ReviewJournal of patient-reported outcomes2026
Targeted literature review to understand the patient experience of essential thrombocythemia and evaluate existing clinical outcome assessment measures.
Review in Journal of patient-reported outcomes, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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.
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.
Who cites it
1 citing paper in PubMed.
- Targeted literature review to understand the patient experience of essential thrombocythemia and evaluate existing clinical outcome assessment measures.Journal of patient-reported outcomes · 2026Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe use of Clinical Outcome Assessments (COA) instruments in blood cancers such as myeloproliferative neoplasms (MPN) is widely documented, however little is known about Essential Thrombocythemia (ET). A targeted literature review was conducted to identify the concepts of interest to the ET population and to develop a conceptual framework. Using this framework, identification and review of COA instruments will help determine if there are existing instruments fit for purpose for use in ET studies. METHODOLOGY: Targeted reviews in May and October 2023 synthesized the literature on ET symptoms and impacts to derive a conceptual model and identify suitable COAs. Eligible articles consisted of ET only populations and extended to MPN samples that included ET patients. A gap analysis was conducted on selected instruments.
resultsOf the 890 abstracts reviewed, 206 were included in the analysis. An ET conceptual model that encompassed disease-defining concepts (fatigue most common), proximal, distal, and general life impacts was created. MPN specific measures such as the Myelofibrosis Symptom Assessment Form v4.0 (MFSAF), and Myeloproliferative Neoplasm Symptom Assessment Form Total Symptom Score (MPN-SAF TSS; MPN-10), European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core Questionnaire (EORTC QLQ-C30), Patient-Reported Outcomes Measurement Information System (PROMIS) - Fatigue, and Brief Fatigue Inventory (BFI) were deemed the most appropriate for the gap analysis. Each had strengths and limitations related to conceptual coverage, evidence for measurement properties, and feasibility for use in clinical trials.
conclusionsThe MFSAF v4.0, PROMIS-Fatigue, and EORTC QLQ-C30 are considered appropriate for use in deriving trial endpoints in ET; however further work is needed to assess the fitness-for-purpose in the ET population as most validation studies were performed in mixed MPN or oncology samples.
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Registered trials
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.