Reusing routine electronic health record data for nationwide COVID-19 surveillance in nursing homes: barriers, facilitators, and lessons learned.

Background: At the beginning of the COVID-19 pandemic in 2020, little was known about the spread of COVID-19 in Dutch nursing homes while older people were particularly at risk of severe symptoms. Therefore, attempts were made to develop a nationwide COVID-19 repository based on routinely recorded data in the electronic health records (EHRs) of nursing home residents. This study aims to describe the facilitators and barriers encountered during the development of the repository and the lessons learned regarding the reuse of EHR data for surveillance and research purposes.

Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review.

Background: Scientific researchers who wish to reuse health data pertaining to individuals can obtain consent through an opt-in procedure or opt-out procedure. The choice of procedure may have consequences for the consent rate and representativeness of the study sample and the quality of the research, but these consequences are not well known.

Objective: This review aimed to provide insight into the consequences for the consent rate and consent bias of the study sample of opt-in procedures versus opt-out procedures for the reuse of routinely recorded health data for scientific research purposes.

Perceptions of healthcare professional about the "PACE Steps to Success" palliative care program for long-term care: A qualitative study in Switzerland.

Aim: This study aimed to examine the healthcare professionals' perceptions after implementing the "PACE Steps to Success" program in the French-speaking part of Switzerland.

Design: A qualitative descriptive study.

Methods: Thematic analysis of semi-structured face-to-face and group interviews with health professionals, PACE coordinators, and managers purposely invited in the four long-term home facilities that had previously participated in the PACE cluster randomized clinical trial intervention group.

Setting up a Governance Framework for Secondary Use of Routine Health Data in Nursing Homes: Development Study Using Qualitative Interviews.

Background: In the nursing home sector, reusing routinely recorded data from electronic health records (EHRs) for knowledge development and quality improvement is still in its infancy. Trust in appropriate and responsible reuse is crucial for patients and nursing homes deciding whether to share EHR data for these purposes. A data governance framework determines who may access the data, under what conditions, and for what purposes.

Evaluating quality of care at the end of life and setting best practice performance standards: a population-based observational study using linked routinely collected administrative databases.

Background: A high percentage of people dying at home, and a low percentage of people being admitted to hospital and dying there are regarded as indicators of appropriate care at the end of life. However, performance standards for these quality indicators are often lacking, which makes it difficult to state whether an indicator score falls between the ranges of good or poor quality care. The aim of this study was to assess quality indicators concerning place of death and hospital care utilization in people with diseases relevant for palliative care, and to establish best practice performance standards based on indicator scores in 31 regions in the Netherlands.

What difficulties do people with mild intellectual disabilities experience when seeking medical help from their GP? A qualitative study.

Background: People with intellectual disabilities often have low health literacy as a result of their limited language comprehension. The aim of this study was to explore the difficulties Dutch people with intellectual disabilities experience during the process of considering and seeking medical help from their GP. The study was intended as input for an online intervention supporting health literacy.

A dignified last phase of life for patients with a migration background: A qualitative study.

Background: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries.

Regional variation in hospital care at the end-of-life of Dutch patients with lung cancer exists and is not correlated with primary and long-term care.

Objective: To examine the regional variation in hospital care utilization in the last 6 months of life of Dutch patients with lung cancer and to test whether higher degrees of hospital utilization coincide with less general practitioner (GP) and long-term care use.

Design: Cross-sectional claims data study.

Setting: The Netherlands.

Evaluating the implementation of the PACE Steps to Success Programme in long-term care facilities in seven countries according to the RE-AIM framework.

Background: The PACE 'Steps to Success' programme is a complex educational and development intervention for staff to improve palliative care in long-term care facilities (LTCFs). In a cluster randomized controlled trial, this programme has been implemented in 37 LTCFs in 7 European countries. Alongside an effectiveness study, a process evaluation study was conducted.

Evaluation of a Palliative Care Program for Nursing Homes in 7 Countries: The PACE Cluster-Randomized Clinical Trial.

Importance: High-quality evidence on how to improve palliative care in nursing homes is lacking.

Objective: To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes.

Design, Setting, And Participants: A cluster-randomized clinical trial (2015-2017) in 78 nursing homes in 7 countries comparing PACE Steps to Success Program (intervention) with usual care (control).

What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer.

Background: In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive.

Methods: Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives.

How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument.

Background: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients.

Factors Associated with Perception of the Quality of Physicians' End-of-life Communication in Long-Term Care Facilities: PACE Cross-Sectional Study.

Objective: To examine factors associated with perceived quality of communication with physicians by relatives of dying residents of long-term care facilities (LTCFs).

