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This study aimed to determine whether a text message is as good as a postal letter as an invitation method for previous screenees in a breast cancer screening program, considering a non-inferiority margin of -2 percent points on participation rate. A non-inferiority randomized control trial was conducted. Women in the intervention group (n = 5,362) were invited by text message, and women in the control group (n = 5,482) were invited by letter, which is the standard invitation procedure of the program. In both groups, the invitation included a fixed appointment for mammography and a text message reminder 96 hours before the appointment. The primary outcome was screening participation rate (completing mammography within 12 weeks of invitation). Secondary outcomes included mammography attendance to initial or rescheduled appointments and cancellation rate. The intention-to-treat analysis showed a participation rate of 87.3% and 86.6% in the control and intervention groups, respectively. The difference in participation rate was -0.7 percentage points (95% confidence interval [CI], -1.8 to ∞), indicating non-inferiority of text messages compared to letter invitations. The per-protocol analysis showed similar results. Attendance at the initial appointment was higher in women who received the text message invitation compared to those in the control group (P

Abstract Context The literature on self‐management interventions (SMIs) is growing exponentially, but it is characterized by heterogeneous reporting that limits comparability across studies and interventions. Building an SMI taxonomy is the first step towards creating a common language for stakeholders to drive research in this area and promote patient self‐management and empowerment. Objective To develop and validate the content of a comprehensive taxonomy of SMIs for long‐term conditions that will help identify key characteristics and facilitate design, reporting and comparisons of SMIs. Methods We employed a mixed‐methods approach incorporating a literature review, an iterative consultation process and mapping of key domains, concepts and elements to develop an initial SMI taxonomy that was subsequently reviewed in a two‐round online Delphi survey with a purposive sample of international experts. Results The final SMI taxonomy has 132 components classified into four domains: intervention characteristics, expected patient/caregiver self‐management behaviours, outcomes for measuring SMIs and target population characteristics. The two‐round Delphi exercise involving 27 international experts demonstrated overall high agreement with the proposed items, with a mean score (on a scale of 1‐9) per component of 8.0 (range 6.1‐8.8) in round 1 and 8.1 (range 7.0‐8.9) in round 2. Conclusions The SMI taxonomy contributes to building a common framework for the patient self‐management field and can help implement and improve patient empowerment and facilitate comparative effectiveness research of SMIs. Patient or public contribution. Patients’ representatives contributed as experts in the Delphi process and as partners of the consortium.

Abstract Background Breast cancer (BC) clinical guidelines offer evidence-based recommendations to improve quality of healthcare for patients with or at risk of BC. Suboptimal adherence to recommendations has the potential to negatively affect population health. However, no study has systematically reviewed the impact of BC guideline adherence -as prognosis factor- on BC healthcare processes and health outcomes. The objectives are to analyse the impact of guideline adherence on health outcomes and on healthcare costs. Methods We searched systematic reviews and primary studies in MEDLINE and Embase, conducted in European Union (EU) countries (inception to May 2019). Eligibility assessment, data extraction, and risk of bias assessment were conducted by one author and crosschecked by a second. We used random-effects meta-analyses to examine the impact of guideline adherence on overall survival and disease-free survival, and assessed certainty of evidence using GRADE. Results We included 21 primary studies. Most were published during the last decade (90%), followed a retrospective cohort design (86%), focused on treatment guideline adherence (95%), and were at low (80%) or moderate (20%) risk of bias. Nineteen studies (95%) examined the impact of guideline adherence on health outcomes, while two (10%) on healthcare cost. Adherence to guidelines was associated with increased overall survival (HR = 0.67, 95%CI 0.59–0.76) and disease-free survival (HR = 0.35, 95%CI 0.15–0.82), representing 138 more survivors (96 more to 178 more) and 336 patients free of recurrence (73 more to 491 more) for every 1000 women receiving adherent CG treatment compared to those receiving non-adherent treatment at 5 years follow-up (moderate certainty). Adherence to treatment guidelines was associated with higher costs, but adherence to follow-up guidelines was associated with lower costs (low certainty). Conclusions Our review of EU studies suggests that there is moderate certainty that adherence to BC guidelines is associated with an improved survival. BC guidelines should be rigorously implemented in the clinical setting. Trial registration PROSPERO ( CRD42018092884 ).

