Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2022 Jul;64(1):e53-e60.
doi: 10.1016/j.jpainsymman.2022.03.006. Epub 2022 Mar 23.

The Design of a Data Management System for a Multicenter Palliative Care Cohort Study

Russell T Nye  1 , Douglas L Hill  2 , Karen W Carroll  3 , Jackelyn Y Boyden  2 , Hannah Katcoff  4 , Heather Griffis  4 , Diego Campos  5 , Matt Hall  6 , Joanne Wolfe  7 , Chris Feudtner  2
Affiliations
Review

The Design of a Data Management System for a Multicenter Palliative Care Cohort Study

Russell T Nye et al. J Pain Symptom Manage. 2022 Jul.

Abstract

Context: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management.

Objective: To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies.

Methods: The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment.

Conclusions: Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.

Keywords: Cohort studies; Data management; Medical record linkage; Multicenter study; Palliative care.

PubMed Disclaimer

Figures

Figure 1 –
Figure 1 –
Branching logic structure of information collection in the parent questionnaire, based on parents’ preferred language and child’s age
Figure 2 –
Figure 2 –
SHARE database linkage
Figure 3 –
Figure 3 –
Linkage of SHARE REDCap datasets and PHIS data
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Carlson MD, Morrison RS. Study design, precision, and validity in observational studies. J Palliat Med 2009;12:77–82. - PMC - PubMed
    1. Euser AM, Zoccali C, Jager KJ, Dekker FW. Cohort studies: prospective versus retrospective. Nephron Clin Pract 2009;113:c214–7. - PubMed
    1. Song JW, Chung KC. Observational studies: cohort and case-control studies. Plast Reconstr Surg 2010;126:2234–2242. - PMC - PubMed
    1. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011;127:1094–101. - PubMed
    1. Friedel M, Aujoulat I, Dubois AC, Degryse JM. Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review. Pediatrics 2019;143. - PubMed

Publication types