Development of a patient-reported outcome measure of digital health literacy for chronic patients: results of a French international online Delphi study.

BACKGROUND: A psychometrically robust patient-reported outcome measure (PROM) to assess digital health literacy for chronic patients is needed in the context of digital health. We defined measurement constructs for a new PROM in previous studies using a systematic review, a qualitative description of constructs from patients, health professionals and an item pool identification process. This study aimed to evaluate the content validity of a digital health literacy PROM for chronic patients using an e-Delphi technique. METHODS: An international three-round online Delphi (e-Delphi) study was conducted among a francophone expert panel gathering academics, clinicians and patient partners. These experts rated the relevance, improvability, and self-ratability of each construct (n = 5) and items (n = 14) of the preliminary version of the PROM on a 5-point Likert scale. Consensus attainment was defined as strong if ≥ 70% panelists agree or strongly agree. A qualitative analysis of comments was carried out to describe personal coping strategies in healthcare expressed by the panel. Qualitative results were presented using a conceptually clustered matrix. RESULTS: Thirty-four experts completed the study (with 10% attrition at the second round and 5% at the third round). The panel included mostly nurses working in clinical practice and academics from nursing science, medicine, public health background and patient partners. Five items were excluded, and one question was added during the consensus attainment process. Qualitative comments describing the panel view of coping strategies in healthcare were analysed. Results showed two important themes that underpin most of personal coping strategies related to using information and communications technologies: 1) questionable patient capacity to assess digital health literacy, 2) digital devices as a factor influencing patient and care. CONCLUSION: Consensus was reached on the relevance, improvability, and self-ratability of 5 constructs and 11 items for a digital health literacy PROM. Evaluation of e-health programs requires validated measurement of digital health literacy including the empowerment construct. This new PROM appears as a relevant tool, but requires further validation.

Rating versus ranking in a Delphi survey: a randomized controlled trial.

BACKGROUND: The Delphi technique has steeply grown in popularity in health research as a structured approach to group communication process. Rating and ranking are two different procedures commonly used to quantify participants' opinions in Delphi surveys. We explored the influence of using a rating or ranking approach on item prioritization (main outcome), questionnaire completion time, and evaluation of task difficulty in a Delphi survey aimed at identifying priorities for the organization of primary cardiovascular care. METHODS: A randomized controlled parallel group trial was embedded in a three-round online Delphi survey. After an "open" first round, primary care patients, trained patient partners, and primary care clinicians from seven primary care practices were allocated 1:1 to a rating or ranking assessment group for the remainder of the study by stratified permuted block randomization, with strata based on participants' gender and status. Agreement on item prioritization between the experimental groups was measured by calculating Krippendorff's alpha reliability coefficient on the aggregate rank order of items in each group after the final round. Self-reported ease or difficulty with the assessment task was measured with the Single Ease Question. RESULTS: Thirty-six panelists (13 clinic patients, 7 patient partners, 16 clinicians; 60% females) were randomized to the rating (n = 18) or ranking (n = 18) group, with 30 (83%) completing all rounds. Both groups identified the same highest priorities from a set of 41 items, but significant discrepancies were found as early as the seventh top item. There was moderately strong agreement between the priority ordering of top items common to both groups (Krippendorff's alpha = 0.811, 95% CI = 0.669-0.920). A 9-min mean difference to complete the third-round questionnaire in favor of the rating group failed to achieve statistical significance (p = 0.053). Ranking was perceived as more difficult (p < 0.001). CONCLUSIONS: A rating or ranking procedure led to modestly similar item prioritization in a Delphi survey, but ranking was more difficult. This study should be replicated with a larger number of participants and with variations in the ranking and rating procedures. TRIAL REGISTRATION: Not applicable.

What are the top priorities of patients and clinicians for the organization of primary cardiovascular care in Quebec? A modified e-Delphi study.