Objective This study aims to better understand the current practice of clinical guideline adaptation and identify challenges raised in this process, given that published adapted clinical guidelines are generally of low quality, poorly reported and not based on published frameworks.Design A qualitative study based on semistructured interviews. We conducted a framework analysis for the adaptation process, and thematic analysis for participants’ views and experiences about adaptation process.Setting Nine guideline development organisations from seven countries.Participants Guideline developers who have adapted clinical guidelines within the last 3 years. We identified potential participants through published adapted clinical guidelines, recommendations from experts, and a review of the Guideline International Network Conference attendees’ list.Results We conducted ten interviews and identified nine adaptation methodologies. The reasons for adapting clinical guidelines include developing de novo clinical guidelines, implementing source clinical guidelines, and harmonising and updating existing clinical guidelines. We identified the following core steps of the adaptation process (1) selection of scope and source guideline(s), (2) assessment of source materials (guidelines, recommendations and evidence level), (3) decision-making process and (4) external review and follow-up process. Challenges on the adaptation of clinical guidelines include limitations from source clinical guidelines (poor quality or reporting), limitations from adaptation settings (lacking resources or skills), adaptation process intensity and complexity, and implementation barriers. We also described how participants address the complexities and implementation issues of the adaptation process.Conclusions Adaptation processes have been increasingly used to develop clinical guidelines, with the emergence of different purposes. The identification of core steps and assessment levels could help guideline adaptation developers streamline their processes. More methodological research is needed to develop rigorous international standards for adapting clinical guidelines.

Abstract Background Personalized breast cancer screening is a novel strategy that estimates individual risk based on age, breast density, family history of breast cancer, personal history of benign breast lesions, and polygenic risk. Its goal is to propose personalized early detection recommendations for women in the target population based on their individual risk. Our aim was to synthesize the factors that influence women’s decision to participate in personalized breast cancer screening, from the perspective of women and health care professionals. Methods Systematic review of qualitative evidence on factors influencing participation in personalized Breast Cancer Screening. We searched in Medline, Web of science, Scopus, EMBASE, CINAHL and PsycINFO for qualitative and mixed methods studies published up to March 2022. Two reviewers conducted study selection and extracted main findings. We applied the best-fit framework synthesis and adopted the Multilevel influences on the cancer care continuum model for analysis. After organizing initial codes into the seven levels of the selected model, we followed thematic analysis and developed descriptive and analytical themes. We assessed the methodological quality with the Critical Appraisal Skills Program tool. Results We identified 18 studies published between 2017 and 2022, conducted in developed countries. Nine studies were focused on women (n = 478) and in four studies women had participated in a personalized screening program. Nine studies focused in health care professionals (n = 162) and were conducted in primary care and breast cancer screening program settings. Factors influencing women’s decision to participate relate to the women themselves, the type of program (personalized breast cancer screening) and perspective of health care professionals. Factors that determined women participation included persistent beliefs and insufficient knowledge about breast cancer and personalized screening, variable psychological reactions, and negative attitudes towards breast cancer risk estimates. Other factors against participation were insufficient health care professionals knowledge on genetics related to breast cancer and personalized screening process. The factors that were favourable included the women’s perceived benefits for themselves and the positive impact on health systems. Conclusion We identified the main factors influencing women’s decisions to participate in personalized breast cancer screening. Factors related to women, were the most relevant negative factors. A future implementation requires improving health literacy for women and health care professionals, as well as raising awareness of the strategy in society.

Background:For many chronically ill patients self-management of their disease is difficult. This may be especially true for people with limited health literacy as they are faced with additional challenges in the day-to-day management of their disease. Research has shown that self-management support is most effective when tailored to the needs and preferences of patients. Therefore, this study explores the preferences regarding self-management outcomes of chronically ill patients with limited health literacy.MethodsA total of 35 patients with limited health literacy were invited to a concept-mapping procedure consisting of two card sorting tasks. Patients ranked 60 outcomes, which are often found in literature in relation to self-management, to the level that was important for themselves. Means were calculated for each outcome and domain, and differences within the group were analyzed.ResultsFor patients with limited health literacy, satisfaction with care is the most important outcome domain. This domain includes overall satisfaction, the communication with health care providers, the provision of information and trust. At an outcome level, outcomes related to symptom management and improving competences to self-management scored very high. No differences between patient groups for age and sex were found.ConclusionChronically ill patients with limited health literacy prefer a wide variety of outcomes for their self-management. Next to health related outcomes, patients mostly prefer to work on their competences for self-management. For health care professionals, acting on these patient preferences and building a solid relationship will enhance successful self-management.

Introduction: Self-management (SM) interventions are complex interventions and one of the main components of high-quality chronic disease care for which the incorporation of the perspectives of patients and their informal caregivers is crucial. We aim to identify, appraise and synthesise the evidence exploring patients’ and caregivers’ perspectives on SM interventions. More precisely, we aim to 1) describe how they value the importance of outcomes of SM interventions, and 2) identify the factors that might impact on acceptability and feasibility of SM interventions based on their preferences and experiences. Methods and analysis: We will conduct four mixed-methods overviews as part of COMPAR-EU, a European Union (EU) funded project aimed to identify the most effective and cost-effective SM interventions for chronic obstructive pulmonary disease (COPD), heart failure (HF), obesity, and type 2 diabetes mellitus (T2DM). We will search in MEDLINE, CINAHL, and PsycINFO for systematic reviews of studies addressing patients’ preferences on outcomes, or their experiences with SM alongside their disease trajectory or with SM interventions, published in English. Selection of studies and data extraction will be conducted in pairs. We will assess the overlap of studies and methodological quality. We will follow a three-step synthesis process: 1) narrative synthesis for quantitative evidence, 2) thematic synthesis for qualitative evidence, and 3) integration of findings in the interpretation phase. Additionally, we will consult on the relevance of findings with patients and their caregivers. Systematic review registration: PROSPERO CRD42019117867

