Dataset Information

Timely short-term specialised palliative care service intervention for frail older people and their family carers in primary care: study protocol for a pilot randomised controlled trial.

ABSTRACT:

Introduction

There is limited evidence regarding the effectiveness of timely integration of short-term specialised palliative care services for older people in primary care. Using a Theory of Change approach, we developed such an intervention, the Frailty+ intervention. We present the protocol of a pilot randomised controlled trial (RCT) with a process evaluation that aims to assess the feasibility and preliminary effectiveness of the Frailty+ intervention.

Methods and analysis

We will conduct a pilot RCT in Flanders, Belgium. Frail older people who are discharged to home from hospital will be identified and recruited. Seventy-six will be randomly assigned either to the control group (standard care) or the intervention group (Frailty+ intervention alongside standard care). Data will be collected from patients and family carers. At the core of the Frailty+ intervention is the provision of timely short-term specialised palliative care facilitated by a nurse from the specialised palliative home care service over a period of 8 weeks. We will assess feasibility in terms of recruitment, randomisation, acceptability of the intervention, retention in the programme and data completion. The primary outcome for assessing preliminary effectiveness is a mean score across five key symptoms that are amenable to change (ie, breathlessness, pain, anxiety, constipation, fatigue), measured at baseline and 8 weeks post-baseline. The process evaluation will be conducted in the intervention group only, with measurements at 8-11 weeks post-baseline to evaluate implementation, mechanisms of change and contextual factors.

Ethics and dissemination

The study has been approved by the ethics committee of University Hospital Ghent. Results will be used to inform the design of a full-scale RCT and will be published in a peer-reviewed, open access journal.

Trial registration number

ISRCTN39282347; Pre-results.

SUBMITTER: de Nooijer K

PROVIDER: S-EPMC8483035 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:ObjectivesTo investigate the experiential impact of the COVID-19 pandemic on patients with non-COVID, life-threatening disease and their family carers.DesignAn interpretative qualitative design informed by phenomenological hermeneutics and based on data from in-depth interviews, performed between June and September 2020.SettingPatients receiving specialised palliative home care and their family carers living in Sweden.Participants22 patients (male/female 11/11) and 17 carers (male/female 5/12) aged 50 years and older. All the patients received specialised palliative home care and most were diagnosed with cancer.Inclusion criteriaaged 18 years or older, diagnosed with an incurable life-threatening, non-COVID disease, sufficient strength to participate and capacity to provide informed consent. Participants were selected through a combination of convenient and consecutive sampling.ResultsThe significance of the pandemic for both patients and carers showed a continuum from being minimally affected in comparison to the severe underlying disease to living in isolation with constant fear of becoming infected and falling ill with COVID-19, which some likened to torture.The imposed restrictions on social contact due to the pandemic were particularly palpable for this group of people with a non-COVID-19, life-limiting condition, as it was said to steal valuable moments of time that had already been measured.Most patients and carers found access to specialised palliative home care was maintained despite the pandemic. This care was of paramount importance for their sense of security and was often their sole visiting social contact.ConclusionsIn the pandemic situation, highly accessible support from healthcare and social care at home is particularly important to create security for both patients and carers. Thus, to provide appropriate support, it is important for healthcare and social care personnel to be aware of the great diversity of reactions patients in palliative care and their carers may have to a pandemic threat.

Project description:ObjectiveTo estimate future palliative care need and complexity of need in Scotland, and to identify priorities for future service delivery.DesignWe estimated the prevalence of palliative care need by analysing the proportion of deaths from defined chronic progressive illnesses. We described linear projections up to 2040 using national death registry data and official mortality forecasts. An expert consultation and subsequent online consensus survey generated recommendations on meeting future palliative care need.SettingScotland, population of 5.4 million.ParticipantsAll decedents in Scotland over 11 years (2007 to 2017). The consultation had 34 participants; 24 completed the consensus survey.Primary and secondary outcomesEstimates of past and future palliative care need in Scotland from 2007 up to 2040. Multimorbidity was operationalised as two or more registered causes of death from different disease groups (cancer, organ failure, dementia, other). Consultation and survey data were analysed descriptively.ResultsWe project that by 2040, the number of people requiring palliative care will increase by at least 14%; and by 20% if we factor in multimorbidity. The number of people dying from multiple diseases associated with different disease groups is projected to increase from 27% of all deaths in 2017 to 43% by 2040. To address increased need and complexity, experts prioritised sustained investment in a national digital platform, roll-out of integrated electronic health and social care records; and approaches that remain person-centred.ConclusionsBy 2040 more people in Scotland are projected to die with palliative care needs, and the complexity of need will increase markedly. Service delivery models must adapt to serve growing demand and complexity associated with dying from multiple diseases from different disease groups. We need sustained investment in secure, accessible, integrated and person-centred health and social care digital systems, to improve care coordination and optimise palliative care for people across care settings.