Patient-Reported Outcome Measures Used in Primary Hyperparathyroidism: A Scoping Review

Background: Standardized measuring tools, such as patient-reported outcome measures (PROMs), are needed to sufficiently measure the effect of an intervention or to describe patterns of disease. The extent to which PROMs have been used in primary hyperparathyroidism (PHPT) research is undefined. We conducted this scoping review to delineate the current landscape of PROMs used in research involving patients with PHPT. Methods: Six databases were systematically searched, and two independent reviewers identified all primary research articles that involved patients with PHPT and used PROMs. Characteristics of the identified studies and the PROMs were collated. Results: We examined 243 studies in full. Of these, 147 (49.7%) reported on symptoms or other health-related quality of life constructs that could be measured with PROMs but were not. In total, 96 (50.3%) studies used at least one PROM and were included. The median number of PROMs used per study was one (interquartile range 1–2), and 36 unique PROMs were identified. The three most frequently used PROMs were the 36-item Short Form Health Survey (42 studies), the Parathyroidectomy Assessment of Symptoms (20 studies), and the Beck Depression Inventory (12 studies). Symptoms and mental health constructs (e.g., anxiety, depression) were the most frequently assessed. Validity evidence for use in patients with PHPT was identified for only three PROMs: the 36-item Short Form Health Survey, Parathyroidectomy Assessment of Symptoms, and the Primary Hyperparathyroidism Quality of Life Questionnaire. All others were validated for use in patients without PHPT. Conclusions: There are missed opportunities in the rigor of health-related quality of life measurement in PHPT research. Future clinical research should emphasize proper application of PROMs to attain valid conclusions.