International cross-cultural development and field testing of the primary care practice questionnaire for the PaRIS survey (PaRIS-PCPQ).

BACKGROUND: The PaRIS survey, an initiative of the Organisation for Economic Co-operation and Development (OECD), aims to assess health systems performance in delivering primary care by measuring the care experiences and outcomes of people over 45 who used primary care services in the past six months. In addition, linked data from primary care practices are collected to analyse how the organisation of primary care practices and their care processes impact care experiences and outcomes. This article describes the development and validation of the primary care practice questionnaire for the PaRIS survey, the PaRIS-PCPQ. METHOD: The PaRIS-PCPQ was developed based on domains of primary care practice and professional characteristics included in the PaRIS conceptual framework. Questionnaire development was conducted in four phases: (1) a multi-step consensus-based development of the source questionnaire, (2) translation of the English source questionnaire into 17 languages, (3) cross-national cognitive testing with primary care professionals in participating countries, and (4) cross-national field-testing. RESULTS: 70 items were selected from 7 existing questionnaires on primary care characteristics, of which 49 were included in a first draft. Feedback from stakeholders resulted in a modified 34-item version (practice profile, care coordination, chronic care management, patient follow-up, and respondent characteristics) designed to be completed online by medical or non-medical staff working in a primary care practice. Cognitive testing led to changes in the source questionnaire as well as to country specific localisations. The resulting 32-item questionnaire was piloted in an online survey and field test. Data from 540 primary care practices from 17 countries were collected and analysed. Final revision resulted in a 34-item questionnaire. CONCLUSIONS: The cross-national development of a primary care practice questionnaire is challenging due to the differences in care delivery systems. Rigorous translation and cognitive testing as well as stakeholder engagement helped to overcome most challenges. The PaRIS-PCPQ will be used to assess how key characteristics of primary care practices relate to the care experiences and outcomes of people living with chronic conditions. As such, policymakers and care providers will be informed about the performance of primary care from the patient's perspective.

Patient Reported Indicator Surveys (Paris): Methodological Considerations of a Field Trial in Slovenia.

Introduction: Healthcare systems collect little information about the experiences and outcomes of care from the perspectives of patients. Patient Reported Indicator Surveys (PaRIS) is an OECD initiative to measure the outcomes and experiences of people living with chronic conditions, who are managed in primary care. Objectives: To evaluate the feasibility of the methodology employed in the Field Trial of the PaRIS survey in Slovenia and propose adjustments to enhance sampling in the Main Survey. Methods: In 2022, we conducted a cross-sectional observational study in 50 family medicine practices in Slovenia with a target of recruiting 70 patients per practice. We used the Slovenian version of the PaRIS questionnaires, and evaluated sampling and data collection. Results: The sample contained 21 providers (42.0% response rate) and 454 patients (50.7% response rate). The provider sample did not differ from the population characteristics, while the patient sample differed significantly from the patient population. All providers completed the survey online, in 20.9±11.1 minutes and had 1.5±1.5 restarts. Most patients (74.9%) completed the survey online and needed 36.0±22.6 minutes, and the mean number of restarts was 1.4±2.2. Conclusion: Based on the results, we recommend conducting a methodology test for quality assessment studies before initiating the main survey. Legal issues should be addressed and considered early when developing the methodology. It is also necessary to be aware of the feasibility of the study in practice, to avoid a low participation rate.

Patient-Reported Outcomes and Experiences Assessment in Women with Breast Cancer: Portuguese Case Study.

In 2020, female breast cancer was the most commonly diagnosed cancer worldwide, representing the type of cancer with the highest incidence among women and the second most common cause of cancer death among women in all OECD countries. The conventional measures addressing the burden of breast cancer by measuring mortality, incidence, and survival do not entirely reflect the quality of life and patients experience when receiving breast cancer care. The main objective of this study is to capture patient-reported outcomes and experiences in women with breast cancer in Portugal using methods developed for international benchmarking purposes, such as the OECD Patient-reported Indicators Surveys. The study included 378 women with breast cancer, with the age distribution being 19.8% aged 15 to 49 years and 80.2% aged 50 years and over. The data collection procedure and analysis followed the "OECD Breast Cancer Patient Reported Outcomes Working Group" protocol, allowing subsequent comparability with data from other OECD member countries. Most women were satisfied with the treatment outcome regarding the shape of their lumpectomy breast when wearing a bra (96.1%) and with the equal size of both breasts (78.3%). Findings on the WHO QOL-BREF showed that women manifest a lower score in well-being when compared with the general population or populations living with chronic diseases. This study shows the feasibility of implementing and using patient-reported metrics (PROM and PREM) in breast cancer services in Portugal. Measuring PROMs and PREMs from Portuguese women receiving breast cancer care provides insightful evidence into the quality and value of cancer care.

