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      Understanding patient and family utilisation of community-based palliative care services out-of-hours: Additional analysis of systematic review evidence using narrative synthesis

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          Abstract

          Background

          Community-based out-of-hours services are an integral component of end-of-life care. However, there is little understanding of how patients and families utilise these services. This additional analysis of a systematic review aims to understand and identify patterns of out-of-hours service use and produce recommendations for future service design.

          Method

          Data on service use was extracted and secondary analysis undertaken, from a systematic review of models of community out-of-hours services. Narrative synthesis was completed, addressing four specific aspects of service use: 1.Times when patients/families/healthcare professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services; 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-of-hours calls.

          Results

          Community-based out-of-hours palliative care services were most often accessed between 5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-of-hours). Family members and carers were the most frequent callers to of the services (making between 60% and 80% of all calls). The type of contact (telephone, centre visit or home visit) varied based on what was offered and on patient need. Over half of services were led by a single discipline (nurse).

          Conclusions

          Out-of-hours services are highly used up to midnight, and particularly by patients’ family and carers. Recommendations to commissioners and service providers are to:

          • Increase provision of out-of-hours services between 5pm and midnight to reflect the increased use at these times.

          • Ensure that family and carers are provided with clear contact details for out-of-hours support.

          • Ensure patient records can be easily accessed by health professionals responding to calls, making the triage process easier.

          • Listen to patients, family and carers in the design of out-of-hours services, including telephone services.

          • Collect data systematically on out-of-hours-service use and on outcomes for patients who use the service.

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          Most cited references48

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          Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

          Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. Authors' conclusions The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies. PLAIN LANGUAGE SUMMARY Effectiveness and cost-effectiveness of home-based palliative care services for adults with advanced illness and their caregivers When faced with the prospect of dying with an advanced illness, the majority of people prefer to die at home, yet in many countries around the world they are most likely to die in hospital. We reviewed all known studies that evaluated home palliative care services, i.e. experienced home care teams of health professionals specialised in the control of a wide range of problems associated with advanced illness – physical, psychological, social, spiritual. We wanted to see how much of a difference these services make to people's chances of dying at home, but also to other important aspects for patients towards the end of life, such as symptoms (e.g. pain) and family distress. We also compared the impact on the costs with care. On the basis of 23 studies including 37,561 patients and 4042 family caregivers, we found that when someone with an advanced illness gets home palliative care, their chances of dying at home more than double. Home palliative care services also help reduce the symptom burden people may experience as a result of advanced illness, without increasing grief for family caregivers after the patient dies. In these circumstances, patients who wish to die at home should be offered home palliative care. There is still scope to improve home palliative care services and increase the benefits for patients and families without raising costs.
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            Consequences of chronic diseases and other limitations associated with old age – a scoping review

            Background The phenomenon of the increasing number of ageing people in the world is arguably the most significant economic, health and social challenge that we face today. Additionally, one of the major epidemiologic trends of current times is the increase in chronic and degenerative diseases. This paper tries to deliver a more up to date overview of chronic diseases and other limitations associated with old age and provide a more detailed outlook on the research that has gone into this field. Methods First, challenges for seniors, including chronic diseases and other limitations associated with old age, are specified. Second, a review of seniors’ needs and concerns is performed. Finally, solutions that can improve seniors’ quality of life are discussed. Publications obtained from the following databases are used in this scoping review: Web of Science, PubMed, and Science Direct. Four independent reviewers screened the identified records and selected relevant publications published from 2010 to 2017. A total of 1916 publications were selected. In all, 52 papers were selected based on abstract content. For further processing, 21 full papers were screened.” Results The results indicate disabilities as a major problem associated with seniors’ activities of daily living dependence. We founded seven categories of different conditions - psychological problems, difficulties in mobility, poor cognitive function, falls and incidents, wounds and injuries, undernutrition, and communication problems. In order to minimize ageing consequences, some areas require more attention, such as education and training; technological tools; government support and welfare systems; early diagnosis of undernutrition, cognitive impairment, and other diseases; communication solutions; mobility solutions; and social contributions. Conclusions This scoping review supports the view on chronic diseases in old age as a complex issue. To prevent the consequences of chronic diseases and other limitations associated with old age related problems demands multicomponent interventions. Early recognition of problems leading to disability and activities of daily living (ADL) dependence should be one of essential components of such interventions.
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              Elements of effective palliative care models: a rapid review

              Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time. Conclusion Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model elements relevant to Australia’s health system.
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                Author and article information

                Contributors
                Role: ConceptualizationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Formal analysisRole: Writing – original draft
                Role: Formal analysisRole: Project administrationRole: Writing – review & editing
                Role: Writing – review & editing
                Role: ConceptualizationRole: Writing – review & editing
                Role: ConceptualizationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: SupervisionRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS One
                plos
                PLOS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                21 February 2024
                2024
                : 19
                : 2
                : e0296405
                Affiliations
                [1 ] Cicely Saunders Institute of Palliative Care and Rehabilitation, King’s College London, London, United Kingdom
                [2 ] King’s College London Medical School, London, United Kingdom
                [3 ] Sussex Community NHS Foundation Trust, Brighton, United Kingdom
                [4 ] Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom
                University of Sri Jayewardenepura, SRI LANKA
                Author notes

                Competing Interests: The authors have declared that no competing interests exist

                Author information
                https://orcid.org/0000-0003-0114-7488
                https://orcid.org/0009-0002-8167-0286
                Article
                PONE-D-23-10908
                10.1371/journal.pone.0296405
                10880966
                38381768
                b8a77461-76a5-4059-9532-064a1d85fe62
                © 2024 Goodrich et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 4 May 2023
                : 12 December 2023
                Page count
                Figures: 1, Tables: 1, Pages: 15
                Funding
                Funded by: National Institute for Health and Care Research (NIHR) Senior Investigator
                Award ID: NA
                Award Recipient :
                Funded by: funder-id http://dx.doi.org/10.13039/501100000654, Marie Curie;
                Award ID: MCRGS-20171219-8011
                Award Recipient :
                This study initially started as a Scholarly Project as part of Caleb Watson’s medical degree and focuses on understanding and identifying patterns of community-based out-of-hours palliative care service utilisation. It forms part of a larger out-of-hours review describing the components of models of such services, which in turn is part of a wider study ‘Understanding and improving community palliative care outside normal working hours’ funded by Marie Curie, Research Grant Research Grant MCRGS-20171219-8011. Fliss Murtagh, one of the authors, is a National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Medicine and Health Sciences
                Health Care
                Palliative Care
                People and Places
                Population Groupings
                Professions
                Medical Personnel
                Nurses
                Medicine and Health Sciences
                Health Care
                Health Care Providers
                Nurses
                Medicine and Health Sciences
                Health Care
                Health Care Facilities
                Hospitals
                Medicine and Health Sciences
                Health Care
                Health Care Providers
                Allied Health Care Professionals
                Research and Analysis Methods
                Research Assessment
                Systematic Reviews
                Medicine and Health Sciences
                Health Care
                Primary Care
                Research and Analysis Methods
                Research Design
                Qualitative Studies
                Medicine and Health Sciences
                Health Care
                End of Life Care
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                All relevant data are within the manuscript and its Supporting Information files.

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