Refining a Checklist for Reporting Patient Populations and Service Characteristics in Hospice and Palliative Care Research

Author version made available in accordance with the publisher's policy. © 2012. This manuscript version is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/Context and Objective Diagnoses and prognoses vary widely across sub-populations of people referred to specialist palliative care services; variations also exist in the way these services are configured. These variations create substantial heterogeneity in palliative care populations enrolled in research studies which, in turn, limits the generalizability of study results. This paper reports on the refinement of a checklist of patient/research participant and service/research site descriptors; the checklist can be completed for any palliative care research study. Its purposes are to: (1) facilitate the design and reporting of rigorous palliative care research, and thereby, (2) aid clinicians in appropriately applying research evidence in clinical practice. Methods A previously published framework (five domains; 13 core sub-domains and 25 noncore sub-domains) was used to code all research articles (n=189) published over a 12-month period in the three leading palliative care journals internationally. Results In descending order, the most frequently reported sub-domains were: patient age, patient gender and patient diagnosis; model of service delivery and patient performance status. Data in certain sub-domains, such as time from referral to death, socio-economic indices and ethnicity, were rarely reported; none of the included studies reported whole-of-service or whole-of-population data. With a total of 2,457 core sub-domains that could have been reported (189x13), the included studies provided data on 30% (746/2457). A simplified list of sub-domains is proposed. Different domains are now identified for different study populations in palliative care. Conclusion Checklists such as CONSORT focus mainly on internal validity. The proposed checklist adds a checklist specific to the content of palliative care, focusing on external validity and the study population. Key words: study characteristics; reporting guidelines; publishing/standards; quality controls; checklists; applicability; generalisabilit