Implementation and evaluation of a navigation program for people with cancer in old age and their family caregivers: study protocol for the EU NAVIGATE International Pragmatic Randomized Controlled Trial.

Background: Cancer navigation programs aim to support, educate, and empower patients and families, addressing barriers to diagnostics, treatment, and care. Navigators engage with people to ensure timely access to services and resources. While promising for older people with cancer, these programs are scarce in Europe, and research on their effectiveness and implementation is limited.

The provision of bereavement care by general practitioners: data from a sentinel network.

Background: Limited information exists regarding the prevalence of bereavement care provision by general practitioners (GPs) and in what cases they provide this. Insights into the current practice of bereavement care provision by GPs can highlight areas for improvement of the bereavement care practice. Therefore, we examined in how many cases GPs contacted relatives regarding bereavement care, and which case-specific characteristics are associated.

Adapting, implementing and evaluating a navigation intervention for older people with cancer and their family caregivers in six countries in Europe: the Horizon Europe-funded EU NAVIGATE project.

Background: Navigation interventions could support, educate and empower older people with cancer and/or their family caregivers by addressing barriers and ensuring timely access to needed services and resources throughout the continuum of supportive, palliative and end-of-life care.

Objectives: European Union (EU) NAVIGATE is an interdisciplinary and cross-country Horizon Europe-funded project (2022-2027) aiming to evaluate the effectiveness, cost-effectiveness and implementation of a navigation intervention for older people with cancer and their family caregivers in Europe. EU NAVIGATE aims to advance the evidence on cancer patient navigation in Europe.

Patient- vs Physician-Initiated Response to Symptom Monitoring and Health-Related Quality of Life: The SYMPRO-Lung Cluster Randomized Trial.

Importance: Online symptom monitoring through patient-reported outcomes can enhance health-related quality of life and survival. However, widespread adoption in clinical care remains limited due to various barriers including the need to reduce health care practitioners' workload.

Objective: To report the effects of patient-reported outcome (PRO) symptom monitoring on HRQOL and survival up to 1 year after initiation of any treatment in patients with lung cancer.

How end-of-life care was limited during the first 18 months of the COVID-19 pandemic: a longitudinal survey study among healthcare providers (the CO-LIVE study).

Background: During the COVID-19 pandemic, the way in which end-of-life care was provided, underwent a lot of changes and therefor different domains of end-of-life care were impacted. The aim of this study is to describe whether health care providers considered end-of-life care (in medical, nursing, psychosocial and spiritual care) limited by the pandemic through the first 18 months of the COVID-19 pandemic, and examine associations with COVID-19 related circumstances of care (e.g.

Potentially Inappropriate End of Life Care and Healthcare Costs in the Last 30 Days of Life in Regions Providing Integrated Palliative Care in the Netherlands: A Registration-based Study.

Introduction: This study aimed to assess the effect of integrated palliative care (IPC) on potentially inappropriate end- of-life care and healthcare-costs in the last 30 days of life in the Netherlands.

Methods: Nationwide health-insurance claims data were used to assess potentially inappropriate end-of-life care (≥2 emergency room visits; ≥2 hospital admissions; >14 days hospitalization; chemotherapy; ICU admission; hospital death) and healthcare-costs in all deceased adults in IPC regions pre- and post- implementation and in those receiving IPC compared to a 1:2 matched control group.

Results: In regions providing IPC deceased adults (n = 37,468) received significantly less potentially inappropriate end-of-life care post-implementation compared to pre-implementation (26.

Specialized expertise among healthcare professionals in palliative care - A scoping review.

Background: The generalist-plus-specialist palliative care model is endorsed worldwide. In the Netherlands, the competencies and profile of the generalist provider of palliative care has been described on all professional levels in nursing and medicine. However, there is no clear description of what specialized expertise in palliative care entails, whereas this is important in order for generalists to know who they can consult in complex palliative care situations and for timely referral of patients to palliative care specialists.

Distress among healthcare providers who provided end-of-life care during the COVID-19 pandemic: a longitudinal survey study (the CO-LIVE study).

Introduction: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider's characteristics and care circumstances related to COVID-19 are associated with distress.

Methods: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months.

Generalist, specialist, or expert in palliative care? A cross-sectional open survey on healthcare professionals' self-description.

