Patient-centred care is tailored to the needs of patients and is necessary for better health outcomes, especially for individuals with limited health literacy (LHL). However, its implementation remains challenging. The key to effectively address patient-centred care is to include perspectives of patients with LHL within the curricula of (future) healthcare providers (HCP). This systematic review aimed to explore and synthesize evidence on the needs, experiences and preferences of patients with LHL and to inform an existing educational framework. We searched three databases: PsychInfo, Medline and Cinahl, and extracted 798 articles. One-hundred and three articles met the inclusion criteria. After data extraction and thematic synthesis, key themes were identified. Patients with LHL and chronic diseases encounter multiple problems in the care process, which are often related to a lack of person-centeredness. Patient perspectives were categorized into four key themes: (1) Support system; (2) Patient self-management; (3) Capacities of HCPs; (4) Barriers in healthcare systems. “Cultural sensitivity” and “eHealth” were identified as recurring themes. A set of learning outcomes for (future) HCPs was developed based on our findings. The perspectives of patients with LHL provided valuable input for a comprehensive and person-centred educational framework that can enhance the relevance and quality of education for (future) HCPs, and contribute to better person-centred care for patients with LHL.

Background Patient-reported outcome measures (PROMs) are used in health technology assessment (HTA) to measure patient experiences with disease and treatment, allowing a deeper understanding of treatment impact beyond clinical endpoints. Developing and administering PROMs for rare diseases poses unique challenges because of small patient populations, disease heterogeneity, lack of natural history knowledge, and short-term studies. Objective This research aims to identify key factors to consider when using different types of PROMs in HTA for rare disease treatments (RDTs). Methods A scoping review of scientific and grey literature was conducted, with no date or publication type restrictions. Information on the advantages of and the challenges and potential solutions when using different types of PROMs for RDTs, including psychometric properties, was extracted and synthesized. Results Of 79 records from PubMed, 32 were included, plus 12 records from the grey literature. PROMs for rare diseases face potential data collection and psychometric challenges resulting from small patient populations and disease heterogeneity. Generic PROMs are comparable across diseases but not sensitive to disease specificities. Disease-specific instruments are sensitive but do not exist for many rare diseases and rarely provide the utility values required by some HTA bodies. Creating new PROMs is time and resource intensive. Potential solutions include pooling data (multi-site/international data collection), using computer-assisted technology, or using generic and disease-specific PROMs in a complementary way. Conclusions PROMs are relevant in HTA for RDTs but pose a number of difficulties. A deeper understanding of the potential advantages of and the challenges and potential solutions for each can help manage these difficulties.

Avoiding the potential negative impact brought by problematic internet use is becoming more important. To better understand public health and addiction, this study investigated to what extent work-time and leisure-time internet use relate to problematic internet use and perceived quality of life among college students and highly educated adults. An online cross-sectional survey with 446 individuals was assessed in Germany. Linear regression analyses were used to predict problematic internet use. Ordinal regression analyses were applied to predict perceived quality of life. Results showed that leisure-time internet use, but not work-time internet use, was positively associated with problematic internet use. Participants whose work-time internet use could be considered balanced (5–28 h/week in this study) indicated a higher perceived quality of life compared to individuals with little or large amount of internet use for work. The findings still emerged when taking negative feelings, perceived stress, smoking status and alcohol consumption into account. As both work-time and leisure-time internet use can be risk factors for mental health in terms of problematic internet use and perceived quality of life, well-controlled internet use rather than excessive use is recommended. This should be kept in mind when dealing with the Coronavirus pandemic and its aftermath.

BACKGROUND There is increasing recognition that conventional appraisal approaches may be unsuitable for assessing the value for money of rare disease treatments (RDTs). This research examines whether supplemental appraisal processes for RDTs are needed, and if so, what form should these take. A qualitative research design was used that included (1) documentation of country appraisal/reimbursement processes for RDTs via questionnaires, desk research and iterative interactions with country experts to produce country vignettes, and (2) a cross-country analysis of these processes to identify and characterise countries with supplemental processes for RDTs, and compare them to countries without supplemental processes. RESULTS Thirty-two of the 37 invited countries participated in this research. Forty-one percent (13/32) use supplemental processes for RDTs. Their level of integration within standard processes ranged from low to high, characterised by whether they are separate or partially separate from the standard process, adapted or accelerated standard processes, or standard processes that account for rarity. They are characterised by features implemented throughout the appraisal process. These features are mechanisms that allow application of different standards to assess the value of the medicine, support to the appraisal/decision-making process, overcome the issues of lack of cost-effectiveness, or exempt from part of/the full HTA process. They apply to ultra-RDTs and/or RDTs, and are often combined. They increase the likelihood of reimbursement by adjusting and/or foregoing part of the assessment process, or accepting to pay more for the same added benefit as for common conditions, which is likely to lead to accepting high prices. A large proportion of countries with standard processes include one or more of these features (formally or informally) or are discussing potential changes in their systems. CONCLUSIONS Results suggest revealed preferences to treat RDTs differently than conventional medicines. Some of the challenges around uncertainty and high price remain, but supplemental process features allow for more adapted and consistent decision-making. Many of these processes are new and countries continue to adjust as they gain experience. These results do not outline what an ideal process for RDTs looks like, but identify some key features that can be implemented to facilitate this process.

Background: Effective interventions to enhance adherence to self-care recommendations in patients with heart failure have immense potential to improve health and wellbeing. However, there is substantial inconsistency in the effectiveness of existing self-management interventions, partly because they lack theoretical models underpinning intervention development. Aim: To outline how the capability, opportunity and motivation behaviour model has been applied to guide the development of a theory-based intervention aiming to improve adherence to heart failure self-care recommendations. Methods: The application of the capability, opportunity and motivation behaviour model involved three steps: (a) identification of barriers and facilitators to heart failure self-care from two comprehensive meta-studies; (b) identification of appropriate behaviour change techniques to improve heart failure self-care; and (c) involvement of experts to reduce and refine potential behaviour change techniques further. Results: A total of 119 barriers and facilitators were identified. Fifty-six behaviour change techniques remained after applying three steps of the behaviour model for designing interventions. Expert involvement ( n=39, of which 31 were patients (67% men; 45% New York Heart Association II)) further reduced and refined potential behaviour change techniques. Experts disliked some behaviour change techniques such as ‘anticipated regret’ and ‘salience of consequences’. This process resulted in a final comprehensive list consisting of 28 barriers and 49 appropriate behaviour change techniques potentially enhancing self-care that was put forward for further use. Conclusion: The application of the capability, opportunity and motivation behaviour model facilitated identifying important factors influencing adherence to heart failure self-care recommendations. The model served as a comprehensive guide for the selection and design of interventions for improving heart failure self-care adherence. The capability, opportunity and motivation behaviour model enabled the connection of heart failure self-care barriers to particular behaviour change techniques to be used in practice.