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Patient-reported outcomes in refractory hormone-producing pituitary adenomas: an unmet need.
van Trigt, Victoria R; Pelsma, Iris C M; Biermasz, Nienke R.
Affiliation
  • van Trigt VR; Department of Medicine, Division of Endocrinology, and Center for Endocrine Tumors Leiden, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands. V.R.van_Trigt@lumc.nl.
  • Pelsma ICM; Department of Medicine, Division of Endocrinology, and Center for Endocrine Tumors Leiden, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands.
  • Biermasz NR; Department of Medicine, Division of Endocrinology, and Center for Endocrine Tumors Leiden, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands.
Pituitary ; 26(3): 307-317, 2023 Jun.
Article in En | MEDLINE | ID: mdl-37014498
ABSTRACT

PURPOSE:

To describe quality and outcomes of patient-reported outcome (PRO) measures (PROMs) used in patients with refractory hormone-producing pituitary adenomas, and to provide an overview of PROs in these challenging pituitary adenomas.

METHODS:

Three databases were searched for studies reporting on refractory pituitary adenomas. For the purpose of this review, refractory adenomas were defined as tumors resistant to primary therapy. General risk of bias was assessed using a component approach and the quality of PROM reporting was assessed using the International Society for Quality of Life Research (ISOQOL) criteria.

RESULTS:

20 studies reported on PROMs in refractory pituitary adenomas, using 14 different PROMs, of which 4 were disease specific (median general risk of bias score 33.5% (range 6-50%) and ISOQOL score 46% (range 29-62%)). SF-36/RAND-36 and AcroQoL were most frequently used. Health-related quality of life in refractory patients (measured by AcroQoL, SF-36/Rand-36, Tuebingen CD-25, and EQ-5D-5L) varied greatly across studies, and was not always impaired compared to patients in remission.

CONCLUSION:

There is a scarcity of data on PROs in the subset of pituitary adenomas that is more difficult to treat, e.g., refractory and these patients are difficult to isolate from the total cohort. The patients' perspective on quality of life, therefore, remains largely unknown in refractory patients. Thus, PROs in refractory pituitary adenomas require adequate analysis using properly reported disease specific PROMs in large cohorts to enable appropriate interpretation for use in clinical practice.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Pituitary Neoplasms / Adenoma Aspects: Patient_preference Limits: Humans Language: En Journal: Pituitary Journal subject: ENDOCRINOLOGIA Year: 2023 Document type: Article Affiliation country: Países Bajos

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Pituitary Neoplasms / Adenoma Aspects: Patient_preference Limits: Humans Language: En Journal: Pituitary Journal subject: ENDOCRINOLOGIA Year: 2023 Document type: Article Affiliation country: Países Bajos