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ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026

Item comprehension and content coverage of patient-reported outcome measures for long COVID: a qualitative study.

Christina K Zigler, Charis Yousefian, Rikki Mangrum, Maliyah Faulstich, Sean M O'Brien, Christine Maughan, Marta Cerda, Lucinda Bateman, Cyndya A Shibao, Barry Make and 3 more

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

13 authors.

Christina K ZiglerDepartment of Physical Medicine and Rehabilitation, School of Medicine, University of Pittsburgh, 3471 Fifth Ave, Suite 910, Pittsburgh, PA, 15213, USA. cek53@pitt.edu.ORCID http://orcid.org/0000-0002-8996-7757
Charis YousefianVector Psychometric Group, LLC, Chapel Hill, NC, USA.
Rikki MangrumVector Psychometric Group, LLC, Chapel Hill, NC, USA.
Maliyah FaulstichDuke Clinical Research Institute, Duke University School of Medicine, Durham, NC, USA.
Sean M O'BrienDuke Clinical Research Institute, Duke University School of Medicine, Durham, NC, USA.
Christine MaughanRECOVER Patient, Caregiver, or Community Representative, Durham, NC, USA.
Marta CerdaRECOVER Patient, Caregiver, or Community Representative, Durham, NC, USA.
Lucinda BatemanBateman Horne Center, Salt Lake City, UT, USA.
Cyndya A ShibaoDepartment of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
Barry MakeDepartment of Medicine, National Jewish Health, Denver, CO, USA.
Leonard A JasonDepartment of Psychology, DePaul University, Chicago, IL, USA.
Kevin P WeinfurtDepartment of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Kanecia O ZimmermanDuke Clinical Research Institute, Duke University School of Medicine, Durham, NC, USA.

Funding

ACTIV Integration of Host-targeting Therapies for COVID-19 Administrative Coordinating CenterOT2HL156812 · NHLBI · RESEARCH TRIANGLE INSTITUTE · PI NOLEN, TRACY L, THOMAS, SONIA M · 2020 to 2024
$1270.7M
NHLBI NIH HHS OT2 HL156812NIH HHS OT2HL156812
6 · The paper itself

Abstract

purposeFit-for-purpose clinical outcome assessments are essential to inform medical product development, but outcome measures for Long COVID, a new and devastating phenomenon, have not yet been established. The objective of this study was to evaluate item comprehension and content coverage of four selected patient-reported outcome measures (PROMs) for use in a Long COVID clinical trial platform.

methodsA noninterventional, cross-sectional qualitative cognitive debriefing study of English-speaking adults with Long COVID was conducted, with interviews taking place virtually between August and November 2024. Recruitment was managed by a research firm. The main outcomes of the study were participant comprehension and relevance of the selected PROMs, including symptoms and functioning as measured by modified versions of the DePaul Symptom Questionnaire-Post-Exertional Malaise, Everyday Cognition Scale 2 questionnaire, Composite Autonomic Symptom Score-31, and Orthostatic Hypotension Questionnaire.

resultsParticipants were able to comprehend most items and indicated they were relevant to their experiences with Long COVID. Participants identified potential enhancements to the measures such as simplifying instructions, modifying item wording, and reducing PROM length. Interviewers observed cognitive burden during some of the interviews.

conclusionsBased on the overall support for comprehension and relevance of items within each measure, use of these measures within the Long COVID clinical trial platform was generally supported. Future work, including qualitative and quantitative studies, could improve the experience of PROM data collection in this context. Clinical trial protocols for Long COVID should carefully consider burden on participants when collecting PROMs.

Indexed as

ComprehensionCOVID-19Patient Reported Outcome MeasuresAdultAgedCross-Sectional StudiesFemaleHumansInterviews as TopicMaleMiddle AgedPost-Acute COVID-19 SyndromeQualitative ResearchQuality of LifeSARS-CoV-2Surveys and QuestionnairesContent coverageItem comprehensionLong COVIDPatient-reported outcome measuresQualitative research

Identifiers

PMID42493630
PMCPMC13396033

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LicenceCC BY-NC-ND
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Registered trials

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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.