BACKGROUND: Cardiovascular diseases are the leading cause of death and disability worldwide. Little is known about the organizational priorities of patients and clinicians involved in primary cardiovascular care. This study aimed to identify their shared top priorities and explore on which aspects their perspectives differed. METHODS: A three-round modified online Delphi study was carried out with patients and clinicians in seven academic primary care settings from metropolitan, suburban and small-town areas in Quebec, Canada. Patient partners experienced in the mobilization of their experiential knowledge also participated in the study. Following an "open" round, the items elicited were assessed by a combined rating and ranking approach. Items achieving an initial consensus level ≥70% were reassessed and then rank-ordered based on their final scores. Levels of consensus achieved among patients and clinicians were compared using Fisher's Exact tests. RESULTS: Thirty panelists completed the study (9 clinic patients, 7 patient partners and 14 clinicians). Out of 41 organizational aspects generated, six top priorities were shared by patients and clinicians. These related to listening and tailoring care to each patient, provision of personalized information, rapid response in the event of a problem, keeping professional training up-to-date, and relational and informational continuity of care. Statistically significant differences were found between patients' and clinicians' perspectives regarding the importance of offering healthy lifestyle and prevention activities at the clinic (lower for patients), timely access to the treating physician (higher for patients), and effective collaboration with specialist physicians (higher for patients). CONCLUSION: Although their views differ on some organizational aspects, patients and clinicians share a small set of top priorities for primary cardiovascular care that may be transferable to other chronic diseases. These top priorities should remain a central focus of clinical settings, alongside other primary care reform goals.

Patient engagement in care: A scoping review of recently validated tools assessing patients' and healthcare professionals' preferences and experience.

BACKGROUND: Patient engagement in care is a priority and a key component of clinical practice. Different approaches to care have been introduced to foster patient engagement. There is a lack of a recent review on tools for assessing the main concepts and dimensions related to patient engagement in care. OBJECTIVE: Our scoping review sought to map and summarize recently validated tools for assessing various concepts and dimensions of patient engagement in care. SEARCH STRATEGY: A scoping review of recent peer-reviewed articles describing tools that assess preferences in and experience with patient engagement in care was conducted in four databases (Ovid Medline, Ovid EMBASE, Cochrane Database of Systematic Reviews, CINAHL-EBSCO). We adopted a broad definition based on the main concepts of patient engagement in care: patient-centredness, empowerment, shared decision-making and partnership in care. MAIN RESULTS: Of 2161 articles found, 16, each describing a different tool, were included and analysed. Shared decision-making and patient-centredness are the two main concepts evaluated, often simultaneously in most of the tools. Only four scales measure patient-centredness, empowerment and shared decision-making at the same time, but no tool measures the core dimensions of partnership in care. Most of the tools did not include patients in their development or validation or just consulted them during the validation phase. DISCUSSION AND CONCLUSION: There is no tool coconstructed with patients from development to validation, which can be used to assess the main concepts and dimensions of patient engagement in care at the same time. PATIENT AND PUBLIC CONTRIBUTION: This manuscript was prepared with a patient expert who is one of the authors. Vincent Dumez, who is a patient expert and codirector of the Center of Excellence on Partnership with Patients and the Public, has contributed to the preparation of the manuscript.

Preferences for research design and treatment of comorbid depression among patients with an opioid use disorder: A cross-sectional discrete choice experiment.

