Refining a Checklist for Reporting Patient Populations and Service Characteristics in Hospice and Palliative Care Research
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Date
2012-03-21
Authors
Currow, David Christopher
Tieman, Jennifer
Greene, Aine
Zafar, S Yousuf
Wheeler, Jane L
Abernethy, Amy Pickar
Journal Title
Journal ISSN
Volume Title
Publisher
Elsevier
Rights
© 2012 U.S. Cancer Pain Relief Committee,
Published by Elsevier Inc. All rights reserved.
Rights Holder
U.S. Cancer Pain Relief Committee,
Published by Elsevier Inc.
Abstract
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; generalisability
Description
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/
Keywords
Citation
Currow DC, Tieman JJ, Greene A, Zafar SY, Wheeler JL, Abernethy AP (2012) Refining a checklist for reporting patient populations and service characteristics in hospice and palliative care research, Journal of Pain and Symptom Management, 2012 May; 43(5):902-10