BackgroundA large body of evidence suggests that self-management interventions (SMIs) may improve outcomes in chronic obstructive pulmonary disease (COPD). However, accurate comparisons of the relative effectiveness of SMIs are challenging, partly due to heterogeneity of outcomes across trials and uncertainty about the importance of these outcomes for patients. We aimed to develop a core set of patient-relevant outcomes (COS) for SMIs trials to enhance comparability of interventions and ensure person-centred care.MethodsWe undertook an innovative approach consisting of four interlinked stages: i) Development of an initial catalogue of outcomes from previous EU-funded projects and/or published studies, ii) Scoping review of reviews on patients and caregivers' perspectives to identify outcomes of interest, iii) Two-round Delphi online survey with patients and patient representatives to rate the importance of outcomes, and iv) Face-to-face consensus workshop with patients, patient representatives, health professionals and researchers to develop the COS.ResultsFrom an initial list of 79 potential outcomes, 16 were included in the COS plus one supplementary outcome relevant to all participants. These were related to patient and caregiver knowledge/competence, self-efficacy, patient activation, self-monitoring, adherence, smoking cessation, COPD symptoms, physical activity, sleep quality, caregiver quality of life, activities of daily living, coping with the disease, participation and decision-making, emergency room visits/admissions and cost effectiveness.ConclusionThe development of the COPD COS for the evaluation of SMIs will increase consistency in the measurement and reporting of outcomes across trials. It will also contribute to more personalized health care and more informed health decisions in clinical practice as patients' preferences regarding COPD outcomes are more systematically included.

Introduction Population ageing and increasing chronic illness burden have sparked interest in innovative care models. While self-management interventions (SMIs) are drawing increasing attention, evidence of their efficacy is mostly based on pairwise meta-analysis, generally derived from randomised controlled trials comparing interventions versus a control or no intervention. As such, relevant efficacy data for comparisons among different SMIs that can be applied to specific chronic conditions are missing. Therefore, the relevance of the available evidence for decision-making at clinical, organisational and policy levels is limited.Aim To identify, compare and rank the most effective and cost-effective SMIs for adults with four high-priority chronic conditions: type 2 diabetes, obesity, chronic obstructive pulmonary disease,and heart failure.Methods and analysis All activities will be conducted as part of the cost-effectiveness of self-management interventions in four high-priority chronic conditions in Europe(COMPAR-EU, Comparing effectiveness of self-management interventions in 4 high priority chronic diseases inEurope) Project, an European Union (EU)-funded project designed to bridge the gap between current knowledge and practice on SMIs. In the first phase of the project, we will develop and validate a taxonomy, and a Core Outcome Set for each condition. These activities will inform a series of systematic review and network meta-analysis about the effectiveness of SMIs. We will also perform a cost-effectiveness analysis of the most effective SMIs and an evaluation of contextual factors. We will finally develop tailored decision-making tools for the different relevant stakeholders.Ethics and dissemination Ethical approval was obtained from the local ethics committee (University Institute for Primary Care Research - IDIAP Jordi Gol). All patients and other stakeholders will provide informed consent prior to participation. This project has been funded by the EU Horizon 2020 research and innovation programme (grant agreement no. 754936). Results will be of interest to relevant stakeholder groups (patients, professionals, managers, policymakers and industry), and will be disseminated in a tailored multi-pronged approach that will include deployment of an interactive platform.

Abstract Background Self-management interventions (SMIs) are core components of high-quality care in type 2 diabetes mellitus (T2DM). We aimed to identify and summarise the scientific evidence exploring the perspectives of patients with T2DM and their informal caregivers on outcomes of SMIs, and the key themes to enhance T2DM patient-centred care. Methods We conducted a mixed-methods overview of reviews. We searched MEDLINE, CINAHL and PsycINFO, up to June 2021 for systematic reviews (SRs) exploring the perspectives of adults with T2DM and their informal caregivers, regarding self-management. Two reviewers conducted independently study selection, data extraction and quality assessment. We estimated the degree of overlap across SRs. We performed a qualitative analysis using a thematic synthesis approach. Results We identified 54 SRs, corresponding to 939 studies, with a slight overlap. Most SRs (47/54, 87%) were considered high quality. We developed summaries for 22 outcomes and identified six overarching themes: (1) diabetic identity; (2) accessing healthcare; (3) experience of care; (4) engagement with self-management; (5) outcomes awareness; and (6) challenges adhering to self-management. We found important variability in how patients with T2DM and their informal caregivers value critical outcomes influenced by the disease progression and several contextual factors. Conclusions Our findings represent what matters most to patients with T2DM and their informal caregivers regarding outcomes of SMIs. Our results can facilitate the development and evaluation of SMIs, and guide decision-making in diabetes care, including the formulation of decisions and recommendations.