Research, recruitment and observational data collection in care homes : lessons from the PACE study

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries. Results: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study

Engaging nursing homes (NHs) in the PACE study:comparing recruitment in observational and intervention research designs

Background: NH residents are often excluded from epidemiological studies, demonstrating a need for representative, internationally comparable research in this area. Data on palliative care provided by NHs is reported to the Care Quality Commission in England, but the quality of care is often locally determined. Aims: To review the challenges encountered in engaging and recruiting NHs across England to the European Commission funded PACE research project; a two part study comprising of a retrospective, cross sectional survey of deaths and a cluster randomised controlled trial (RCT) of the ‘PACE Steps to Success’ end of life training intervention. Methods: Study 1 collected quantitative data from NH staff, general practitioners and relatives of 200 deceased NH residents in 50 NHs. Study 2 aimed to recruit twelve NHs, six in each arm of the RCT. The research team encountered challenges throughout the research process, including developing a representative sampling framework, obtaining ethical approvals, advertising the study and recruiting NHs. Results: Study 1 has recruited 44 NHs resulting in data on 92 deceased residents from 32 research visits made so far. Identifying NHs through random sampling resulted in fewer NHs recruited compared to advertising through the ENRICH NHs research networks. Average death rates per NH were lower than expected (3.1 per three months). Study 2 is in the process of recruiting twelve NHs with the support of local ENRICH teams by January 2016. Lack of time and resources, concerns regarding data protection and fear of opening up to potential criticism were identified as barriers to participation. Conclusions: Observational and RCT research designs in NHs require distinct recruitment processes. Whilst representativeness was attained in study 1, ensuring a rigorous random sample was not possible. In both studies, the engagement with NH research networks and informal contacts improved the rate and extent of research involvement

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. Settings and participants: 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland. Methods: The Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types. Results: The FPPFC score was the lowest in Finland (1.4 +/- 0.8) and the highest in Italy (2.2 +/- 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with onsite physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%). Conclusion: The relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life. Implications: Training in end-of-life communication to physicians providing care for LTCF residents is recommended

Towards a standardised approach for evaluating guidelines and guidance documents on palliative sedation: Study protocol

Background: Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials. According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation. Methods and design. A multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication. Discussion. We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences

Physical restraining of nursing home residents in the last week of life : an epidemiological study in six European countries

Background: End-of-life care in nursing homes holds several risk factors for the use of physical restraints on residents, a practice shown to be neither safe nor effective. Objectives: To determine the frequency of physical limb and/or trunk restraint use in the last week of life of nursing home residents in six European countries and its association with country, resident and nursing home characteristics. Design: Epidemiological survey study. Setting: Proportionally stratified random sample of nursing homes in Belgium (BE), England (ENG), Finland (FI), Italy (IT), the Netherlands (NL), and Poland (PL). Participants: Nursing home staff (nurses or care assistants). Methods: In all participating nursing homes, we identified all residents who died during the three months prior to measurements. The staff member most involved in each resident's care indicated in a structured questionnaire whether trunk and/or limb restraints were used on that resident during the last week of life 'daily', 'less frequently than daily' or not used'. Results: In 322 nursing homes, staff returned questionnaires regarding 1384 deceased residents (response rate 81%). Limb and/or trunk restraints were used "daily" in the last week of life in 8% (BE), 1% (ENG), 4% (FI), 12% (IT), 0% (NL), and 0.4% (PL) of residents; and "less frequently than daily" in 4% (BE), 0% (ENG), 0.4% (FI), 6% (IT), 0% (NL), and 3.5% (PL) of residents. Restraint use was associated with country (p = 0.020) and inversely associated with residents' age (p = 0.017; odds ratio 0.96, 95% confidence interval 0.93 to 0.99). Restraint use was not significantly associated with resident's gender, dementia, functional status, staffing level, or the level of dependency of residents within the nursing home. Conclusions: In all but one of the six countries studied, staff reported that nursing home residents were restrained through limb and/or trunk restraints in the last week of life. The proportion of restrained residents was highest in Italy and Belgium. Organizational and resident characteristics may not be relevant predictors of restraint use at the end of life in this setting. National policy that explicitly discourages physical restraints in nursing home care and suggests alternative practices may be an important component of strategies to prevent their use. (C) 2019 The Author(s). Published by Elsevier Ltd

The palliative care knowledge of nursing home staff : the EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries

Background: The provision of high-quality palliative care in nursing homes (NHs) is a major challenge and places demands on the knowledge and skills of the staff. Aim: This study assesses the palliative care knowledge of staff in NHs in Europe. Design: Cross-sectional study using structured survey Setting/participants: Nurses and care assistants working in 322 representative samples of NHs in Belgium, the Netherlands, England, Finland, Poland and Italy. Palliative care knowledge is measured with the Palliative Care Survey. Scores on the scales range between 0 and 1; higher scores indicate more knowledge. Results: A total of 3392 NH-staff were given a questionnaire, and 2275 responded (67%). Knowledge of basic palliative care issues ranged between 0.20 in Poland (95% confidence interval (CI) 0.19; 0.24) and 0.61 in Belgium (95% CI 0.59; 0.63), knowledge of physical aspects that can contribute to pain ranged between 0.81 in Poland (95% CI 0.79; 0.84) and 0.91 in the Netherlands (95% CI 0.89; 0.93), and knowledge of psychological reasons that can contribute to pain ranged between 0.56 in England (95% CI 0.50; 0.62) and 0.87 in Finland (95% CI 0.83; 0.90). Factors associated with knowledge were country, professional role and having undertaken formal training in palliative care. Conclusions: Knowledge of nurses and care assistants concerning basic palliative care issues appears to be suboptimal in all participating countries, although there is substantial heterogeneity. Education of nursing staff needs to be improved across, but each country may require its own strategy to address the unique and specific knowledge gaps

Comparing palliative care in care homes across Europe (PACE) : protocol of a cross-sectional study of deceased residents in 6 EU countries

Objectives: Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. Design and Methods: To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and socio-demographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. Conclusion: Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes

Comparing palliative care in care homes across Europe (PACE):protocol of a cross-sectional study of deceased residents in six EU countries

Objectives While a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Crosscountry representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare six countries in terms of 1) resident outcomes, quality and costs of palliative and end-of-life care; 2) palliative care structures and staff knowledge and attitudes towards palliative care. We also aim to explore country, facility, staff, patient and care characteristics related to better outcomes at resident level. Design and Methods To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous three-month period. For each case, structured questionnaires including validated instruments are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (GP or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and socio-demographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. Conclusion Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence-base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes

A framework for cross-cultural development and implementation of complex interventions to improve palliative care in nursing homes : the PACE steps to success programme

The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar