Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study.

BACKGROUND: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. METHODS: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. RESULTS: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). CONCLUSION: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. TRIAL REGISTRATION: NCT04678310. Registered 21/12/2020.

Self-efficacy of advanced cancer patients for participation in treatment-related decision-making in six European countries: the ACTION study.

PURPOSE: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients' coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer. METHODS: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores. RESULTS: The sample included 660 patients with a mean age of 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.41 (95% CI 0.77 to 2.06)), better quality of life (B 2.34 (95% CI 0.89 to 3.80)), and more patient satisfaction (B 7.59 (95% CI 5.61 to 9.56)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 7.85 (95% CI 2.28 to 13.42)), whereas Italian patients had a lower level ((B -7.50 (95% CI -13.04 to -1.96)) than those in Belgium. CONCLUSION: Coping style, quality of life, and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes.

Dying in times of COVID-19: Experiences in different care settings - An online questionnaire study among bereaved relatives (the CO-LIVE study).

BACKGROUND: The COVID-19 pandemic and restricting measures have affected end-of-life care across different settings. AIM: To compare experiences of bereaved relatives with end-of-life care for a family member or friend who died at home, in a hospital, nursing home or hospice during the pandemic. DESIGN: An open observational online survey was developed and disseminated via social media and public fora (March-July 2020). Data were analyzed using descriptive statistics and logistic regression analyses. PARTICIPANTS: Individuals who lost a family member or friend in the Netherlands during the COVID-19 pandemic. RESULTS: The questionnaire was filled out by 393 bereaved relatives who lost a family member or friend at home (n = 68), in a hospital (n = 114), nursing home (n = 176) or hospice (n = 35). Bereaved relatives of patients who died in a hospital most often evaluated medical care (79%) as sufficient, whereas medical care (54.5%) was least often evaluated as sufficient in nursing homes. Emotional support for relatives was most often evaluated as sufficient at home (67.7%) and least often in nursing homes (40.3%). Sufficient emotional support for relatives was associated with a higher likelihood to rate the place of death as appropriate. Bereaved relatives of patients who died at a place other than home and whose care was restricted due to COVID-19 were less likely to evaluate the place of death as appropriate. CONCLUSION: End-of-life care during the COVID-19 pandemic was evaluated least favourably in nursing homes. The quality of emotional support for relatives and whether care was restricted or not were important for assessing the place of death as appropriate.

Adherence to dietary guidelines and cognitive decline from middle age: the Doetinchem Cohort Study.

BACKGROUND: Diet, in particular the Mediterranean diet, has been associated with better cognitive function and less cognitive decline in older populations. OBJECTIVES: To quantify associations of a healthy diet, defined by adherence to either the Mediterranean diet, the WHO guidelines, or Dutch Health Council dietary guidelines, with cognitive function and cognitive decline from middle age into old age. METHODS: From the Doetinchem Cohort Study, a large population-based longitudinal study, 3644 participants (51% females) aged 45-75 y at baseline, were included. Global cognitive function, memory, processing speed, and cognitive flexibility were assessed at 5-y time intervals up to 20-y follow-up. Adherence to the Mediterranean diet was measured with the modified Mediterranean Diet Score (mMDS), adherence to the WHO dietary guidelines with the Healthy Diet Indicator (HDI), and adherence to the Dutch Health Council dietary guidelines 2015 with the modified Dutch Healthy Diet 2015 index (mDHD15-index). The scores on the dietary indices were classified in tertiles (low, medium, high adherence). Linear mixed models were used to model level and change in cognitive function by adherence to healthy diets. RESULTS: The highest tertiles of the mMDS, HDI, and mDHD15-index were associated with better cognitive function compared with the lowest tertiles (P values <0.01), for instance at age 65 y equal to being 2 y cognitively younger in global cognition. In addition, compared with the lowest tertiles, the highest tertiles of the mMDS, HDI, and mDHD15-index were statistically significantly associated with 6-7% slower global cognitive decline from age 55 to 75 y, but also slower decline in processing speed (for mMDS: 10%; 95% CI: 2, 18%; for mDHD15: 12%; 95% CI: 6, 21%) and cognitive flexibility (for mDHD15: 10%; 95% CI: 4, 18%). CONCLUSIONS: Healthier dietary habits, determined by higher adherence to dietary guidelines, are associated with better cognitive function and slower cognitive decline with aging from middle age onwards.

