Opioid underuse in terminal care of long-term care facility residents with pain and/or dyspnoea: A cross-sectional PACE-survey in six European countries.

BACKGROUND/OBJECTIVES: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death. DESIGN AND SETTING: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents' death. MEASUREMENTS: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis. RESULTS: Nurses' response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9-27.2) in the Netherlands, 25.2% (18.3-33.6) in Belgium, 29.3% (16.9-45.8) in England, 33.7% (26.2-42.2) in Finland, 64.6% (52.0-75.4) in Italy and 79.1% (71.2-85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0-78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9-63.8) for pain and 37.4% (19.4-59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20-0.54) when pain was assessed. CONCLUSION: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders.

Comparing Symptom Ratings by Staff and Family Carers in Residents Dying in Long-Term Care Facilities in Three European Countries, Results From a PACE Survey.

CONTEXT: Symptom management is essential in the end-of-life care of long-term care facility residents. OBJECTIVES: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life. METHODS: A postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale, and total scores at a group level and inter-rater agreement and percentage of perfect agreement at a resident level. RESULTS: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia-Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement κ ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying. CONCLUSION: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.

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. This paper reports on the results of this process evaluation, of which the aim was to provide a more detailed understanding of the implementation of the PACE Programme across and within countries. METHODS: The process evaluation followed the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework and involved various measures and tools, including diaries for country trainers, evaluation questionnaires for care staff, attendance lists and interviews (online and face-to-face, individual and in groups) with country trainers, managers, PACE coordinators and other staff members. Based on key elements of the PACE Programme, a priori criteria for a high, medium and low level of the RE-AIM components Reach, Adoption, Implementation and intention to Maintenance were defined. Qualitative data on factors affecting each RE-AIM component gathered in the online discussion groups and interviews were analysed according to the principles of thematic analysis. RESULTS: The performance of the PACE Programme on the RE-AIM components was highly variable within and across countries, with a high or medium score for in total 28 (out of 37) LTCFs on Reach, for 26 LTCFs on Adoption, for 35 LTCFs on Implementation and for 34 LTCFs on intention to Maintenance. The factors affecting performance on the different RE-AIM components could be classified into three major categories: (1) the PACE Programme itself and its way of delivery, (2) people working with the PACE Programme and (3) contextual factors. Several country-specific challenges in implementing the PACE Programme were identified. CONCLUSIONS: The implementation of the PACE Programme was feasible but leaves room for improvement. Our analysis helps to better understand the optimal levels of training and facilitation and provides recommendations to improve implementation in the LTC setting. The results of the process evaluation will be used to further adapt and improve the PACE Programme prior to its further dissemination. TRIAL REGISTRATION: The PACE study was registered at www.isrctn.com-ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) July 30, 2015.

Opioid, antipsychotic and hypnotic use in end of life in long-term care facilities in six European countries: results of PACE.

Background: Opioids, antipsychotics and hypnotics are recommended for comfort care in dying. We studied their prescription during the last 3 days in residents deceased in the long-term care facility (LTCF). Methods: In a retrospective, cross-sectional survey in Belgium, England, Finland, Italy, the Netherlands and Poland, LTCFs, selected by proportional stratified random sampling, reported all deaths over the previous 3 months. The nurse most involved in the residents' care reviewed the chart for opioid, antipsychotic and hypnotic prescription, cause of death and comorbidities. Multivariable logistic regression was performed to adjust for resident characteristics. Results: Response rate was 81.6%. We included 1079 deceased residents in 322 LCTFs. Opioid prescription ranged from 18.5% (95% CI: 13.0-25.8) of residents in Poland to 77.9% (95% CI: 69.5-84.5) in the Netherlands, antipsychotic prescription from 4.8% (95% CI: 2.4-9.1) in Finland to 22.4% (95% CI: 14.7-32.4) in Italy, hypnotic prescription from 7.8% (95% CI: 4.6-12.8) in Finland to 47.9% (95% CI: 38.5-57.3) in the Netherlands. Differences in opioid, antipsychotic and hypnotic prescription between countries remained significant (P < 0.001) when controlling for age, gender, length of stay, cognitive status, cause of death in multilevel, multivariable analyses. Dying from cancer showed higher odds for receiving opioids (OR 3.51; P < 0.001) and hypnotics (OR 2.10; P = 0.010). Conclusions: Opioid, antipsychotic and hypnotic prescription in the dying phase differed significantly between six European countries. Further research should determine the appropriateness of their prescription and refine guidelines especially for LTCF residents dying of non-cancer diseases.

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. METHODS: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). SECONDARY OUTCOMES: resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. DISCUSSION: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities 'PACE Steps to Success' in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. TRIAL REGISTRATION: The study is registered at www.isrctn.com - ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.

Development and Validation of the Symptom Assessment to Improve Symptom Control for Institutionalized Elderly Scale.

OBJECTIVES: To validate a newly developed multiple symptom self-assessment tool in nursing homes. DESIGN: Thirty prevalent symptoms identified in the literature were classified by a 2-round Delphi procedure to a top 10 of the most relevant, burdensome symptoms. Because no existing symptom scale fully covered this top 10, we developed a new scale, consisting of a horizontal numerical scale for the top 10 symptoms, with the possibility to add and rate 3 other symptoms. This scale was validated. SETTING AND PARTICIPANTS: Hundred seventy-four participants, mean age 85 (±5.94) years, were recruited from 7 nursing homes (86%) and 3 acute geriatric wards (14%). METHODS: To test the construct validity, participants with and without a palliative status were enrolled. Participants completed the Symptom Assessment to Improve Symptom Control for Institutionalized Elderly (SATISFIE) scale on day 0 and day 1 (intrarater reliability). Nurses completed the scale on day 0 (inter-rater reliability). Descriptive statistics described the characteristics of the study population and symptom scores. Differences in symptom scores between palliative and nonpalliative participants were analyzed with the Mann-Whitney U test. Intrarater and inter-rater reliability were calculated by means of an intraclass correlation coefficient. Factor analysis searched for possible symptom clusters. Feasibility was evaluated by measuring the assessment time and by providing a questionnaire for the nurses. RESULTS: In the nonpalliative group (n = 130), the highest self-rated median scores were pain on day 1 [median 3, interquartile range (IQR) 0-5] and pain on day 2. In the palliative group (n = 44), the highest median self-rated scores were fatigue on day 1 [median 5 (IQR 0-6)], lack of energy on day 1 and 2 [both median 5 (IQR 0-8)]; and depressed feeling on day 2 [median 3 (IQR 0-5)]. Nurse assessments median scores were the highest for depressed feeling [median 5 (IQR 1-7)], fatigue [median 4.5 (IQR 0-6.5)], and lack of energy, [median 3 (IQR 0-6)] in the palliative group. In the nonpalliative group, none of the median scores was 3 or more. Intraclass correlation coefficients for intrarater reliability varied between 0.65 and 0.89 and for inter-rater reliability (patients-nurses) between 0.18 and 0.63. Mean assessment time for nurses was 2.0 minutes [standard deviation (SD) = 1.01]. For participants, it decreased from 10.5 minutes (SD = 5.41) at the first assessment to 7.5 minutes (SD = 3.72) at the second assessment. Nurses determined the SATISFIE instrument to be useful, applicable in daily practice, and sufficiently comprehensible for the patients. CONCLUSIONS: The SATISFIE scale is a valid and feasible instrument for regular, multiple symptom assessment in institutionalized older persons.