The Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its... Show moreThe Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its validity has been tested only in the USA and the Netherlands. The aim of this paper is to evaluate the FPPFC construct validity and its reliability, as well as the psychometric characteristics of the items comprising the scale. Data were collected in cross-sectional study in Belgium, Finland, Italy, the Netherlands and Poland. The factorial structure was tested in confirmatory factor analysis. Item parameters were obtained using an item response theory model. Participants were 737 relatives of nursing home residents who died up to 3 months prior to the study. In general, the FPPFC scale proved to be a unidimensional and reliable measure of the perceived quality of physician-family communication in nursing home settings in all five countries. Nevertheless, we found unsatisfactory fit to the data with a confirmatory model. An item that referred to advance care planning performed less well in Poland and Italy than in the Northern European countries. In the item analysis, we found that with no loss of reliability and with increased coherency of the item content across countries, the full 7-item version can be shortened to a 4-item version, which may be more appropriate for international studies. Therefore, we recommend use of the brief 4-item FPPFC version by nursing home managers and professionals as an evaluation tool, and by researchers for their studies as these four items confer the same meaning across countries. Show less
Block, L. van den; Honinx, E.; Pivodic, L.; Miranda, R.; Onwuteaka-Philipsen, B.D.; Hout, H. van; ... ; PACE Trial Grp 2020
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... Show moreIMPORTANCE 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). Randomization was stratified by country and median number of beds in each country in a 1:1 ratio. Interventions The PACE Steps to Success Program is a multicomponent intervention to integrate basic nonspecialist palliative care in nursing homes. Using a train-the-trainer approach, an external trainer supports staff in nursing homes to introduce a palliative care approach over the course of 1 year following a 6-steps program. The steps are (1) advance care planning with residents and family, (2) assessment, care planning, and review of needs and problems, (3) coordination of care via monthly multidisciplinary review meetings, (4) delivery of high-quality care focusing on pain and depression, (5) care in the last days of life, and (6) care after death. Main Outcomes and Measures The primary resident outcome was comfort in the last week of life measured after death by staff using the End-of-Life in Dementia Scale Comfort Assessment While Dying (EOLD-CAD; range, 14-42). The primary staff outcome was knowledge of palliative care reported by staff using the Palliative Care Survey (PCS; range, 0-1). Results Concerning deceased residents, we collected 551 of 610 questionnaires from staff at baseline and 984 of 1178 postintervention in 37 intervention and 36 control homes. Mean (SD) age at time of death ranged between 85.22 (9.13) and 85.91 (8.57) years, and between 60.6% (160/264) and 70.6% (190/269) of residents were women across the different groups. Residents' comfort in the last week of life did not differ between intervention and control groups (baseline-adjusted mean difference, -0.55; 95% CI, -1.71 to 0.61; P = .35). Concerning staff, we collected 2680 of 3638 questionnaires at baseline and 2437 of 3510 postintervention in 37 intervention and 38 control homes. Mean (SD) age of staff ranged between 42.3 (12.1) and 44.1 (11.7) years, and between 87.2% (1092/1253) and 89% (1224/1375) of staff were women across the different groups. Staff in the intervention group had statistically significantly better knowledge of palliative care than staff in the control group, but the clinical difference was minimal (baseline-adjusted mean difference, 0.04; 95% CI, 0.02-0.05; P < .001). Data analyses began on April 20, 2018. Conclusions and Relevance Residents' comfort in the last week of life did not improve after introducing the PACE Steps to Success Program. Improvements in staff knowledge of palliative care were clinically not important. Show less
Koppel, M. ten; Onwuteaka-Philipsen, B.D.; Block, L. van den; Deliens, L.; Gambassi, G.; Heymans, M.W.; ... ; PACE 2019
There have been very few and limited cross-national comparisons concerning pain among residents of long-term care facilities in Europe. The aim of the present cross-sectional study has been to... Show moreThere have been very few and limited cross-national comparisons concerning pain among residents of long-term care facilities in Europe. The aim of the present cross-sectional study has been to document the prevalence of pain, its frequency and severity as well as its correlates in three European countries: Finland (north), Italy (south) and the Netherlands (western central). Patients (aged 65 years or above) were assessed with the Minimum Data Set 2.0 (MDS). The final sample comprised 5761 patients from 64 facilities in Finland, 2295 patients from 8 facilities in the Netherlands and 1959 patients from 31 facilities in Italy. The prevalence of pain-defined as any type of pain-varied between 32% in Italy, 43% in the Netherlands and 57% in Finland. In nearly 50% of cases, pain was present daily; there were no significant differences in pain prevalence between patients with cancer diagnosis and those with non-cancer diagnosis. Regardless of the different prevalence estimates, pain was moderate-to-severe in over 50% of cases in all the countries. In multivariate logistic regression models, clinical correlates of pain were substantially similar across countries: pain was positively correlated with more severe physical disability (ADL impairment), clinical depression and a diagnosis of osteoporosis. Pain was negatively correlated with a diagnosis of dementia and more severe degrees of cognitive deterioration. We conclude that pain is frequently encountered in long-term care facilities in Europe and that, despite cultural and case-mix differences, pain speaks one language. (C) 2009 International Association for the Study of Pain. Published by Elsevier B. V. All rights reserved. Show less
