Patient-reported outcomes in refractory hormone-producing pituitary adenomas: an unmet need

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.

Aerobic exercise interventions to address impaired quality of life in patients with pituitary tumors

“…While various questionnaires and scales can be useful to measure quality of life in patients, they are still fraught with inconsistent application and risk of bias. A recent review by van Trigt et al analyzed 20 studies reporting patient-reported outcome measures in patients with refractory hormone-producing adenomas, and found significant variance in conclusions across the studies, compared to patients in biochemical remission [51]. Digital phenotyping has become increasingly utilized, in which data from personal digital devices, in particular smartphones, are gathered to measure behavioral patterns pertaining to sleep, physical mobility, social interactions, and cognitive functioning, among others [52].…”