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The MOBILISE project examines why some people respond to discontent by protesting, others by migrating while yet others stay immobile. It focuses Ukraine, Poland, Morocco and Argentina and migrants from these countries who live in Germany, the United Kingdom and Spain. The first part of this paper reports on the second wave of the panel survey among migrants from Argentina, Poland and Ukraine, and the national population of Argentina and Ukraine. Across target groups, 12 to 21 per cent of wave one respondents completed the second wave.. This is higher than might be expected in the absence of interviewer encouragement or material incentives. Analyses of the results suggest attrition bias on age, education and political interest, but these are modest in size. There is no evidence of attrition bias on Facebook use or migration aspiration. The second part of the paper presents the set-up and results of an online survey among migrants from and nationals in Poland in early 2021. The paper compares the results of the migrant surveys in 2019 and 2021 to find that the composition of the samples obtained are very similar, though the cost per respondent in 2021 was considerably higher. The latter is mostly likely a result of a higher ad budget. The online national sample is higher educated, more interested in politics, more active on Facebook, less often supportive of the ruling party and more often aspires to migrate than the face-to-face sample. This mostly replicates the pattern we found in earlier analyses of the Argentinian and Ukrainian online and face-to-face national surveys. more...

IntroductionIn past years, the urgency of putting people in the centre of health care research has clearly been established in the public discourse. However, the depth of patient inclusion is still limited. In our COMPAR-EU project (Horizon 2020) we aim to move forward by investigating effectiveness of self-management interventions (SMIs) through the lens of the patients themselves. We do so developing of core outcome sets (COS) for SMIs for adults living with type 2 diabetes, obesity, heart failure or COPD. We now go one step further by reviewing if and how the RCTs on SMIs are reporting on those outcomes, with a focus on which patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) are being used.MethodsAfter developing our COS we searched Pubmed, Embase, Cinahl, PsycINFO and Cochrane for RCTs on SMIs for people of 18 years and older living with TYPE 2 DIABETES, COPD, HEART FAILURE and Obesity. Articles and abstracts were screened by two independent reviewers and information extracted for, among other, outcomes (guided by the four COSs) and the PREM and PROM instruments used. We analysed whether all outcomes included in our COS were measured in the literature and the variability and concentration in the use of specific PREMs and PROMs for each outcome and disease.ResultsPREMs and PROMs where both highlighted by patients as being important. For type 2 diabetes we reviewed 697 RCTs on SMIs, which used PROMs for 17 of the 23 outcomes in our COS (some were not susceptible to be measured by PROM/PREM or they were not reported in the literature). For obesity, we reviewed 517 RCTs on SMIs, which used PROMs for the 10 of the 15 outcomes included in our COS.For heart failure we reviewed 288 RCTs on SMIs, which used PROMs for the 19 outcomes in our COS.For COPD we reviewed 252 RCTs on SMIs, which used PROMs for the 10 outcomes in our COS.PREMs were less used in the literature.DiscussionsOur research confirms that the use of PROMs, is extensive, but some outcomes relevant to patients are still not regularly included in effectiveness research, specially those related to experiences of care (PREMs).ConclusionsThere are significant advances in the use of PROMs, the use of PREMs is still more limited in self-management research. Lessons learnedThe way in which research measures effectiveness often is mismatched with patient preferences. Our COMPAR-EU COS for type 2 diabetes, obesity, heart failure and COPD, and literature review can help align research with patient preferences.LimitationsAs any literature review, ours could face limitations in search and extraction and our participatory process due to the small sample of patient and other stakeholders. Several mitigation strategies have been applied. Suggestions for future researchWe suggest expanding the measure of the relevant outcomes to patients in effectiveness research, and the specific PREM and PROM instruments to do so, therefore facilitating comparability. more...

Self-management interventions (SMIs) may improve outcomes in Chronic Obstructive Pulmonary Disease (COPD). However, accurate comparisons of their relative effectiveness are challenging, partly due to a lack of clarity and detail regarding the intervention content being evaluated. This study systematically describes intervention components and characteristics in randomized controlled trials (RCTs) related to COPD self-management using the COMPAR-EU taxonomy as a framework, identifying components that are insufficiently incorporated into the design of the intervention or insufficiently reported. Overall, 235 RCTs published between 2010 and 2018, from a systematic review were coded using the taxonomy, which includes 132 components across four domains: intervention characteristics, expected patient (or caregiver) self-management behaviours, patient relevant outcomes, and target population characteristics. Risk of bias was also assessed. Interventions mainly focused on physical activity (67.4%), and condition-specific behaviours like breathing exercise (63.5%), self-monitoring (50.8%), and medication use (33.9%). Support techniques like education and skills-training, self-monitoring, and goal setting (over 35% of the RCTs) were mostly used for this. Emotional-based techniques, problem-solving, and shared decision-making were less frequently reported (less than 15% of the studies). Numerous SMIs components were insufficiently incorporated into the design of COPD SMIs or insufficiently reported. Characteristics like mode of delivery, intensity, location, and providers involved were often not described. Only 8% of the interventions were tailored to the target population’s characteristics. Outcomes that are considered important by patients were hardly taken into account. There is still a lot to improve in both the design and description of SMIs for COPD. Using a framework such as the COMPAR-EU SMI taxonomy may contribute to better reporting and to better informing of replication efforts. In addition, prospective use of the taxonomy for developing and reporting intervention content would further aid in building a cumulative science of effective SMIs in COPD. more...

Objectives Self-management of chronic diseases is rather complex, especially for patients with limited health literacy. In this review, we aim to disentangle the specific difficulties patients with limited health literacy face in relation to self-management and their associated needs with respect to self-management support. Methods We performed a literature search in five databases. We used a broad definition of health literacy and self-management was categorized into four types of activities: medical management, changing lifestyle, communicating and navigating through the health care system and coping. Included reviews described the relationship between health literacy and different domains of self-management and were published after 2010. Results A total of 28 reviews were included. Some clear difficulties of patients with limited health literacy emerged, predominantly in the area of medical management (especially adherence), communication and knowledge. Other associations between health literacy and self-management were inconclusive. Barriers from the patients’ perspective described mainly medical management and the communication and navigation of the health care system. Discussion Patients with limited health literacy experience difficulties with specific domains of self-management. For a better understanding of the relationship between health literacy and self-management, a broader conceptualization of health literacy is warranted, including both cognitive and behavioural aspects. more...

Self-management interventions (SMIs) can improve the life of patients living with obesity. However, there is variability in the outcomes used to assess the effectiveness of SMIs and these are often not relevant for patients. In the context of COMPAR-EU, our aim was to develop a core outcome set (COS) for the evaluation of SMIs for patients with obesity. We followed a four steps multimethod approach: (1) the development of the initial catalogue of outcomes; (2) a scoping review of reviews on patients' values and preferences on outcomes of self-management (SM); (3) a Delphi survey including patients and patient representatives to rate the importance of outcomes; and (4) a 2-day consensus workshop with patients, patient representatives, healthcare professionals and researchers. The initial catalogue included 82 outcomes. Ten patients and patient's representatives participated in the Delphi survey. We identified 16 themes through the thematic synthesis of the scoping review that informed 37.80% of the outcomes on initial catalogue. Five patients, five healthcare professionals, and four researchers participated in the consensus workshop. After the consensus process, 15 outcomes were selected to be part of the final COS, and five supplementary outcomes were also provided. We developed a COS for the evaluation of SMIs in obesity with a significant involvement of patients and other key stakeholders. This COS will help improving data synthesis and increasing the value of SM research data in healthcare decision making. more...