Implementation of a Care Pathway for Primary Palliative Care in 5 research clusters in Belgium: quasi-experimental study protocol and innovations in data collection (pro-SPINOZA)

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.

Implementation of Primary Palliative Care in five Belgian regions: A qualitative study on early identification of palliative care needs by general practitioners

“…The implementation of the CPPPC followed a stepped-wedge cluster design [ 5 , 12 ], starting in another area every six months. This time framework allowed to spread the focus groups over time, after which the CPPPC was implemented by local GPs.…”

“…Internationally, some projects pioneered early identification of palliative care needs and subsequent integrated palliative care [ 4 ]. The Belgian ‘Care Pathway for Primary Palliative Care’ (CPPPC) is one of such [ 4 , 5 ]. This CPPPC [ 5 ] was developed by the Primary and Interdisciplinary Care Department at the University of Antwerp, inspired by the Gold Standard Framework [ 6 ].…”

“…From 2014 to 2016, the CPPPC was disseminated for implementation in five Belgian areas with financial support of the Belgian National Institute for Health and Disability Insurance. Those areas were two Dutch-speaking PCNs (Antwerp and Limburg), two French-speaking PCNs (Namur and Mons) and also the bilingual region of Brussels [ 5 ]. To understand health care implementation issues it is important to know contextual factors [ 10 ].…”

Experiências de cuidadores nos cuidados paliativos e redes de suporte

“…It is an approach of care provided not only by specialists but by generalists, with the help of providing quality care at home, in the course of illness and at the end of their life. However, it is necessary to train the primary health care professionals (PHC), with the collaboration of specialists and non-specialists, through an organized care network 3 , since PHC is the gateway for users in the health system and to communicating with the entire health care network. 4 Health care networks (HCN) are considered as the solution to the problem of the fragmentation of care by levels of care.…”

“…Divinópolis (MG), Brazil. alexandresilva@ufsj.edu.br ORCID iD: http://orcid.org/0000-0001-9988-144X; 3 Nurse, Federal University of São João Del Rei/UFSJ. Divinópolis (MG), Brazil.…”