BACKGROUND: Up to 74 % of people with an opioid use disorder (OUD) will experience depression in their lifetime. Understanding and addressing the concept of preference for depression treatments and clinical trial designs may serve as an important milestone in enhancing treatment and research outcomes. Our goal is to evaluate preferences for depression treatments and clinical trial designs among individuals with an OUD and comorbid depression. METHODS: We evaluated preferences for depression treatments and clinical trial designs using an online cross-sectional survey including a best-best discrete choice experiment. We recruited 165 participants from opioid agonist treatment clinics and community-based services in Calgary, Charlottetown, Edmonton, Halifax, Montreal, Ottawa, Quebec City, St. John's and Trois-Rivières, Canada. RESULTS: Psychotherapy was the most accepted (80.0 %; CI: 73.9-86.1 %) and preferred (31.5 %; CI: 24.4-38.6 %) treatment. However, there was a high variability in acceptability and preferences of depression treatments. Significant predictors of choice for depression treatments were administration mode depending on session duration (p < 0.001), access mode (p < 0.001) and treatment duration (p < 0.001). Significant predictors of choice for clinical trial designs were allocation type (p = 0.008) and monetary compensation (p = 0.033). Participants preferred participating in research compared to non-participation (p < 0.001). CONCLUSIONS: Accessibility and diversity of depression interventions, including psychotherapy, need to be enhanced in addiction services to ensure that all patients can receive their preferred treatment. Ensuring proper monetary compensation and comparing an intervention of interest with an active treatment might increase participation of depressed OUD patients in future clinical research initiative.

Assessing and promoting partnership between patients and health-care professionals: Co-construction of the CADICEE tool for patients and their relatives.

CONTEXT: Partnership between patients and health-care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. OBJECTIVE: To co-construct a tool for measuring the degree of partnership between patients and HCPs. DESIGN: The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co-construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. RESULTS: The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. CONCLUSIONS: The CADICEE tool is developed in co-construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health-care settings. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in determining the importance of constructing this questionnaire. They co-constructed it, pre-tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article.

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol.

BACKGROUND: Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. OBJECTIVE: This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations. METHODS: Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. DISCUSSION: The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

[Development of quality of care indicators to support chronic disease management]. / Élaboration d'indicateurs de qualité pour soutenir la gestion des maladies chroniques.

INTRODUCTION: This article presents the results of a project conducted by the Institut national d'excellence en santé et en services sociaux of Québec to develop quality of care indicators for the management of six chronic illnesses. METHODS: Indicators were identified through literature searches and analysis of clinical practice guidelines (CPGs). Interdisciplinary expert panels assessed their validity and the strength of the evidence on which they were based. Representatives of patients (N = 19) and professionals (N = 29) were consulted on their relevance and acceptability. Indicators were categorized according to the Chronic Care Model (CCM). RESULTS: A total of 164 indicators were developed, 126 specific to the illnesses under study and 38 on processes and outcomes generic to the CCM. There was convergence between patients and professionals on the relevance of a majority of indicators. Professionals expressed concerns on the indicators measured by means of patient surveys that they considered to be too subjective. DISCUSSION: The importance given to CPGs as the main source of indicators resulted in a great number of indicators of the technical quality ofcare. Using the CCM contributed to a broader perspective of quality. The consultation process identified some of the concerns of professionals about indicator measurement, thusguidingfuture implementation initiatives.

The patient-as-partner approach in health care: a conceptual framework for a necessary transition.

The prevalence of chronic diseases today calls for new ways of working with patients to manage their care. Although patient-centered approaches have contributed to significant advances in care and to treatments that more fully respect patients' preferences, values, and personal experiences, the reality is that health care professionals still hold a monopoly on the role of healer. Patients live with their conditions every day and are experts when it comes to their own experiences of illness; this expertise should be welcomed, valued, and fostered by other members of the care team. The patient-as-partner approach embodies the ideal of making the patient a bona fide member of the health care team, a true partner in his or her care. Since 2010, the University of Montreal, through the Direction of Collaboration and Patient Partnership, has embraced this approach. Patients are not only active members of their own health care team but also are involved in research and provide valuable training to health sciences students. Including patients as full partners in the health care team entails a significant shift in both the medical practice and medical education cultures. In this perspective, the authors describe this innovative approach to patient care, including the conceptual framework used in its development and the main achievements of patient partners in education, health care, and research.

Providing high-quality care in primary care settings: how to make trade-offs.

