Evidence map›Paper›PMID 40327215›Full record

ArticleJournal of patient-reported outcomes2025

Engaging patients, family caregivers and healthcare providers to develop metrics tailored to a palliative care population: a content validity process.

Taylor Shorting, Madeline McCoy, Marianne Weiss, Jessica Schue, Natalie C Ernecoff, Shirley H Bush, Genevieve Lalumière, Jill Rice, Meaghen Hagarty, Daniel Vincent and 7 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of patient-reported outcomes, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

17 authors.

Taylor ShortingBruyère Health Research Institute, 43 Bruyère Street, Ottawa, ON, K1N 5C8, Canada. Tshorting@bruyere.org.ORCID http://orcid.org/0000-0002-2781-9572
Madeline McCoyBruyère Health Research Institute, 43 Bruyère Street, Ottawa, ON, K1N 5C8, Canada.
Marianne WeissMarquette University, 1250 W Wisconsin Ave, Milwaukee, WI, 53233, USA.
Jessica SchueJohns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street Baltimore, Baltimore, MD, 21205, USA.
Natalie C ErnecoffRAND Corporation, 4570 Fifth Avenue, Suite 600, Pittsburgh, PA, 15213, USA.
Shirley H BushBruyère Health Research Institute, 43 Bruyère Street, Ottawa, ON, K1N 5C8, Canada.
Genevieve LalumièreBruyère Health, 60 Cambridge Street, Ottawa, ON, K1R 7A5, Canada.
Jill RiceBruyère Health Research Institute, 43 Bruyère Street, Ottawa, ON, K1N 5C8, Canada.
Meaghen HagartyBruyère Health, 60 Cambridge Street, Ottawa, ON, K1R 7A5, Canada.
Daniel VincentDepartment of Medicine, Division of Palliative Care, University of Ottawa, 75 Laurier Ave E, Ottawa, ON, K1N 6N5, Canada.
Kirsten WentlandtUniversity Health Network-Toronto General Hospital, 14EB-228E 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Daniel DavidNew York University College of Nursing, 433 First Avenue Room 422, NewYork, 10010, USA.
Krystal Kehoe MacLeodBruyère Health Research Institute, 43 Bruyère Street, Ottawa, ON, K1N 5C8, Canada.
Vinay Kumar MysoreConsultant, Brooklyn, New York, USA.
Meghan SavignyConsultant, Vancouver, Canada.
Edward FitzgibbonDepartment of Medicine, Division of Palliative Care, University of Ottawa, 75 Laurier Ave E, Ottawa, ON, K1N 6N5, Canada.
Sarina R IsenbergBruyère Health Research Institute, 43 Bruyère Street, Ottawa, ON, K1N 5C8, Canada.

Funding

Canadian Frailty Network ECR2022-028Canadian Institutes of Health Research (CIHR) TRC-184527
6 · The paper itself

Abstract

backgroundAssessment of patient readiness for hospital discharge has been advocated as an important component of discharge preparation. However, no measures focused on hospital-to-home transitions for patients receiving a palliative approach to care, or the associated difficulties in coping at home after hospital discharge, have been developed to date. Using a co-design approach, the purpose of this study was to (1) adapt two scales to a palliative care population, one of which was developed to assess readiness for the hospital-to-home transition and another developed to assess difficulty in coping post-transition and to (2) test the content validity of both scales from the perspectives of patients, family caregivers, and healthcare providers. The scales chosen for adaptation were the Readiness for Hospital Discharge Scale and Post-Discharge Coping Difficulty Scale. METHODOLOGY: The research team made initial adaptations to scale language prior to developing three parallel versions of each scale to be patient-, family caregiver-, and healthcare provider-facing. We conducted content validity testing of the items on both scales by asking each participant group to rate scale items on their usefulness, and to provide suggestions on ways items could be improved. We calculated the Item Content Validity Index and a modified Kappa statistic for each scale item, and calculated the Scale Content Validity Index for each of the three versions of the scales. Refinements were informed by qualitative feedback provided by participants during the content validity process. Final refinements were informed by members of a Patient and Family Advisory Council, and healthcare provider research team members.

resultsModerate modifications were required to the three versions of both scales. Modifications included adding items, modifying item language, and adding examples in parentheses to enhance item context. Patients, family caregivers, and healthcare providers deemed the research team's initial modifications to the scales useful, as evidenced by each scale yielding a Scale Content Validity Index of higher than 0.5.

conclusionThe methodology provided can be used as an example of ways to engage and leverage the experiences of healthcare system users and healthcare providers throughout the outcome measures development process. The next steps will be to utilize the adapted scales as intervention outcome measures in a subsequent implementation study.

Indexed as

CaregiversHealth PersonnelPalliative CarePatient DischargeAdaptation, PsychologicalAdultAgedAged, 80 and overFemaleHumansMaleMiddle AgedPsychometricsReproducibility of ResultsSurveys and QuestionnairesCo-design, measurement scaleContent validityHospital discharge, discharge readiness, copingPalliative carePatient-reported outcomes

Identifiers

PMID40327215
PMCPMC12055745

What OpenQuestion holds

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LicenceCC BY
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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.