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Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

ABSTRACT: INTRODUCTION:For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. METHODS AND ANALYSIS:This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. ETHICS AND DISSEMINATION:Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups.

SUBMITTER: Hackett J

PROVIDER: S-EPMC5961581 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

Hackett Julia J Bekker Hilary H Bennett Michael I MI Carder Paul P Gallagher Jean J Henry Claire C Kite Suzanne S Taylor Sally S Velikova Galina G Ziegler Lucy L

BMJ open 20180514 5

<h4>Introduction</h4>For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals a ...[more]

PMID: 29764891

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Project description:OBJECTIVE:To investigate timely access to palliative medicines/drugs (PMs) from community pharmacies to inform palliative care service delivery. DESIGN:Mixed methods in two sequential phases: (1) prospective audit of prescriptions and concurrent survey of patients/representatives collecting PMs from pharmacy and (2) interviews with community pharmacists (CPs) and other healthcare professionals (HCPs). SETTING:Five community pharmacies in Sheffield, UK and HCPs that deliver palliative care in that community. PARTICIPANTS:Phase 1: five CPs: two providing access to PMs within a locally commissioned service (LCS) and three not in the LCS; 55 patients/representatives who completed the survey when accessing PMs and phase 2: 16 HCPs, including five phase 1 CPs, were interviewed. RESULTS:The prescription audit collected information on 75 prescriptions (75 patients) with 271 individual PMs; 55 patients/representatives (73%) completed the survey. Patients/representatives reported 73% of PMs were needed urgently. In 80% of cases, patients/representatives received all PMs on the first pharmacy visit. One in five had to travel to more than one pharmacy to access PMs. The range of PMs stocked by pharmacies was the key facilitating factor. CPs reported practical issues causing difficulty keeping PMs in stock and playing a reactive role with palliative prescriptions. Confidentiality concerns were cited by other HCPs who were reluctant to share key patient information proactively with pharmacy teams. Inadequate information transfer, lack of CP integration into the care of palliative patients and poor HCP knowledge of which pharmacies stock PMs meant patients and their families were not always able to access PMs promptly. CONCLUSIONS:Consistent routine information transfer and integration of pharmacy teams in the care of palliative patients are needed to achieve timely access to PMs. Commissioners of PM access schemes should review and monitor access. HCPs need to be routinely made aware and reminded about the service and its locations.

Project description:ObjectivesAnticipation and prompt relief of symptoms among patients with a life-limiting illness is a core element of palliative care. Indigenous Australians commonly encounter cultural barriers in healthcare that may impair outcomes. The Palliative Care Outcomes Collaboration collects patient care data for the purposes of continuous quality improvement and benchmarking, with each recorded care episode divided into phases that reflect a patient's condition. We aimed to investigate differences between Indigenous and non-Indigenous patients in the occurrence and duration of 'unstable' phases (which indicate unanticipated deterioration in a patient's condition or circumstances), and determine attainment of the relevant benchmark (resolution of unstable phases in ≤3 days in 90% of cases) for both groups.DesignCohort study.SettingAustralia-wide hospital-based and community-based specialist palliative care (1 January 2010 to 30 June 2015).Participants139 556 (1502 Indigenous and 138 054 non-Indigenous) adult patients.Outcome measuresIndigenous and non-Indigenous patients were compared on (1) the risk of a phase being categorised as unstable, (2) the duration of unstable phases, and (3) the risk of unstable phases being prolonged (>3 days). Crude and adjusted estimates were produced from three-level robust Poisson regression and complementary log-log discrete time survival models.ResultsUnstable phases occurred with similar frequency overall among Indigenous and non-Indigenous patients (adjusted relative risks 1.06; 95% CI 1.00 to 1.11; not significant after correction for multiple comparisons). The duration and risk of prolongation of unstable phases were similar in both patient groups, with no significant differences evident among subgroups. The benchmark was not met for either Indigenous or non-Indigenous patients (unstable phase duration >3 days in 24.3% vs 25.5%; p=0.398).ConclusionsDespite well-documented shortcomings of healthcare for Indigenous Australians, there is no clear evidence of greater occurrence or prolongation of unanticipated problems among Indigenous patients accessing specialist palliative care services in hospital or the community.

Dataset Information

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

Publications

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

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