OBJECTIVE: To gain a deeper understanding of how primary care (PC) practices belonging to different models manage resources to provide high-quality care. DESIGN: Multiple-case study embedded in a cross-sectional study of a random sample of 37 practices. SETTING: Three regions of Quebec. PARTICIPANTS: Health care professionals and staff of 5 PC practices. METHODS: Five cases showing above-average results on quality-of-care indicators were purposefully selected to contrast on region, practice size, and PC model. Data were collected using an organizational questionnaire; the Team Climate Inventory, which was completed by health care professionals and staff; and 33 individual interviews. Detailed case histories were written and thematic analysis was performed. MAIN FINDINGS: The core common feature of these practices was their ongoing effort to make trade-offs to deliver services that met their vision of high-quality care. These compromises involved the same 3 areas, but to varying degrees depending on clinic characteristics: developing a shared vision of high-quality care; aligning resource use with that vision; and balancing professional aspirations and population needs. The leadership of the physician lead was crucial. The external environment was perceived as a source of pressure and dilemmas rather than as a source of support in these matters. CONCLUSION: Irrespective of their models, PC practices' pursuit of high-quality care is based on a vision in which accessibility is a key component, balanced by appropriate management of available resources and of external environment expectations. Current PC reforms often create tensions rather than support PC practices in their pursuit of high-quality care.

The team climate inventory as a measure of primary care teams' processes: validation of the French version.

PURPOSE: Evaluate the psychometric properties of the French version of the short 19-item Team Climate Inventory (TCI) and explore the contributions of individual and organizational characteristics to perceived team effectiveness. METHOD: The TCI was completed by 471 of the 618 (76.2%) healthcare professionals and administrative staff working in a random sample of 37 primary care practices in the province of Quebec. RESULTS: Exploratory factor analysis confirmed the original four-factor model. Cronbach's alphas were excellent (from 0.88 to 0.93). Latent class analysis revealed three-class response structure. Respondents in practices with professional governance had a higher probability of belonging to the "High TCI" class than did practices with community governance (36.7% vs. 19.1%). Administrative staff tended to fall into the "Suboptimal TCI" class more frequently than did physicians (36.5% vs. 19.0%). CONCLUSION: Results confirm the validity of our French version of the short TCI. The association between professional governance and better team climate merits further exploration.

Characteristics of primary care practices associated with high quality of care.

BACKGROUND: No primary practice care model has been shown to be superior in achieving high-quality primary care. We aimed to identify the organizational characteristics of primary care practices that provide high-quality primary care. METHODS: We performed a cross-sectional observational study involving a stratified random sample of 37 primary care practices from 3 regions of Quebec. We recruited 1457 patients who had 1 of 2 chronic care conditions or 1 of 6 episodic care conditions. The main outcome was the overall technical quality score. We measured organizational characteristics by use of a validated questionnaire and the Team Climate Inventory. Statistical analyses were based on multilevel regression modelling. RESULTS: The following characteristics were strongly associated with overall technical quality of care score: physician remuneration method (27.0; 95% confidence interval [CI] 19.0-35.0), extent of sharing of administrative resources (7.6; 95% CI 0.8-14.4), presence of allied health professionals (15.3; 95% CI 5.4-25.2) and/or specialist physicians (19.6; 95% CI 8.3-30.9), the presence of mechanisms for maintaining or evaluating competence (7.7; 95% CI 3.0-12.4) and average organizational access to the practice (4.9; 95% CI 2.6-7.2). The number of physicians (1.2; 95% CI 0.6-1.8) and the average Team Climate Inventory score (1.3; 95% CI 0.1-2.5) were modestly associated with high-quality care. INTERPRETATION: We identified a common set of organizational characteristics associated with high-quality primary care. Many of these characteristics are amenable to change through practice-level organizational changes.

Community-based programs to improve prevention and management of hypertension: recent Canadian experiences, challenges, and opportunities.

