BackgroundIn the Netherlands, ethnic minority populations visit their general practitioner (GP) more often than the indigenous population. An explanation for this association is lacking. Recently, health literacy is suggested as a possible explaining mechanism. Internationally, associations between health literacy and health care use, and between ethnicity and health literacy have been studied separately, but, so far, have not been linked to each other. In the Netherlands, some expectations have been expressed with regard to supposed low health literacy of ethnic minority groups, however, no empirical study has been done so far. The objectives of this study are therefore to acquire insight into the level of health literacy of ethnic minorities in the Netherlands and to examine whether the relationship between ethnicity and health care use can be (partly) explained by health literacy.MethodsA questionnaire was sent to a sample of 2.116 members of the Dutch Health Care Consumer Panel (response rate 46%, 89 respondents of non-western origin). Health literacy was measured with the Health Literacy Questionnaire (HLQ) which covers nine different domains. The health literacy levels of ethnic minority groups were compared to the indigenous population. A negative binomial regression model was used to estimate the association between ethnicity and GP visits. To examine whether health literacy is an explaining factor in this association, health literacy and interaction terms of health literacy and ethnicity were added into the model.ResultsDifferences in levels of health literacy were only found between the Turkish population and the indigenous Dutch population. This study also found an association between ethnicity and GP visits. Ethnic minorities visit their GP 33% more often than the indigenous population. Three domains of the HLQ (the ability to navigate the health care system, the ability to find information and to read and understand health information) partly explained the association between ethnicity and GP visits.ConclusionsIn general, there are no differences in health literacy between most of the ethnic minority groups in the Netherlands and the indigenous Dutch population. Only the Turkish population scored significantly lower on several health literacy domains. Some domains of health literacy do explain the association between ethnicity and higher frequency of GP visits. Further research is recommended to understand the pathways through which health literacy impacts health care use.
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.
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.
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.
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.
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