Development, modelling, and pilot testing of a complex intervention to support end-of-life care provided by Danish general practitioners

Abstract

Background: Most patients in end-of-life with life-threatening diseases prefer to be cared for and die at home. Nevertheless, the majority die in hospitals. GPs have a pivotal role in providing end-of-life care at patients' home, and their involvement in the palliative trajectory enhances the patient's possibility to stay at home. The aim of this study was to develop and pilot-test an intervention consisting of continuing medical education (CME) and electronic decision support (EDS) to support end-of-life care in general practice.

Methods: We developed an intervention in line with the first phases of the guidelines for complex interventions drawn up by the Medical Research Council. Phase 1 involved the development of the intervention including identification of key barriers to provision of end-of-life care for GPs and of facilitators of change. Furthermore the actual modelling of two components: CME meeting and EDS. Phase 2 focused on pilot-testing and intervention assessment by process evaluation.

Results: In phase 1 lack of identification of patients at the end of life and limited palliative knowledge among GPs were identified as barriers. The CME meeting and the EDS were developed. The CME meeting was a four-hour educational meeting performed by GPs and specialists in palliative care. The EDS consisted of two parts: a pop-up window for each patient with palliative needs and a list of all patients with palliative needs in the practice. The pilot testing in phase 2 showed that the CME meeting was performed as intended and 120 (14%) of the GPs in the region attended. The EDS was integrated in existing electronic records but was shut down early for external reasons; 50 (5%) GPs signed up. The pilot-testing demonstrated a need to strengthen the implementation as attending rate was low in the current set-up.

Conclusion: We developed a complex intervention to support GPs in providing end-of-life care. The pilot-test showed general acceptance of the CME meetings. The EDS was shut down early and needs further evaluation before examining the whole intervention in a larger study, where evaluation could be based on patient-related outcomes and impact on end-of-life care.

Trial registration: Clinicaltrials.gov ( NCT02050256 ) January 30, 2014.

Keywords: COPD; Cancer; Clinical decision support systems; Complex intervention; Continuing medical education; Denmark; End-of-life care; General practice; Palliative care.

Fig. 1

The EDS pop-up window generated in the medical records to be filled in by GP. 1: Directly linked to the EORTC QLQ-C15-PAL [55] in the palliative guideline [17]: ready to print and hand out to the patient. 2: ECOG Performance Status [56]. * The information is automatically transferred to the palliative list

Fig. 2

The list of all patients with palliative needs in the practice divided into patients with cancer and COPD, respectively. The tab for COPD contains additional information on smoking status, number of exacerbations within the last year and MRC breathlessness score. All information shown in the figure is made up for the figure and not based on real data. CPR number: Personal identification number allocated to every Danish citizen. Diagnosis: The cancer diagnosis (ICD 10). When the cursor marks the diagnosis, it is written in words. Term.decl: Terminal declaration. Data retrieved from the pop-up window. Perf. Status: ECOG performance status [56]. Data retrieved from the pop-up window. C and P diag: Comorbidities and psychiatric comorbidities; a dot means that the patient is registered with comorbidity (written in text when the cursor is dragged to the dot). Data retrieved automatically from the EPR. GP/staff: The patient’s contact GP/staff in the practice(s). Data retrieved from the pop-up window. Specialist care: The patient receives specialist palliative care. Data retrieved from the pop-up window. Latest pop-up window: A marker indicates that a note has been left by the GP/staff in the pop-up window (can be read when the cursor is dragged to the dot)

Fig. 3

The distribution (% of responses (n = 115)) of GPs’ self-reported usefulness of attending the CME and the demonstrated tools. Made by the Committee for Quality Improvement and Continuing Medical Education in the Central Denmark Region [31] as a part of the evaluation of the CME sessions