Patient-reported outcome measures for primary hyperparathyroidism: a systematic review of measurement properties.

Health Qual Life Outcomes

Patient-Reported Outcomes, Value, and Experience (PROVE) Center, Department of Surgery, Brigham and Women's Hospital, Boston, MA, USA.

Published: April 2024

AI Article Synopsis

  • The systematic review aimed to evaluate the effectiveness of patient-reported outcome measures (PROMs) for assessing outcomes in adults with primary hyperparathyroidism (PHPT), a condition that can severely impact health-related quality of life.
  • Researchers analyzed 4,989 records and found nine relevant studies evaluating three PROMs: SF-36, PAS, and PHPQoL, discovering issues such as low-to-very low evidence certainty and insufficient content validity for PHPT patients.
  • As a result, the authors concluded that these PROMs are not recommended for use in clinical practice or research, highlighting the need for further validation or the creation of more suitable measures.

Article Abstract

Background: The quality of patient-reported outcome measures (PROMs) used to assess the outcomes of primary hyperparathyroidism (PHPT), a common endocrine disorder that can negatively affect patients' health-related quality of life due to chronic symptoms, has not been rigorously examined. This systematic review aimed to summarize and evaluate evidence on the measurement properties of PROMs used in adult patients with PHPT, and to provide recommendations for appropriate measure selection.

Methods: After PROSPERO registration (CRD42023438287), Medline, EMBASE, CINAHL Complete, Web of Science, PsycINFO, and Cochrane Trials were searched for full-text articles in English investigating PROM development, pilot studies, or evaluation of at least one PROM measurement property in adult patients with any clinical form of PHPT. Two reviewers independently identified studies for inclusion and conducted the review following the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) Methodology to assess risk of bias, evaluate the quality of measurement properties, and grade the certainty of evidence.

Results: From 4989 records, nine PROM development or validation studies were identified for three PROMs: the SF-36, PAS, and PHPQoL. Though the PAS demonstrated sufficient test-retest reliability and convergent validity, and the PHPQoL sufficient test-retest reliability, convergent validity, and responsiveness, the certainty of evidence was low-to-very low due to risk of bias. All three PROMs lacked sufficient evidence for content validity in patients with PHPT.

Conclusions: Based upon the available evidence, the SF-36, PAS, and PHPQoL cannot currently be recommended for use in research or clinical care, raising important questions about the conclusions of studies using these PROMs. Further validation studies or the development of more relevant PROMs with strong measurement properties for this patient population are needed.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10988805PMC
http://dx.doi.org/10.1186/s12955-024-02248-9DOI Listing

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