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... Show morePurpose: 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. Show less
Koppelaar-van Eijsden, H.M.; Schermer, T.R.; Bruintjes, T.D. 2022
Objective: To critically appraise and summarize the quality of the measurement properties of the Dizziness Handicap Inventory's (DHI) in adult patients with complaints of dizziness. Databases... Show moreObjective: To critically appraise and summarize the quality of the measurement properties of the Dizziness Handicap Inventory's (DHI) in adult patients with complaints of dizziness. Databases Reviewed: Pubmed, Embase, and CINAHL. Methods: The selected literature databases were systematically searched to identify studies investigating one or more measurement properties of the DHI. From the included studies, relevant data were extracted, their methodological quality was assessed, the results were synthesized and the evidence was graded and summarized according the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. Results: The search strategy resulted in 768 eligible publications, 42 of which were included in the review. Overall, evidence on the DHI's content validity was either lacking or limited and of low quality. Moderate evidence was found for inconsistent structural validity, sufficient construct validity and borderline sufficient responsiveness. Based on the studies included, low evidence was found for sufficient reliability of the DHI total score. No evidence synthesis could be done for the DHI's internal consistency due to multidimensionality (i.e., lack of support of the original subscales) and for its measurement error due to a lack of published information on the minimal important change. Conclusions: The current evidence for a number of measurement properties of the DHI is suboptimal. Because of its widespread use and the current lack of a better alternative, researchers can use the DHI when assessing handicapping effects imposed by dizziness, but they should be aware of its limitations. Moreover, we recommend using the DHI total score only and also to consider adding an instrument with more favorable measurement properties when assessing self-perceived handicap in patients with dizziness. Show less
Meulen, M. van der; Najafabadi, A.Z.H.; Lobatto, D.J.; Andela, C.D.; Vlieland, T.P.M.V.; Pereira, A.M.; ... ; Biermasz, N.R. 2020
Purpose Pituitary diseases severely affect patients' health-related quality of life (HRQoL). The most frequently used generic HRQoL questionnaire is the Short Form-36 (SF-36). The shorter 12-item... Show morePurpose Pituitary diseases severely affect patients' health-related quality of life (HRQoL). The most frequently used generic HRQoL questionnaire is the Short Form-36 (SF-36). The shorter 12-item version (SF-12) can improve efficiency of patient monitoring. This study aimed to determine whether SF-12 can replace SF-36 in pituitary care. Methods In a longitudinal cohort study (August 2016 to December 2018) among 103 endoscopically operated adult pituitary tumor patients, physical and mental component scores (PCS and MCS) of SF-36 and SF-12 were measured preoperatively, and 6 weeks and 6 months postoperatively. Chronic care was assessed with a cross-sectional study (N = 431). Mean differences and agreement between SF-36 and SF-12 change in scores (preoperative vs. 6 months) were assessed with intraclass correlation coefficients (ICC) and limits of agreement, depicting 95% of individual patients. Results In the longitudinal study, mean differences between change in SF-36 and SF-12 scores were 1.4 (PCS) and 0.4 (MCS) with fair agreement for PCS (ICC = 0.546) and substantial agreement for MCS (ICC = 0.931). For 95% of individual patients, the difference between change in SF-36 and SF-12 scores varied between -14.0 and 16.9 for PCS and between -7.8 and 8.7 for MCS. Cross-sectional results showed fair agreement for PCS (ICC = 0.597) and substantial agreement for MCS (ICC = 0.943). Conclusions On a group level, SF-12 can reliably reproduce MCS in pituitary patients, although PCS is less well correlated. However, individual differences between SF-36 and SF-12 can be large. For pituitary diseases, alternative strategies are needed for concise, but comprehensive patient-reported outcome measurement. Show less
Objective: The Assessments of SpondyloArthritis international Society Health Index (ASAS HI), estimates the impact of Spondyloarthritis (SpA) on global functioning and health. This article assesses... Show moreObjective: The Assessments of SpondyloArthritis international Society Health Index (ASAS HI), estimates the impact of Spondyloarthritis (SpA) on global functioning and health. This article assesses the construct validity, reliability and responsiveness of the Portuguese version of the ASAS HI.Patients And Methods: Patients fulfilling ASAS classification criteria for axial (axSpA) or peripheral SpA (pSpA) were included. Construct validity was assessed through Spearman's correlation analysis with other health outcomes. Discriminant validity was tested comparing the ASAS HI across disease activity and functional states using the Kruskal-Wallis test. Internal consistency was assessed by Cronbach's alpha, and test-retest reliability by intraclass correlation coefficients (ICC). Responsiveness was evaluated by the standardized response mean (SRM) in patients with active disease who required therapy escalation.Results: Among the 91 patients included, 67% were male, mean (SD) age 47.2 (12.9) years, 63 patients with axSpA and 28 patients with pSpA. The hypothesis defined a priori to test construct validity were confirmed. The ASAS HI showed ability to discriminate between patients with different disease activity and functional states (p<0.001). Internal consistency (Cronbach's alpha: 0.88) and test-retest reliability [ICC=0.76 (95%CI 0.09-0.91)] were good. Responsiveness was moderate (SRM=-0.53). The smallest detectable change was 3.0.Conclusions: The Portuguese version of the ASAS HI is a comprehensible questionnaire that is valid, reliable and responsive. It can be used to assess the impact of SpA and its treatment on functioning and health, in clinical practice and for research purposes. Show less
