Health-related quality of life (HRQoL ) is an important outcome measure in pulmonary arterial hypertension research, but an evaluation of which patient questionnaires work best had not been done up to now. Also, different studies use different questionnaires, making it hard to compare results.
A systematic review (PROSPERO ID: CRD42024484021) was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines of Patient Reported Outcome Measures (PROMs) selected in pulmonary arterial hypertension clinical trials. PROM measurement properties were then evaluated according to the 10-step COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist and graded by recommendation for use. Finally, HRQoL was modelled into a conceptual framework using patient interviews and surveys.
The screening of 896 records identified 90 randomised controlled trials for pulmonary arterial hypertension treatments. The review sought to investigate:
- Which questionnaires were used to measure quality of life
- How good these questionnaires actually are at measuring what matters to patients
- Whether the questionnaires give reliable, accurate results
Finally, HRQoL was modelled into a conceptual framework using patient interviews and surveys.
Findings
- Only 43 out of 90 studies used quality of life questionnaires at all
- Of those, only 20 used questionnaires that were properly tested
- Only 8 studies were large enough to detect meaningful changes in patients’ lives
- Most studies used different questionnaires, making it impossible to compare results
Grading
- Grade A (recommended): EmPHasis-10 and LPHQ – these work well for pulmonary arterial hypertension patients
- Grade B (need more testing): SF-36 and EQ-5D-5L – commonly used but need more validation
Why this matters:
- Only 3 out of 90 studies used the best-recommended questionnaires
- Better, more consistent questionnaires would help researchers understand if treatments really improve patients’ daily lives
- The study created a framework to help future researchers choose the right questionnaires
The study concludes that researchers need to be more careful about which questionnaires they use to measure quality of life in pulmonary arterial hypertension patients, to better understand which treatments actually help people feel better day-to-day.
Read more at this link on the NIH National Library of Medicine
Citation
Varian F, Burney R, Pearson C, Goh ZM, Newman J, Rawlings G, Zafar H, Kiely DG, Thompson AAR, Condliffe R, Toshner M, McCormack C, Armstrong I, Peasgood T, Carlton J, Rothman AMK. Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials: a systematic review, meta-analysis and health-related quality of life framework. Eur Respir Rev. 2025 May 14;34(176):250006. doi: 10.1183/16000617.0006-2025. PMID: 40368429; PMCID: PMC12076161.
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