State of the Art of Patient-reported Outcomes in Acromegaly or GH Deficiency: A Systematic Review and Meta-analysis.

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Abstrakt

Tytuł:: State of the Art of Patient-reported Outcomes in Acromegaly or GH Deficiency: A Systematic Review and Meta-analysis.
Autorzy:: van der Meulen M; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands.
Zamanipoor Najafabadi AH; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands.; University Neurosurgical Center Holland, Leiden University Medical Center, Haaglanden Medical Centre and Haga Teaching Hospital, Leiden and The Hague, The Netherlands.
Broersen LHA; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands.
Schoones JW; Directorate of Research Policy, Leiden University Medical Center, Leiden, The Netherlands.
Pereira AM; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands.
van Furth WR; University Neurosurgical Center Holland, Leiden University Medical Center, Haaglanden Medical Centre and Haga Teaching Hospital, Leiden and The Hague, The Netherlands.
Claessen KMJA; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands.
Biermasz NR; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands.
Źródło:: The Journal of clinical endocrinology and metabolism [J Clin Endocrinol Metab] 2022 Apr 19; Vol. 107 (5), pp. 1225-1238.
Typ publikacji:: Journal Article; Meta-Analysis; Systematic Review; Research Support, Non-U.S. Gov't
Język:: English
Imprint Name(s):: Publication: 2017- : New York : Oxford University Press
Original Publication: Springfield, Ill. : Charles C. Thomas
MeSH Terms:: Acromegaly*/diagnosis
Acromegaly*/therapy
Human Growth Hormone*/adverse effects
Adult ; Humans ; Patient Reported Outcome Measures ; Prospective Studies ; Quality of Life
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Grant Information:: Chiasma, Inc
Contributed Indexing:: Keywords: acromegaly; growth hormone deficiency; patient-reported outcomes; prospective studies; quality of life; trials
Substance Nomenclature:: 12629-01-5 (Human Growth Hormone)
Entry Date(s):: Date Created: 20211206 Date Completed: 20220420 Latest Revision: 20220716
Update Code:: 20240105
PubMed Central ID:: PMC9016456
DOI:: 10.1210/clinem/dgab874
PMID:: 34871425
: Czasopismo naukowe

Context: Insight into the current landscape of patient-reported outcome (PRO) measures (PROM) and differences between PROs and conventional biochemical outcomes is pivotal for future implementation of PROs in research and clinical practice. Therefore, in studies among patients with acromegaly and growth hormone deficiency (GHD), we evaluated (1) used PROMs, (2) their validity, (3) quality of PRO reporting, (4) agreement between PROs and biochemical outcomes, and (5) determinants of discrepancies.
Evidence Acquisition: We searched 8 electronic databases for prospective studies describing both PROs and biochemical outcomes in acromegaly and GHD patients. Quality of PRO reporting was assessed using the International Society for Quality of Life Research (ISOQOL) criteria. Logistic regression analysis was used to evaluate determinants.
Evidence Synthesis: Ninety studies were included (acromegaly: n = 53; GHD: n = 37). Besides nonvalidated symptom lists (used in 37% of studies), 36 formal PROMs were used [predominantly Acromegaly Quality of Life Questionnaire in acromegaly (43%) and Quality of Life-Assessment of Growth Hormone Deficiency in Adults in GHD (43%)]. Reporting of PROs was poor, with a median of 37% to 47% of ISOQOL items being reported per study. Eighteen (34%) acromegaly studies and 12 (32%) GHD studies reported discrepancies between PROs and biochemical outcomes, most often improvement in biochemical outcomes without change in PROs.
Conclusions: Prospective studies among patients with acromegaly and GHD use a multitude of PROMs, often poorly reported. Since a substantial proportion of studies report discrepancies between PROs and biochemical outcomes, PROMs are pivotal in the evaluation of disease activity. Therefore, harmonization of PROs in clinical practice and research by development of core outcome sets is an important unmet need.
(© The Author(s) 2021. Published by Oxford University Press on behalf of the Endocrine Society.)

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