Assessing the outcomes and experiences of care from the perspective of people living with chronic conditions, to support countries in developing people-centred policies and practices: study protocol of the International Survey of People Living with Chronic Conditions (PaRIS survey).

INTRODUCTION: In view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey. METHODS AND ANALYSIS: As primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023. ETHICS AND DISSEMINATION: Informed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world.

How do Patient-reported Outcome Scores in International Hip and Knee Arthroplasty Registries Compare?

BACKGROUND: Patient-reported outcome measures (PROMs) are the only systematic approach through which the patient's perspective can be considered by surgeons (in determining a procedure's efficacy or appropriateness) or healthcare systems (in the context of value-based healthcare). PROMs in registries enable international comparison of patient-centered outcomes after total joint arthroplasty, but the extent to which those scores may vary between different registry populations has not been clearly defined. QUESTIONS/PURPOSES: (1) To what degree do mean change in general and joint-specific PROM scores vary across arthroplasty registries, and to what degree is the proportion of missing PROM scores in an individual registry associated with differences in the mean reported change scores? (2) Do PROM scores vary with patient BMI across registries? (3) Are comorbidity levels comparable across registries, and are they associated with differences in PROM scores? METHODS: Thirteen national, regional, or institutional registries from nine countries reported aggregate PROM scores for patients who had completed PROMs preoperatively and 6 and/or 12 months postoperatively. The requested aggregate PROM scores were the EuroQol-5 Dimension Questionnaire (EQ-5D) index values, on which score 1 reflects "full health" and 0 reflects "as bad as death." Joint-specific PROMs were the Oxford Knee Score (OKS) and the Oxford Hip Score (OHS), with total scores ranging from 0 to 48 (worst-best), and the Hip Disability and Osteoarthritis Outcome Score-Physical Function shortform (HOOS-PS) and the Knee Injury and Osteoarthritis Outcome Score-Physical Function shortform (KOOS-PS) values, scored 0 to 100 (worst-best). Eligible patients underwent primary unilateral THA or TKA for osteoarthritis between 2016 and 2019. Registries were asked to exclude patients with subsequent revisions within their PROM collection period. Raw aggregated PROM scores and scores adjusted for age, gender, and baseline values were inspected descriptively. Across all registries and PROMs, the reported percentage of missing PROM data varied from 9% (119 of 1354) to 97% (5305 of 5445). We therefore graphically explored whether PROM scores were associated with the level of data completeness. For each PROM cohort, chi-square tests were performed for BMI distributions across registries and 12 predefined PROM strata (men versus women; age 20 to 64 years, 65 to 74 years, and older than 75 years; and high or low preoperative PROM scores). Comorbidity distributions were evaluated descriptively by comparing proportions with American Society of Anesthesiologists (ASA) physical status classification of 3 or higher across registries for each PROM cohort. RESULTS: The mean improvement in EQ-5D index values (10 registries) ranged from 0.16 to 0.33 for hip registries and 0.12 to 0.25 for knee registries. The mean improvement in the OHS (seven registries) ranged from 18 to 24, and for the HOOS-PS (three registries) it ranged from 29 to 35. The mean improvement in the OKS (six registries) ranged from 15 to 20, and for the KOOS-PS (four registries) it ranged from 19 to 23. For all PROMs, variation was smaller when adjusting the scores for differences in age, gender, and baseline values. After we compared the registries, there did not seem to be any association between the level of missing PROM data and the mean change in PROM scores. The proportions of patients with BMI 30 kg/m 2 or higher ranged from 16% to 43% (11 hip registries) and from 35% to 62% (10 knee registries). Distributions of patients across six BMI categories differed across hip and knee registries. Further, for all PROMs, distributions also differed across 12 predefined PROM strata. For the EQ-5D, patients in the younger age groups (20 to 64 years and 65 to 74 years) had higher proportions of BMI measurements greater than 30 kg/m 2 than older patients, and patients with the lowest baseline scores had higher proportions of BMI measurements more than 30 kg/m 2 compared with patients with higher baseline scores. These associations were similar for the OHS and OKS cohorts. The proportions of patients with ASA Class at least 3 ranged across registries from 6% to 35% (eight hip registries) and from 9% to 42% (nine knee registries). CONCLUSION: Improvements in PROM scores varied among international registries, which may be partially explained by differences in age, gender, and preoperative scores. Higher BMI tended to be associated with lower preoperative PROM scores across registries. Large variation in BMI and comorbidity distributions across registries suggest that future international studies should consider the effect of adjusting for these factors. Although we were not able to evaluate its effect specifically, missing PROM data is a recurring challenge for registries. Demonstrating generalizability of results and evaluating the degree of response bias is crucial in using registry-based PROMs data to evaluate differences in outcome. Comparability between registries in terms of specific PROMs collection, postoperative timepoints, and demographic factors to enable confounder adjustment is necessary to use comparison between registries to inform and improve arthroplasty care internationally. LEVEL OF EVIDENCE: Level III, therapeutic study.