The influence of chronic diseases and multimorbidity on entering paid employment among unemployed persons - a longitudinal register-based study.

Objectives This study aimed to investigate the influence of chronic diseases and multimorbidity on entering paid employment among unemployed persons. A secondary objective was to estimate the proportion of persons not entering paid employment that can be attributed to specific chronic diseases across different age groups. Methods Data linkage of longitudinal nationwide registries on employment status, medication use and socio-demographic characteristics was applied. Unemployed Dutch persons (N=619 968) were selected for a three-year prospective study. Cox proportional hazards analyses with hazard ratios (HR) were used to investigate the influence of six common chronic diseases on entering paid employment, stratified by age. The population attributable fraction (PAF) was calculated as the proportion of all persons who did not enter paid employment that can be attributed to a chronic disease. Results Persons with chronic diseases were less likely to enter paid employment among all age groups. The impact of a chronic disease on maintaining unemployment at population level was largest for common mental disorders (PAF 0.20), due to a high prevalence of common mental disorders (6%), and for psychotic disorders (PAF 0.19), due to a high likelihood of not entering paid employment (HR 0.21), among persons aged 45-55 years. Multimorbidity increased with age, and the impact of having multiple chronic diseases on remaining unemployed increased especially among persons aged ≥45 years. Conclusion Chronic diseases and multimorbidity are important factors that reduce employment chances among all age groups. Our results provide directions for policy measures to target specific age and disease groups of unemployed persons in order to improve employment opportunities.

Chronic diseases and multimorbidity among unemployed and employed persons in the Netherlands: a register-based cross-sectional study.

OBJECTIVES: The first objective of this study was to describe the age-specific prevalence of chronic diseases and multimorbidity among unemployed and employed persons. The second objective was to examine associations of employment status and sociodemographic characteristics with chronic diseases and multimorbidity. DESIGN: Data linkage of cross-sectional nationwide registries on employment status, medication use and sociodemographic characteristics in 2016 was applied. SETTING: Register-based data covering residents in the Netherlands. PARTICIPANTS: 5 074 227 persons aged 18-65 years were selected with information on employment status, medication use and sociodemographic characteristics. OUTCOME MEASURES: Multiple logistic regression analysis and descriptive statistics were performed to examine associations of employment and sociodemographic characteristics with the prevalence of chronic diseases and multimorbidity. The age-specific prevalence of six common chronic diseases was described, and Venn diagrams were applied for multimorbidity among unemployed and employed persons. RESULTS: Unemployed persons had a higher prevalence of psychological disorders (18.3% vs 5.4%), cardiovascular diseases (20.1% vs 8.9%), inflammatory diseases (24.5% vs 15.8%) and respiratory diseases (11.7% vs 6.5%) than employed persons. Unemployed persons were more likely to have one (OR 1.30 (1.29-1.31)), two (OR 1.74 (1.73-1.76)) and at least three chronic diseases (OR 2.59 (2.56-2.61)) than employed persons. Among unemployed persons, psychological disorders and inflammatory conditions increased with age but declined from middle age onwards, whereas a slight increase was observed among employed persons. Older persons, women, lower educated persons and migrants were more likely to have chronic diseases. CONCLUSION: Large differences exist in the prevalence of chronic diseases and multimorbidity among unemployed and employed persons. The age-specific prevalence follows a different pattern among employed and unemployed persons, with a relatively high prevalence of psychological disorders and inflammatory conditions among middle-aged unemployed persons. Policy measures should focus more on promoting employment among unemployed persons with chronic diseases.