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BackgroundThe Organisation for Economic Co-operation and Development (OECD) Patient-Reported Indicator Surveys (PaRIS) initiative aims to support countries in improving care for people living with chronic conditions by collecting information on how people experience the quality and performance of primary and (generalist) ambulatory care services. This paper presents the development of the conceptual framework that underpins the rationale for and the instrumentation of the PaRIS survey., Methods: The guidance of an international expert taskforce and the OECD Health Care Quality Indicators framework (2015) provided initial specifications for the framework. Relevant conceptual models and frameworks were then identified from searches in bibliographic databases (Medline, EMBASE and the Health Management Information Consortium). A draft framework was developed through narrative review. The final version was codeveloped following the participation of an international Patient advisory Panel, an international Technical Advisory Community and online international workshops with patient representatives., Results: 85 conceptual models and frameworks were identified through searches. The final framework maps relationships between the following domains (and subdomains): patient-reported outcomes (symptoms, functioning, self-reported health status, health-related quality of life); patient-reported experiences of care (access, comprehensiveness, continuity, coordination, patient safety, person centeredness, self-management support, trust, overall perceived quality of care); health and care capabilities; health behaviours (physical activity, diet, tobacco and alcohol consumption), sociodemographic characteristics and self-reported chronic conditions; delivery system characteristics (clinic, main healthcare professional); health system, policy and context., Discussion: The PaRIS conceptual framework has been developed through a systematic, accountable and inclusive process. It serves as the basis for the development of the indicators and survey instruments as well as for the generation of specific hypotheses to guide the analysis and interpretation of the findings., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Healthcare professionals have first-hand experience with patients in clinical practice and the dynamics in the healthcare system, which can be of great value in the design, implementation, data analysis and dissemination of research study results. Primary care professionals are particularly important as they provide first contact, accessible, coordinated, comprehensive and continuous people-focused care. However, in-depth examination of the engagement of health professionals in health system research and planning activities-how professionals are engaged and how this varies across national contexts- is limited, particularly in international initiatives. There is a need to identify gaps in the planning of engagement activities to inform the design and successful implementation of future international efforts to improve the responsiveness of health systems to the changing needs of patients and professionals. The aim of this study was to explore how primary care professionals were engaged in the design and implementation plans of an international health policy study led by the Organisation for Economic Co-operation and Development (OECD). The OECD's international PaRIS survey measures and disseminates information on patient-reported outcome and experience measures (PROMs and PREMs) of people living with chronic conditions who are managed in primary care. A documentary analysis of 17 written national implementation plans (country roadmaps) was conducted between January and June 2023. Two reviewers independently performed the screening and data abstraction and resolved disagreements by discussion. We reported the intended target primary care professionals, phase of the study, channel of engagement, level of engagement, and purpose of engagement. All 17 countries aimed to engage primary care professionals in the execution plans for the international PaRIS survey. While organisations of primary care professionals, particularly of family doctors, were the most commonly targeted group, variation was found in the timing of engagement activities during the different phases of the study and in the level of engagement, ranging from co-development (half of the countries co-developed the survey together with primary care professionals) to one-off consultations with whom. International guidance facilitated the participation of primary care professionals. Continuous collaborative efforts at the international and national levels can foster a culture of engagement with primary care organisations and individual professionals and enhance meaningful engagement of primary care professionals., (© 2024. The Author(s).)

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., (© 2024. The Author(s).)

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., Competing Interests: CONFLICTS OF INTEREST The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper., (© 2024 Matija AMBROŽ et al., published by Sciendo.)

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.

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., Competing Interests: All ICMJE Conflict of Interest Forms for authors and Clinical Orthopaedics and Related Research® editors and board members are on file with the publication and can be viewed on request., (Copyright © 2022 by the Association of Bone and Joint Surgeons.)

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., Competing Interests: Competing interests: The authors’ institutes received funding from OECD Member States, other countries participating in the PaRIS survey and the European Commission to develop and implement the PaRIS survey. Authors LT, RW, OG and JB work for a private company., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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.

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.

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 (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.

Objective: To evaluate monthly percentage changes of intact parathyroid hormone (iPTH) and other major bone marker levels in patients with secondary hyperparathyroidism (SHPT) undergoing hemodialysis (HD) and receiving paricalcitol., Methods: A total of 493 (F/M 244/249) adult patients with SHPT who were undergoing HD in 22 HD units and receiving paricalcitol treatment, with iPTH > 300 mg/mL, adjusted serum levels of calcium (Ca) < 10.2 mg/dL, and serum levels of inorganic phosphorus (iP) < 6 mg/dL were included in this multi-center, national, prospective, observational study. Data regarding efficacy, safety, and adverse events of paricalcitol treatment were collected during a 12-month follow-up period through monthly visits along with serum iPTH, Ca, iP, alkaline phosphatase (ALP) and other required biochemistry tests as necessary. Mortality data until 6 months after the end of the study were also investigated., Results: The mean age was 58.3 ± 15.8 years and the mean duration of HD was 6.2 ± 5.5 years, respectively. As of 12th month, mean iPTH values decreased from 646 ± 424 pg/mL to 473 ± 387 pg/mL (p < 0.001); no statistically significant changes were observed in Ca levels (p > 0.05). Serum ALP levels also significantly decreased (p = 0.001) and serum phosphorus levels significantly increased (p < 0.001) during the study observation period. Reasons for early terminations were being lost to follow-up (n = 119, 24.1%), hyperphosphatemia (iP > 6 mg/dL, n = 108, 21.9%), low iPTH levels (iPTH < 150 mg/dL, n = 97, 19.7%), and withdrawal of consent (n = 41, 8.3%). In total 32 patients (6.5%) were prematurely terminated the study with hypercalcemia (Ca > 10.2 mg/dL). 46.9% of those hypercalcemic patients had other anomalies with iP and iPTH levels along with hypercalcemia., Conclusion: Paricalcitol treatment, resulted in successful iPTH control. In approximately 6.5% of the patients paricalcitol treatment was discontinued since Ca levels reached > 10.2 mg/dL in those patients. No unfavorable effects on serum phosphorus and Ca-phosphorus (Ca × P) product were observed.

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.

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., Competing Interests: There are no conflicts of interest.

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., Competing Interests: There are no conflicts of interest.