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Feasibility of Patient Reported Outcome Measures in Psychosocial Palliative Care: Observational Cohort Study of Hospice Day Care and Social Support Groups.

ABSTRACT: Palliative care patients can be at risk of social isolation or loneliness. Interventions that can provide effective social support, and particularly emotional support, could facilitate healthy coping that bolsters quality of life and reduces depression in palliative care patients. This is an observational cohort study which recruited thirty patients (n = 30) from the day services of four independent hospices in England. Participants completed patient reported outcome measures in perceived social support, loneliness, and depression, at up to three time points. Age range was 56-91 years, males and females were equally represented, and the sample was 93% white British. In participants that provided two or more timepoints, perceived social support increased, and loneliness and depression decreased. Largest changes with the least variation between participants was in emotional support (p = 0.165) and loneliness (p = 0.104). These results suggest that the psychosocial patient reported outcome measures used (MOS-SS, UCLA, BEDS) could be sensitive to change aligned with the goals of this intervention in palliative care. Participants in this study were observed to derive psychosocial benefit from attending the hospice day service.

SUBMITTER: Bradley N

PROVIDER: S-EPMC9603547 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature

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Feasibility of Patient Reported Outcome Measures in Psychosocial Palliative Care: Observational Cohort Study of Hospice Day Care and Social Support Groups.

Bradley Natasha N Dowrick Christopher C Lloyd-Williams Mari M

International journal of environmental research and public health 20221014 20

Palliative care patients can be at risk of social isolation or loneliness. Interventions that can provide effective social support, and particularly emotional support, could facilitate healthy coping that bolsters quality of life and reduces depression in palliative care patients. This is an observational cohort study which recruited thirty patients (<i>n</i> = 30) from the day services of four independent hospices in England. Participants completed patient reported outcome measures in perceived ...[more]

PMID: 36293835

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Project description:BackgroundResearch has shown that routinely assessed, patient-reported outcome measures (PROMs) have positive effects in patients with advanced oncologic diseases. However, the transferability of these results to specialist palliative care is uncertain because patients are more impaired and staff doubt the feasibility and benefits. The aim of this study is to evaluate the feasibility of patient self-assessment of PROMs, their use by staff and the benefits in palliative care wards.MethodA multicentre observational study was conducted in the context of the implementation of the Integrated Patient Outcome Scale (IPOS) in three specialist palliative care wards at university hospitals in Germany. All admitted patients who screened positive regarding their ability to complete questionnaires were asked to participate and complete the IPOS on paper weekly, with assistance if necessary. Feasibility of questionnaire completion (e.g. proportion of patients able to complete them), use (e.g. involvement of different professional groups) and benefit (e.g. unexpected information in IPOS as rated by treating physicians) were assessed. Staff members' opinion was obtained in a written, anonymous evaluation survey, patients' opinion in a short written evaluation.ResultsA total of 557 patients were screened for eligibility, 235 were assessed as able to complete the IPOS (42.2%) and 137 participated in the study (24.6%). A majority needed support in completing the IPOS; 40 staff members and 73 patients completed the evaluation. Unexpected information was marked by physicians in 95 of the 137 patient questionnaires (69.3%). The staff differed in their opinions on the question of whether this also improved treatment. A majority of 32 staff members (80.0%) were in favour of continuing the use of IPOS (4 against continuation, 4 no answer); 43 (58.9%) patients rated their overall experience of IPOS use as 'positive', 29 (39.7%) as 'neutral' and 1 (1.4%) as 'negative'.ConclusionsWhile most staff wished to continue using IPOS, it was a challenge to integrate the effort to support the completion of IPOS into daily practice. Digital implementation was not successful, despite various attempts. To explore the effects on care and patient outcomes, multicentre cluster-randomised trials could be employed.Trial registrationGerman Clinical Trials Register DRKS-ID: DRKS00016681 (24/04/2019).

Project description:BackgroundAccess to hospice palliative care may improve quality of life, reduce the use of potentially aggressive end-of-life care and allow for death to occur outside of an acute care hospital. The aim of this study was to examine the impact of an ambulatory hospice palliative care program on end-of-life care compared to care received by a matched control group of deceased patients.MethodsThis retrospective study included patients who received hospice palliative care through the Symptom Management Program in Sudbury, Ontario, during 2012-2015. Using linked administrative health records, we defined a propensity-matched control group and derived 4 previously defined variables associated with aggressive end-of-life care (chemotherapy received in the last 2 wk of life, > 1 emergency department visit within 30 d of death, > 1 hospital admission within 30 d of death and at least 1 intensive care unit admission within 30 d of death). We also examined place of death. We measured family/caregiver satisfaction with care 3 months after the patient's death using the FAMCARE questionnaire.ResultsOf 914 eligible decedents enrolled in the Symptom Management Program, 754 (82.5%) were matched. Receiving care through the program was protective for most measures of aggressive end-of-life care (absolute risk reduction [ARR] 12.73, 95% confidence interval [CI] 12.65-12.81 for any end-of-life care outcome) and death in an acute care setting (ARR 19.89, 95% CI 19.78-20.00). Of the 450 family caregivers invited to complete the FAMCARE questionnaire, 190 (42.2%) returned completed surveys; following data linkage and matching, 96 (21.3%) were available for analysis. Satisfaction with care received within the program appeared high (mean total score 85.72/100).InterpretationProvision of hospice palliative care through this ambulatory program was associated with lower use of aggressive end-of-life care and death outside of an acute care hospital. Improving access could be expected to provide positive benefits at the individual and system level.

Project description:BackgroundThe use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC.MethodsFive SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members (n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures.ResultsWe found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording.ConclusionsSOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be.Trial registrationMay 19th, 2017, German Clinical Trials Register DRKS-ID: DRKS00012421 .

Project description:BackgroundAfter over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society.ObjectiveTo describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying.DesignIn this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers.Participants and settingMulti-disciplinary hospice palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying.Ethical considerationsThe research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms.ResultsThe 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients' last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics.ConclusionWhile being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider's perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients' end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying.

Dataset Information

Feasibility of Patient Reported Outcome Measures in Psychosocial Palliative Care: Observational Cohort Study of Hospice Day Care and Social Support Groups.

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Feasibility of Patient Reported Outcome Measures in Psychosocial Palliative Care: Observational Cohort Study of Hospice Day Care and Social Support Groups.

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