High blood pressure (BP) is the greatest risk of ill health and an early death worldwide. It is a key factor in the development of atherosclerosis, the main cause of vascular and cerebrovascular diseases, and is causally linked to kidney failure and dementia. Healthy lifestyle choices coupled with effective, population-based prevention strategies, early detection, and optimal treatment and control of high BP can substantially reduce the burden of vascular and cerebrovascular diseases. Considering the projected increases in the risk factors responsible for these conditions, it is imperative that effective population-based prevention strategies are developed, evaluated, and scaled-up. Extensive and rigourous evidence supports the promotion of healthy lifestyle choices to maintain low BP and prevent associated chronic diseases. Community-based programs are the prime tool for implementing a population strategy of prevention. Their aim is to shift the distribution of risk factors to lower levels across entire populations. Despite their great potential and more than a 4-decade history, it remains unclear to what extent such programs can be effectively implemented, scaled-up and sustained. We provide a broad overview of community-based programs implemented to address cardiovascular disease risk factors, focus on the recent Canadian experience in this area, and highlight the main challenges and opportunities currently associated with them. Recent Canadian initiatives have shown encouraging results, some of them focusing on high-risk subgroups. These initiatives demonstrate feasibility and benefits of implementing community-based programs for the prevention and management of cardiovascular disease in Canada.

Patients' experience of chronic illness care in a network of teaching settings.

OBJECTIVE: To evaluate chronic illness care delivery from the patient's perspective and to examine its main correlates. DESIGN: Cross-sectional, descriptive study using questionnaires and medical chart review. SETTING: Nine teaching family practices in Quebec. PARTICIPANTS: A total of 364 patients with diabetes, hypertension, or chronic obstructive pulmonary disease. MAIN OUTCOMES MEASURES: Score on the Patient Assessment of Chronic Illness Care (PACIC) questionnaire, which evaluates the patient's perspective on the care received based on the chronic care model (CCM); patients characteristics (sex, level of education, number of chronic illnesses); patient-physician relationship (relational continuity, interpersonal communication assessed from the patient's perspective); and interdisciplinary care and technical quality of care abstracted from patients' medical charts. RESULTS: The mean PACIC score obtained (2.8 out of 5) indicates that, on average, CCM-concordant care "generally did not occur" or occurred only "sometimes" in this network of teaching practices. However, with a mean technical quality-of-care score of nearly 80%, physicians in this network showed a high degree of adherence to clinical guidelines for the chronic illnesses under study. Patient education level lower than high school was negatively associated with PACIC scores, while positive associations were found with male sex, number of chronic illnesses, relational continuity, interpersonal communication, interdisciplinary care, and technical quality of care. CONCLUSION: Patients with less education reported receiving less CCM-concordant care. The patient-physician relationship was the strongest correlate of PACIC scores, while interdisciplinary care and technical quality of care had modest contributions.

Investigating the barriers to teaching family physicians' and specialists' collaboration in the training environment: a qualitative study.

BACKGROUND: Collaboration between physicians in different specialties is often taken for granted. However, poor interactions between family physicians and specialists contribute significantly to the observed discontinuity between primary and specialty care. The objective of this study was to explore how collaboration between family physicians and specialists was conceptualised as a competency and experienced in residency training curricula of four faculties of medicine in Canada. METHODS: This is a multiple-case study based on Abbott's theory of professions. Programs targeted were family medicine, general psychiatry, radiology, and internal medicine. The content of the programs' objectives was analyzed. Associate deans of postgraduate studies, program directors, educators, and residents were interviewed individually or in focus groups (47 residents and 45 faculty members). RESULTS: The training objectives related to family physicians-specialists collaboration were phrased in very general terms and lacked specificity. Obstacles to effective collaboration were aggregated under themes of professional responsibility and questioned expertise. Both trainees and trainers reported increasing distances between specialty and general medicine in three key fields of the professional system: the workplace arena, the training setting, and the production of academic knowledge. CONCLUSION: The challenges of developing collaborating skills between generalists and specialist physicians are comparable in many ways to those encountered in inter-professional collaboration and should be given more consideration than they currently receive if we want to improve coordination between primary and specialty care.