Evidence map›Paper›PMID 35339611›Full record

ReviewJournal of pain and symptom management2022

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

Russell T Nye, Douglas L Hill, Karen W Carroll, Jackelyn Y Boyden, Hannah Katcoff, Heather Griffis, Diego Campos, Matt Hall, Joanne Wolfe, Chris Feudtner

Open access · greenAbstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Journal of pain and symptom management, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
1.2field-weighted citation impact, top 23% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 6 citations in OpenAlex.

  1. Article
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors at 3 institutions in 1 country.

Russell T NyeJustin Ingerman Center for Palliative Care (R.T.N., D.L.H., K.W.C., J.Y.B., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Data Science and Biostatistics Unit (R.T.N., H.K., H.G.), Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. Electronic address: nyer@chop.edu.
Douglas L HillJustin Ingerman Center for Palliative Care (R.T.N., D.L.H., K.W.C., J.Y.B., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Division of General Pediatrics (D.L.H., J.Y.B., C.F.), The Children's Hospital of Philadelphia Philadelphia, Pennsylvania, USA.
Karen W CarrollJustin Ingerman Center for Palliative Care (R.T.N., D.L.H., K.W.C., J.Y.B., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Jackelyn Y BoydenJustin Ingerman Center for Palliative Care (R.T.N., D.L.H., K.W.C., J.Y.B., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Division of General Pediatrics (D.L.H., J.Y.B., C.F.), The Children's Hospital of Philadelphia Philadelphia, Pennsylvania, USA.
Hannah KatcoffData Science and Biostatistics Unit (R.T.N., H.K., H.G.), Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Heather GriffisData Science and Biostatistics Unit (R.T.N., H.K., H.G.), Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Diego CamposDepartment of Biomedical and Health Informatics (D.C.), Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Matt HallChildren's Hospital Association (M.H.), Lenexa, Kansas, USA.
Joanne WolfeDepartment of Psychosocial Oncology and Palliative Care (J.W.), Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics, Boston Children's Hospital (J.W.), Boston, Massachusetts, USA.
Chris FeudtnerJustin Ingerman Center for Palliative Care (R.T.N., D.L.H., K.W.C., J.Y.B., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Division of General Pediatrics (D.L.H., J.Y.B., C.F.), The Children's Hospital of Philadelphia Philadelphia, Pennsylvania, USA.
Children's Hospital of Philadelphia · USBoston Children's Hospital · USChildren's Hospital Association · US

Funding

Pediatric Palliative Care Research Network SHARE ProjectR01NR016223 · NINR · CHILDREN'S HOSP OF PHILADELPHIA · PI FEUDTNER, JOHN CHRIS, WOLFE, JOANNE · 2016 to 2020
$2.8M
NINR NIH HHS R01 NR016223
6 · The paper itself

Abstract

contextProspective 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.

objectiveTo 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.

methodsThe 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.

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

Indexed as

Data ManagementPalliative CareChildCohort StudiesHumansMulticenter Studies as TopicProspective StudiesSurveys and QuestionnairesUnited StatesCohort studiesData managementMedical record linkageMulticenter studyPalliative care

Identifiers

PMID35339611
PMCPMC10484234
OpenAlexW4220773410

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.