Design: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. In each LTCF, deaths of residents during the 3 months before the researcher's visit were reported.

Perception of the Quality of Communication With Physicians Among Relatives of Dying Residents of Long-term Care Facilities in 6 European Countries: PACE Cross-Sectional Study.

Objective: To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries.

Design: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire.

Palliative care provision in long-term care facilities differs across Europe: Results of a cross-sectional study in six European countries (PACE).

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed.

Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care.

Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland.

The Intensity of Hospital Care Utilization by Dutch Patients With Lung or Colorectal Cancer in their Final Months of Life.

Understanding the overuse and underuse of health-care services in the end-of-life (EoL) phase for patients with lung cancer (LC) and colorectal cancer (CRC) is important, but knowledge is limited. To help identify inappropriate care, we present the health-care utilization profiles for hospital care at the EoL of patients with LC (N = 25 553) and CRC (N = 14 911) in the Netherlands between 2013 and 2015. An administrative database containing all in-hospital health-care activities was analyzed to investigate the association between the number of days patients spent in the emergency department (ED) or intensive care unit (ICU) and their exposure to chemotherapy or radiotherapy.

Physician Visits and Recognition of Residents' Terminal Phase in Long-Term Care Facilities: Findings From the PACE Cross-Sectional Study in 6 EU Countries.

Objectives: To describe the relation between physician visits and physicians' recognition of a resident's terminal phase in long-term care facilities (LTCFs) in Belgium, England, Finland, Italy, the Netherlands, and Poland.

Design: In each country, a cross-sectional study was conducted across representative samples of LTCFs. Participating LTCFs reported all deaths of residents in the previous 3 months, and structured questionnaires were sent to several proxy respondents including the treating physician.

Continuity of GP care after the last hospitalization for patients who died from cancer, chronic obstructive pulmonary disease or heart failure: a retrospective cohort study using administrative data.

Background: Discharge from hospital to home can be a stressful experience for patients and carers. Contact with the GP is important to ensure continuity of care.

Objectives: To investigate timing of contact with the GP and locum after the last hospitalization in the last year of life and to investigate patient and care characteristics related to contact with the GP within 2 days after discharge.

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the 'PACE Steps to Success' intervention in seven countries.

Background: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries.

How do treatment aims in the last phase of life relate to hospitalizations and hospital mortality? A mortality follow-back study of Dutch patients with five types of cancer.

Purpose: The purpose of this study is to describe and compare the relation between treatment aims, hospitalizations, and hospital mortality for Dutch patients who died from lung, colorectal, breast, prostate, or pancreatic cancer.

Methods: A mortality follow-back study was conducted within a sentinel network of Dutch general practitioners (GPs), who recorded the end-of-life care of 691 patients who died from one of the abovementioned cancer types between 2009 and 2015. Differences in care by type of cancer were analyzed using multilevel analyses to control for clustering within general practices.

Relating cause of death with place of care and healthcare costs in the last year of life for patients who died from cancer, chronic obstructive pulmonary disease, heart failure and dementia: A descriptive study using registry data.

Background: The four main diagnostic groups for palliative care provision are cancer, chronic obstructive pulmonary disease, heart failure and dementia. But comparisons of costs and care in the last year of life are mainly directed at cancer versus non-cancer or within cancer patients.

Aim: Our aim is to compare the care and expenditures in their last year of life for Dutch patients with cancer, chronic obstructive pulmonary disease, heart failure or dementia.

How should realism and hope be combined in physician-patient communication at the end of life? An online focus-group study among participants with and without a Muslim background.

Objective: Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician-patient communications at the end of life.

Method: During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics.

Interprofessional communication between oncologic specialists and general practitioners on end-of-life issues needs improvement.

Background: Timely end-of-life (EOL) discussions between patients and physicians are considered essential for high-quality EOL care, but research shows that these discussions frequently do not occur or occur late. In oncology, one barrier for timely EOL discussions is poor collaboration between oncologic specialists and GPs.

Objective: To explore interprofessional communication and coordination between oncologic specialists and GPs on EOL discussions.

Which characteristics of nursing home residents relate to factors influencing their dignity?

Aim of this study was to explore which characteristics of nursing home residents relate to factors influencing their dignity. Questionnaires containing the Measurement Instrument for Dignity AMsterdam - for Long-Term Care facilities (MIDAM-LTC) were administered to 95 nursing home residents, residing on the general medical wards of six nursing homes in the Netherlands. Associations between residents' characteristics and each MIDAM-LTC item as well as the total number of items considerably influencing dignity were calculated.