Understanding healthcare communication in age-related macular degeneration care: A mixed-methods review of patients' perspectives.

Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients' experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.

Appropriateness of strategy comparisons in cost-effectiveness analyses of infant pneumococcal vaccination: a systematic review.

OBJECTIVES: Cost-effectiveness analysis (CEA) is the standard framework for informing the efficient allocation of scarce healthcare resources. The importance of considering all relevant intervention strategies and appropriate incremental comparisons have both long been recognized in CEA. Failure to apply methods correctly can lead to suboptimal policies. Our objective is to assess if CEAs of infant pneumococcal vaccination apply appropriate methods with respect to the completeness of strategies assessed and incremental comparisons between them. METHODS: We conducted a systematic search of the PubMed, Scopus, Embase, and Web of Science databases and performed a comparative analysis of the retrieved pneumococcal vaccination CEAs. We checked the appropriateness of the incremental analyses by attempting to replicate the published incremental cost-effectiveness (CE) ratios from the reported costs and health effects. RESULTS: Our search returned twenty-nine eligible articles. Most studies failed to recognize one or more intervention strategies (n = 21). Incremental comparisons were questionable in four CEAs and insufficient reporting of cost and health effect estimates was identified in three studies. Overall, we only found four studies that made appropriate comparisons between all strategies. Lastly, study findings appear to be strongly associated with manufacturer sponsorship. CONCLUSIONS: We found considerable scope for improvement regarding strategy comparison in the infant pneumococcal vaccination literature. To prevent overestimation of the CE of new vaccines, we urge greater adherence to existing guidelines recommending that all available strategies are evaluated to capture relevant comparators for CE evaluation. Closer adherence to existing guidelines will generate better evidence, leading to more effective vaccination policies.

Patients' and health professionals' views on shared decision-making in age-related macular degeneration care: A qualitative study.

BACKGROUND: Age-related macular degeneration (AMD) is one of the principal causes of irreversible visual impairment in the older adult population. Recent evidence indicates that there are signs of undertreatment and overtreatment, underdiagnosis and insufficient information provision in AMD care. Shared decision-making (SDM) can aid information sharing between patients and health professionals and enhances high-quality care. This research aimed to gain insight into patients' and professionals' views on SDM in AMD care. METHODS: Semi-structured interviews were conducted with 20 patients with AMD and 19 health professionals in June and July 2020. Participants were recruited through hospitals, professional and patient associations and (social) networks. Sample representativeness was ensured in terms of sociodemographic and disease characteristics for patients, and profession-related characteristics for health professionals. Interviews were analysed according to a predetermined coding framework. RESULTS: Although SDM is receiving attention in AMD care, health professionals and patients experienced barriers in making shared decisions. The most common barriers reported included limitations in treatment options, time constraints, strict treatment guidelines and patients' comorbidity. Furthermore, most patients indicated that they were not (fully) informed about all aspects of AMD trajectory, such as the possibility to discontinue therapy or the long-term and invasive character of treatment. Some patients expressed the need for a more empathic and person-centred communication style from their health professional. CONCLUSION: The concerns raised by patients and health professionals suggest that there is room for improvement in delivery of SDM in AMD care. Findings from this study indicate that information provision and communication can be improved.

[Positive assessment of care has changed little during the COVID-19 pandemic, but there is still room for improvement]. / Positieve beoordeling van de zorg weinig veranderd tijdens de coronapandemie, maar nog altijd ruimte voor verbetering.

Introduction: Measuring patient experiences provides important insight into the quality of Dutch healthcare. The current research shows how quality of care has changed over the years and how it correlates with changes in healthcare and health during the COVID-19-pandemic. Method: Patient experiences were collected using satisfaction ratings and the quality indicator PREM Chronic Care, among a representative group of people with a chronic disease. Trend analyses with repeated measurements (2016-2020) were performed and differences between subgroups were tested with Mann-Whitney U tests. Results: Quality of care ratings are mainly positive, also during the COVID-19-pandemic in autumn of 2020. In that year, people are the least satisfied with the coordination between healthcare providers and with preventive healthcare of their illness (64% and 67% is satisfied respectively). Trend analyses show that satisfaction with preventive healthcare has declined and satisfaction with shared decision-making has fluctuated over the years. People who experience consequences for their health(care) during the COVID-19-pandemic, are less satisfied with different aspects of healthcare quality than those who experience no consequences. Conclusion: It seems important to pay attention to patient experiences about healthcare processes, with emphasis on additional information for prevention, support for changes in health and treatment during the COVID-19-pandemic, and good coordination between healthcare providers.

