Abstract
BackgroundStarting with early identification of palliative care patients by general practitioners (GPs), the Care Pathway for Primary Palliative Care (CPPPC) is believed to help primary health care workers to deliver patient- and family-centered care in the last year of life. The care pathway has been pilot-tested, and will now be implemented in 5 Belgian regions: 2 Dutch-speaking regions, 2 French-speaking regions and the bilingual capital region of Brussels. The overall aim of the CPPPC is to provide better quality of primary palliative care, and in the end to reduce the hospital death rate.The aim of this article is to describe the quantitative design and innovative data collection strategy used in the evaluation of this complex intervention.Methods/DesignA quasi-experimental stepped wedge cluster design is set up with the 5 regions being 5 non-randomized clusters. The primary outcome is reduced hospital death rate per GPs’ patient population. Secondary outcomes are increased death at home and health care consumption patterns suggesting high quality palliative care.Per research cluster, GPs will be recruited via convenience sampling. These GPs -volunteering to be involved will recruit people with reduced life expectancy and their informal care givers. Health care consumption data in the last year of life, available for all deceased people having lived in the research clusters in the study period, will be used for comparison between patient populations of participating GPs and patient populations of non-participating GPs. Description of baseline characteristics of participating GPs and patients and monitoring of the level of involvement by GPs, patients and informal care givers will happen through regular, privacy-secured web-surveys.Web-survey data and health consumption data are linked in a secure way, respecting Belgian privacy laws.DiscussionTo evaluate this complex intervention, a quasi-experimental stepped wedge cluster design has been set up. Context characteristics and involvement level of participants are important parameters in evaluating complex interventions. It is possible to securely link survey data with health consumption data. By appealing to IT solutions we hope to be able to partly reduce respondent burden, a known problem in palliative care research.Trial registrationClinicalTrials.gov Identifier: NCT02266069.
Highlights
Introduction of Advance CarePlanning: participating general practitioners (GPs) are asked to introduce Advance Care Planning to eligible patients
Delivery of high quality palliative care: GPs are expected to deliver optimal quality of palliative care which could be achieved by three instruments suggested by the Care Pathway for Primary Palliative Care (CPPPC): (1) the ‘palliative care pathway’-file, (2) the Palliative Performance Scale (PPSv2) [26], and (3) a manual on primary palliative care in Belgium, all available at www.pro-spinoza.be in Dutch and French
The evaluation of the implementation of the CPPPC The overall aim of this study is to evaluate whether the regional implementation of the CPPPC leads to an improved quality of palliative care in a region, seen from different perspectives: (1) of the people with limited life expectancy and their informal caregivers, (2) of GPs and (3) of the National Institute for Health and Disability Insurance (NIHDI) as the national health care financing organization
Summary
A general discussion of the research protocol and its rationale is followed by a further discussion of the major advantages and disadvantages of collecting data by means of an electronic platform, how this study design tries to tackle the six key challenges in palliative care research and how this study design fits into the Learning Health Care System’s paradigm. There was attention for these key challenges while designing this study, recruitment of GPs and patients is still expected to be time-consuming This approach fits in the Learning Health Care System’s paradigm This study uses routine health care consumption data to describe the possible effect of this intervention aiming to improve palliative care delivery in the community. This approach being similar to the concepts of the Transform Project [13], in which routine data in the primary care Electronic Health Records (EHR) are used to find patient EHR data for research purposes [12], fits into the ideal of the Learning Health Care System. Large-scale epidemiological and health-economic studies will be made possible in a feasible way [12]
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