The expectations of transgender people in the face of their health-care access difficulties and how they can be overcome. A qualitative study in France.

AIM: Our objective was to explore the difficulties experienced by transgender people in accessing primary health-care services and their expectations towards primary care providers to improve their health-care access. BACKGROUND: Because transgender people are exposed to many discriminations, their health-care access is particularly poor. Guidelines recommend greater involvement of primary care providers in the processes because of the accessibility feature of primary care services. METHODS: A qualitative study using semi-directed interviews was conducted among 27 transgender people (February 2018 - August 2018). These voluntary participants were recruited through different means: local trans or LGBTI (lesbian, gay, bisexual, trans, and/or intersex) associations, primary care providers, and social networks. The data analysis was based on reflexive thematic analysis in an inductive approach. FINDINGS: Difficulties in accessing health-care occurred at all the levels of the primary health-care system: primary care providers - transgender people interaction, access to the primary care team facility (starting with the secretariat), access to secondary care specialists, and continuity of care. Transgender people report ill-adapted health-care services as a result of gender-based identification in health-care settings. Their main expectation was depsychiatrization and self-determination. They supported mixed health network comprising primary care providers and transgender people with a coordinating role for the general practitioner. These expectations should be priorities to consider in our primary health-care system to improve access to health-care for transgender people.

Collaboration of primary care and public health at the local level: observational descriptive study of French local health contracts.

AIM: In this paper, we report on a study investigating the involvement of primary care providers in French local health contracts. BACKGROUND: Worldwide actions are carried out to improve collaboration between primary care and public health to strengthen primary healthcare and consequently community health. In France, the local health contract is an instrument mobilising local stakeholders from different sectors to join in their actions to improve the health of the population. METHODS: We developed an instrument to analyse the frequency and nature of involvement of primary care providers in 428 action plans extracted from a sample of 17 contracts (one per French region). The number of primary care actions were counted, and thematic analyses were conducted to identify the nature and level of involvement of the professionals. FINDINGS: Primary care providers were involved in 20.1% (n = 86) of the action plans and were mostly described as a target of the action rather than leaders or partners. Within those action plans, 76.7% (n = 66) of these action plans aimed to improve access to care for local communities; an issue that appears as the main driver of collaboration between public health and primary care actors.

Perspectives of deprived patients on diabetes self-management programmes delivered by the local primary care team: a qualitative study on facilitators and barriers for participation, in France.

BACKGROUND: Diabetes self-management education (DSME) is an effective intervention for patients with type 2 diabetes mellitus (T2DM); nevertheless, patient participation in this type of programme is low. Implementation of DSME programmes in primary care practices by the local multi-professional team is a potential strategy to improve access to DSME for T2DM patients. The aim of this study was to identify perceived facilitators and barriers by patients to participation in local DSME delivered by primary care professionals in France. METHOD: T2DM patients, informed and recruited during consulting with their usual care provider, who had attended a structured and validated DSME programme delivered by 13 primary care providers within a multi-professional primary care practice in a deprived area of 20,000 inhabitants, were invited to participate in this study. A qualitative study with semi-structured, in-depth interviews was conducted with study participants, between July 2017 and February 2018. A reflexive thematic analysis of the interviews was carried out. Coding schemes were developed to generate thematic trends in patient descriptions of facilitators and barriers to DSME participation. RESULTS: Nineteen interviews (mean length 31 min; [20-44 min]) were completed with T2DM patients. Four themes on facilitators for programme participation emerged from the data: geographical proximity of a DSME programme held in the local multi-professional primary care practice; effective promotion of the DSME programme by the local multi-professional team; pre-existing relationship between patients and their healthcare providers; and potential to establish new social interactions within the neighbourhood by participating in the programme. Three themes on barriers to attendance emerged: integrating the DSME programme into their own schedules; difficulties in expressing themselves in front of a group; and keeping the motivation for self-managing their T2DM. CONCLUSIONS: From the patient perspective, the programme geographical proximity and the pre-existing patient-healthcare provider relationship were important factors that contributed to participation. Healthcare providers should consider these factors to improve access to DSME programmes and diabetes self-management in deprived populations. Longitudinal studies should be performed to measure the impact of these programmes.

Health Literacy: From a Property of Individuals to One of Communities.