Background: In the Netherlands, palliative care is provided by generalist healthcare professionals (HCPs) if possible and by palliative care specialists if necessary. However, it still needs to be clarified what specialist expertise entails, what specialized care consists of, and which training or work experience is needed to become a palliative care specialist. In addition to generalists and specialists, 'experts' in palliative care are recognized within the nursing and medical professions, but it is unclear how these three roles relate.

Communication about euthanasia in Dutch nursing homes.

In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future.

Experiences with and needs for aftercare following the death of a loved one in the ICU: a mixed-methods study among bereaved relatives.

Background: Bereaved relatives of intensive care unit (ICU) patients are at increased risk of psychological complaints. Aftercare might help them cope with processing the ICU admission and their loved one's death. There is little (qualitative) evidence on how bereaved relatives experience aftercare.

Varying (preferred) levels of involvement in treatment decision-making in the intensive care unit before and during the COVID-19 pandemic: a mixed-methods study among relatives.

Background: In the intensive care unit (ICU) relatives play a crucial role as surrogate decision-makers, since most patients cannot communicate due to their illness and treatment. Their level of involvement in decision-making can affect their psychological well-being. During the COVID-19 pandemic, relatives' involvement probably changed.

Patients Who Seek to Hasten Death by Voluntarily Stopping Eating and Drinking: A Qualitative Study.

Purpose: Voluntary stopping of eating and drinking (VSED) is a controversial method to hasten death. Little is known about why and how people come to VSED. This study assessed patients' motives, how patients decide on VSED, and the ways in which they prepare for VSED and involve others.

Quality of life after patient-initiated vs physician-initiated response to symptom monitoring: the SYMPRO-Lung trial.

Background: Previous studies using patient-reported outcomes measures (PROMs) to monitor symptoms during and after (lung) cancer treatment used alerts that were sent to the health-care provider, although an approach in which patients receive alerts could be more clinically feasible. The primary aim of this study was to compare the effect of weekly PROM symptom monitoring via a reactive approach (patient receives alert) or active approach (health-care provider receives alert) with care as usual on health-related quality of life (HRQOL) at 15 weeks after start of treatment in lung cancer patients.

Methods: The SYMPRO-Lung trial is a multicenter randomized controlled trial using a stepped wedge design.

Advance Care Planning in Huntington Disease: The Elderly Care Physician's Perspective.

Objective: Huntington disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP).

Support for relatives in the intensive care unit: lessons from a cross-sectional multicentre cohort study during the COVID-19 pandemic.

Background: Support for relatives is highly important in the intensive care unit (ICU). During the first COVID-19 wave  support for relatives had to be changed considerably. The alternative support could have decreased the quality and sense of support.

End-of-life treatment preference discussions between older people and their physician before and during the COVID-19 pandemic: cross sectional and longitudinal analyses from the Longitudinal Aging Study Amsterdam.

Background: COVID-19 could lead to hospitalisation and ICU admission, especially in older adults. Therefore, during the pandemic, it became more important to discuss wishes and preferences, such as older peoples' desire for intensive treatment in a hospital in acute situations, or not. This study explores what percentage of Dutch older people aged 75 and over discussed Advance Care Planning (ACP) topics with a physician during the first months of the COVID-19 pandemic and whether this was different in these people before the COVID-19 pandemic.

Nursing home residents with Huntington's disease: Heterogeneity in characteristics and functioning.

Background: In Huntington's disease (HD), admission to a nursing home (NH) is required in advanced disease stages. To gain insight in care needs, more knowledge is needed on the functioning of this group.

Objective: Describing patient and disease characteristics, their functioning, and gender differences.

Awareness and Actual Knowledge of Palliative Care Among Older People: A Dutch National Survey.

Context: Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has been conducted on (the relationship between) awareness and actual knowledge of palliative care.

Objectives: To determine awareness and actual knowledge of palliative care and explore factors that contribute to knowledge of palliative care among older people.

Impact of COVID-19 on care at the end of life during the first months of the pandemic from the perspective of healthcare professionals from different settings: a qualitative interview study (the CO-LIVE study).

Objectives: The objective of this study is to better understand how the COVID-19 outbreak impacted the different domains of the palliative care approach to end-of-life care from the perspective of healthcare professionals (HCPs) from different professions, working in different settings during the first months of the COVID-19 outbreak in the Netherlands.

Methods: An in-depth qualitative interview study among 16 HCPs of patients who died between March and July 2020 in different healthcare settings in the Netherlands. The HCPs were recruited through an online survey about end-of-life care.

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

Context: Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans.

Objectives: To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions.