessment Instrument (RAI) home care assessments in the exposure period (Yes-RAI group) and one that did not (No-RAI group) to control for confounders uniquely available in the assessment, such as health instability and pain. The outcomes were the absolute risk difference between matched pairs in receiving hospital care, supportive home care or hospital death. RESULTS: In the No-RAI group, we identified 36 238 pairs who received early and not-early palliative care. Those in the early palliative care group versus not-early group had a lower absolute risk difference of dying in hospital (-10.0%) and receiving hospital care (-10.4%) and a higher absolute risk difference of receiving supportive home care (23.3%). In the Yes-RAI group, we identified 3586 pairs, where results were similar in magnitude and direction. CONCLUSIONS: Cancer decedents who received palliative care earlier than 6 months before death compared with those who did not had a lower absolute risk difference of receiving hospital care and dying in hospital, and an increased absolute risk difference of receiving supportive home care in the last month of life.

Differences in Mode Preferences, Response Rates, and Mode Effect Between Automated Email and Phone Survey Systems for Patients of Primary Care Practices: Cross-Sectional Study.

BACKGROUND: A growing number of health care practices are adopting software systems that link with their existing electronic medical records to generate outgoing phone calls, emails, or text notifications to patients for appointment reminders or practice updates. While practices are adopting this software technology for service notifications to patients, its use for collection of patient-reported measures is still nascent. OBJECTIVE: This study assessed the mode preferences, response rates, and mode effect for a practice-based automated patient survey using phone and email modalities to patients of primary care practices. METHODS: This cross-sectional study analyzed responses and respondent demographics for a short, fully automated, telephone or email patient survey sent to individuals within 72 hours of a visit to their regular primary care practice. Each survey consisted of 5 questions drawn from a larger study's patient survey that all respondents completed in the waiting room at the time of their visit. Automated patient survey responses were linked to self-reported sociodemographic information provided on the waiting room survey including age, sex, reported income, and health status. RESULTS: A total of 871 patients from 87 primary care practices in British Columbia, Ontario, and Nova Scotia, Canada, agreed to the automated patient survey and 470 patients (45.2%) completed all 5 questions on the automated survey. Email administration of the follow-up survey was preferred over phone-based administration, except among patients aged 75 years and older (P<.001). Overall, response rates for those who selected an emailed survey (369/606, 60.9%) were higher (P<.001) than those who selected the phone survey (101/265, 38.1%). This held true irrespective of age, sex, or chronic disease status of individuals. Response rates were also higher for email (range 57.4% [58/101] to 66.3% [108/163]) compared with phone surveys (range 36% [23/64] to 43% [10/23]) for all income groups except the lowest income quintile, which had similar response rates (email: 29/63, 46%; phone: 23/50, 46%) for phone and email modes. We observed moderate (range 64.6% [62/96] to 78.8% [282/358]) agreement between waiting room survey responses and those obtained in the follow-up automated survey. However, overall agreement in responses was poor (range 45.3% [43/95] to 46.2% [43/93]) for 2 questions relating to care coordination. CONCLUSIONS: An automated practice-based patient experience survey achieved significantly different response rates between phone and email and increased response rates for email as income group rose. Potential mode effects for the different survey modalities may limit multimodal survey approaches. An automated minimal burden patient survey could facilitate the integration of patient-reported outcomes into care planning and service organization, supporting the move of our primary care practices toward a more responsive, patient-centered, continual learning system. However, practices must be attentive to furthering inequities in health care by underrepresenting the experience of certain groups in decision making based on the reach of different survey modes.

Trajectory of psychosocial symptoms among home care patients with cancer at end-of-life.

PURPOSE: Understanding the end-of-life psychosocial needs of cancer patients at home is a knowledge gap. This study describes the trajectory of psychosocial symptoms in the last 6 months of life among cancer decedents who were receiving home care. METHODS: Observational population-based cohort study of cancer decedents who were receiving home care services between 2007 and 2014. Decedents had to have at least one home care assessment in the last 6 months of life for inclusion. Outcomes were the presence of psychosocial symptoms (i.e., anxiety, loneliness, depression, social decline, caregiver distress, and cognitive decline) at each week before death. RESULTS: Our cohort included 27,295 unique cancer decedents (30,368 assessments), of which 58% died in hospital. Fifty-six percent were older than 74, and 47% were female. The prevalence of all symptoms increased approaching death, except loneliness. Social decline (48%-78%) was the most prevalent psychosocial symptom, though loneliness was reported in less than 10% of the cohort. Caregiver distress rose over time from 15%-27%. A third of the cohort reported issues with cognitive impairment. Multivariate regression showed that physical symptoms such as uncontrolled pain, impairment in independent activities of daily living, and a high level of health instability all significantly worsened the odds of having a psychosocial symptom in the last 3 months of life. CONCLUSION: In this large home care cancer cohort, trajectories of psychosocial symptoms worsened close to death. Physical symptoms, such as uncontrolled pain, were associated with having worse psychosocial symptoms at end of life.