Who are hospice patients and which care is provided? A pilot study

Abstract

Background: Hospices in the Netherlands provide multidimensional care. Patients with <3 months estimated life expectancy have access to hospice care. Insight into the patients admitted to hospices and the care provided is lacking. In preparation of a large multicentre study, a pilot study was performed. Objective: Primary objective of this study was to test the appropriateness of the 1) study procedures, 2) the outcomes patient and care characteristics. Method: A cross-sectional pilot study was performed, using a descriptive explorative design. Fifteen hospices were invited to participate, the hospice patient records (HPR) from 8 patients per hospice were selected. Data was collected using self-developed (electronic-)case report form’s. Outcomes: 1) Appropriateness of procedures: availability of HPR, identified barriers and strategies used to obtain the HPR. 2) Appropriateness of patient and care characteristics: the availability of the characteristics in HPR. Per item the availability was assessed as being directly available, contextual extraction was possible, or not available at all. Results: In total 104 patients from thirteen hospices were enrolled. The nurses’ records were most available (98%), in contrast to records of volunteers (62%). Barriers in data were: a lack of knowledge on research, no access to records, ICT- and communication problems. Deployed actions were conversations with legal employees or approaching hospices from a higher level of influence. Information of the illness was most available (97%) in HPR. Experienced symptoms were the least available (10%). Conclusion: Although hospices are willing to participate, collecting HPR specifically from homecare organisations and GP was difficult and took time. Patient and care characteristics were diversified available. Final conclusion is that piloting was an important step to inform and adjust study procedures and outcomes to ensure study success of the large multicentre study.