Zigler, Christina K, Yousefian, Charis, Mangrum, Rikki et al. · Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026 · DOI
Researchers asked 30 adults with Long COVID to review four existing survey questionnaires to see if the questions were clear and relevant to their condition. Participants reported they could understand most questions and found them relevant to their experiences. The study also identified ways these surveys could be improved, such as simplifying instructions and shortening length. These are preliminary findings from one qualitative study, and further testing of these surveys is planned.
By analogy, selecting outcome measures that Long COVID patients find comprehensible and relevant may strengthen clinical trials for post-infectious conditions. Since ME/CFS shares symptom overlap with Long COVID (including post-exertional malaise, cognitive symptoms, and autonomic dysregulation), the methodological approach of cognitive debriefing and the feedback on survey burden may be informative for researchers designing or refining ME/CFS outcome assessment tools, though direct applicability to ME/CFS populations remains to be established.
This study does not validate these outcome measures for use in actual clinical trials or confirm they will reliably detect treatment effects. It does not establish whether these measures perform equivalently across different Long COVID phenotypes, disease durations, or severity levels. It does not demonstrate that simplifying survey wording or length will improve data quality or reduce participant dropout in real-world trials. The study was conducted only in English-speaking participants, so findings do not extend to non-English-speaking populations.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
The first block is for the primary paper and is the citation you should use in research work. The atlas-snapshot line only applies if you are specifically referring to this atlas’s reading of the paper on the date shown.
Primary citation
Zigler, Christina K, Yousefian, Charis, Mangrum, Rikki, Faulstich, Maliyah, O'Brien, Sean M, Maughan, Christine, et al. (2026). Item comprehension and content coverage of patient-reported outcome measures for long COVID: a qualitative study.. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. https://doi.org/10.1007/s11136-026-04340-7
BibTeX
@article{mecfsatlas-zigler-2026-item-comprehension,
author = {Zigler, Christina K and Yousefian, Charis and Mangrum, Rikki and Faulstich, Maliyah and O'Brien, Sean M and Maughan, Christine and Cerda, Marta and Bateman, Lucinda and Shibao, Cyndya A and Make, Barry and Jason, Leonard A and Weinfurt, Kevin P and Zimmerman, Kanecia O},
title = {Item comprehension and content coverage of patient-reported outcome measures for long COVID: a qualitative study.},
journal = {Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation},
year = {2026},
doi = {10.1007/s11136-026-04340-7},
note = {PubMed: 42493630},
url = {https://www.mecfsatlas.com/evidence/zigler-2026-item-comprehension},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-07-27. https://www.mecfsatlas.com/evidence/zigler-2026-item-comprehension
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