Health literacy (HL) is increasingly hailed as a strategy to improve the control individuals have over their health. A central critic of HL intervention is its overemphasis on individual level factors, something recognised in the 2008 report of the Commission of Social Determinants of Health (SDoH) that recommended expanding the scope of HL to cover the SDoH. The objective of our study was to assess the extent to which recent progress on HL captures the need for collective action on the SDoH. We conducted a scoping review on PubMed looking for review papers published between 2013-2018 in English and French. Definitions of HL were analysed against two main dimensions (i.e., locus of change of HL strategies and foreseen outcome of HL improvements). Despite a number of authors calling for more research on HL interventions at the community level and an expansion of the definition to cover the SDoH, we found that the recommendation of the Commission has yet to be implemented. Even when the definitions include the capacities of individuals on distal determinants, both the locus of change and outcomes of HL improvement do not go beyond intra individual factors (knowledge, skills, etc.). It is noteworthy that communities were either framed as a setting outside of health care services or as an aggregate of individuals. We found no instance of HL intervention regarding communities as complex systems of actors sharing a common space and dynamic. We conclude by suggesting a new definition of HL and by drawing attention to the research gap in addressing the upstream SDoH through HL actions.

Collaborative global health E-learning: A Massive Open Online Course experience of young family doctors.

Massive Open Online Courses (MOOCs) are unlimited web-based courses accessed through computers, smartphones, or other digital devices. Although they have multiple advantages, a common challenge is the low course completion rates. Young family doctors of the World Organization of Family Doctors (WONCA) from more than 20 countries recently completed an initiative that combined social media platforms with a MOOC offered by Harvard University. This resulted in a completion rate five times greater than the baseline rate. We propose perfecting and expanding this method to augment continued medical education, collaboration, and best practice exchange among WONCA's members and participating organizations worldwide.

Attitudes toward the elderly among young family physicians in Turkey.

INTRODUCTION: General practitioners'(GPs) role is important as they are easily accessible especially for elderly. Young GPs need to improve their attitudes toward the elderly so that they can be a part of solution for health problems of elderly in the future. The aim of this study is to determine attitudes of young GPs toward elderly by the University of California at Los Angeles Geriatrics Attitude Scale (UCLA-GAS). METHODS: It is a cross-sectional study performed with questionnaires including UCLA-GAS. The study population was 260 young doctors (GP residents and GPs in their first 5 years after qualification). Statistical evaluation of the data included percentage, mean, and Kolmogorov-Smirnov test and analysis of variance test. RESULTS: Of the participants, 58.1% (n = 151) were women, 35.4% (n = 94) of them were GPs, and the remaining were GP residents. The mean age was 31.30 ± 5.40 years (range = 24-55 years). The mean score of UCLA-GAS was 46.85 ± 5.63 (range = 30-61). Participants ≤30 years of age had significantly higher scores (47.70 ± 5.99) than age above 30 years (45.68 ± 4.89) (P = 0.003). There was no statistically significant difference between GP residents and GPs (P = 0.989) and between participants who had rotation in elderly healthcare service (n = 63) or not (n = 197) (P = 0.383). However, as the duration of work increased, the score of UCLA-GAS decreased significantly (r = -0.216, P < 0.001). CONCLUSION: Young doctors who were interested in elderly showed more positive attitude as expected. However, the ones who were older and worked longer had less positive attitude. It seems important to understand and prevent this unfavourable attitude with formal education system about elderly healthcare during residency.

Cardiovascular disease patients have increased risk for comorbidity: A cross-sectional study in the Netherlands.

BACKGROUND: Comorbidity is a cause of increased mortality, decreased quality of life and increased use of healthcare services. It is important particularly for physicians and other healthcare providers in primary care settings to evaluate these patients properly. Cardiovascular diseases (CVD) are the most common cause of death from non-communicable diseases worldwide and are characterized by a high level of comorbidities. OBJECTIVES: To address the distribution of CVDs and comorbidities across sociodemographic groups and associations between CVDs and comorbidities. METHODS: A cross-sectional study was conducted using data of 67 786 patients. Data were collected by the Registration Network Family Practices (RegistratieNet Huisartspraktijken, RNH). Comorbidities were analysed using chi-square and logistic regression analyses. RESULTS: At the time of study, 26.5% of the patients had at least one CVD and 10.5% of patients had two or more CVD diagnoses. The strongest association within cardiovascular diseases were between health failure and arrhythmias (OR: 9.20; 95%CI: 7.78-10.89). Coronary artery disease and hypertension had strong relationship with diabetes (OR: 2.22; 95%CI: 2.02-2.45, OR: 2.22; 95%CI: 2.02-2.45 respectively) and lipid metabolism disorders (OR: 2.04; 95%CI: 1.87-2.23, OR: 2.04; 95%CI: 1.87-2.23, respectively). The strongest associations for cerebrovascular diseases were with epilepsy (OR: 4.09; 95%CI: 3.29-5.10) and arrhythmias (OR: 2.23; 95%CI: 1.99-2.50). CONCLUSION: One out of every four patients suffered from at least one CVD. Having one CVD increased the risk of another, co-occurring CVD and a higher number of other chronic diseases.