Self-management of social well-being in a cross-sectional study among community-dwelling older adults: The added value of digital participation.

BACKGROUND: This study aimed to examine associations between self-management abilities and digital participation among community-dwelling older adults with chronic conditions in the Netherlands. METHODS: The study utilized a cross-sectional design. Community-dwelling older adults were sampled from a Dutch nationwide panel study performed in October and November of 2019. We selected all adults of 65 years and above who had one or more chronic diseases (n = 1,656). Self-management was measured by six abilities (e.g., investing in resources for long-term benefits and taking care of a variety of resources), whereas digital participation was estimated with the frequency of four social internet uses (e.g., using social network websites and calling digitally). RESULTS: When predicting self-management abilities from digital participation, hierarchical multiple regression analysis determined statistically significant and positive relationships, in particular for e-mailing (ß = 0.21; p < .001) and meeting new people online (ß = 0.07; p < .05). Correlation analyses showed that highest associations were found between internet usage and the self-management abilities 'taking initiative' (r = .23; p < .001) and 'being self-efficacious' (r = .21; p < .001). Moreover, the study confirmed that higher age (ß = -0.13; p < .001) and increased severity of disability (ß = -0.12; p < .01) negatively impact abilities for self-management. CONCLUSIONS: These findings suggest that internet usage and self-management abilities are positively related in the older adult population. Further research should be undertaken to examine the links between self-management abilities and digital participation more closely.

Parental perspectives on retention and secondary use of neonatal dried bloodspots: a Dutch mixed methods study.

BACKGROUND: Neonatal bloodspot screening (NBS) identifies conditions to offer early intervention and minimize irreversible damage. NBS policies guide a comprehensive system including processes for storage of neonatal dried blood spots (NDBS). NDBS retention and secondary use policies have been subject of public debates internationally, suggesting that the public's perceptions of NDBS policy are not always on par with existing policies. The current study aims to provide insight in relevant factors for new parents in the Netherlands regarding retention and secondary use of NDBS. These factors can be taken into account when developing or updating NDBS policies. METHODS: A mixed methods design was used combining an online survey (n = 753), focus groups (6 groups, 37 participants), and individual in-depth interviews (n = 7). The discussed topics included: parental information, obtaining informed consent, support for retention, and support for secondary use. The study population consisted of Dutch-speaking new parents: pregnant women (≥20 weeks) and/or their partner, and parents of at least one child (≤5 years). RESULTS: New parents expressed needs for easily accessible information, adequate communication on the retention and (potential) use of NDBS, clearly described safeguards for privacy, a more active consent process, regulation for the actors conducting NDBS research, and parental involvement in decisions on secondary use. Overall, participants were positive about prolonged retention and different types of secondary use if those needs were met. CONCLUSIONS: While parental involvement is a challenge, our study is an example of gauging parent's perspectives on NDBS policy and contributes to including these perspectives in the current policy discussion on longer retention. Prolonged retention could be a feasible option in the Netherlands if several prerequisites are met. Therefore, implementation studies involving parents are needed.

Student nurses' attitudes to social justice and poverty: An international comparison.

BACKGROUND: In both the United Kingdom (UK) and the United States (US), health inequities are proving resistant to improvement. Nurses are ideally placed to advocate for social justice. It is therefore important that nurse education encourages awareness of the social determinants of health and equips students to act to address health inequity. However, little is known about student nurses' attitudes to social justice and poverty and the impact of pedagogical strategies used to teach the determinants and patterns of health inequities. OBJECTIVES: To assess and compare UK and US student nurses' attitudes towards social justice and poverty before and after learning about social determinants of health and health inequities. DESIGN: Cross-sectional study with embedded before and after design using validated measures. SETTING: Two universities: one urban UK university and one US university with urban and rural campuses. PARTICIPANTS: 230 student nurses in the UK (n = 143) and US (n = 87) enrolled in courses teaching content including health inequities and social determinants of health. RESULTS: Student nurses generally disagreed with stigmatizing statements about people living in poverty and mostly agreed with statements promoting social justice. However, US students were significantly more likely to have positive attitudes towards both social justice (p = 0.001) and poverty (p < 0.001). In multiple regression analyses, engagement in social justice-promoting activities, activism and higher levels of education were associated with positive attitudes to social justice and poverty. Statistically significant positive changes in attitudes to poverty and social justice after their courses were observed only among US student nurses. CONCLUSION: UK and US student nurses' attitudes to poverty and social justice were generally positive. Education around social determinants of health and health inequity had a different effect in the UK and the US. There is a need to explore further what specific components of educational programmes lead to positive changes in attitudes.