scholarly journals A Novel Patient-Derived Conceptual Model of the Impact of Celiac Disease in Adults: Implications for Patient-Reported Outcome and Health-Related Quality-of-Life Instrument Development

2017 ◽  
Vol 20 (4) ◽  
pp. 637-643 ◽  
Author(s):  
Daniel A. Leffler ◽  
Sarah Acaster ◽  
Katy Gallop ◽  
Melinda Dennis ◽  
Ciarán P. Kelly ◽  
...  
2021 ◽  
pp. 030089162110250
Author(s):  
Emma G Walshaw ◽  
Mike Smith ◽  
Dae Kim ◽  
Jonathan Wadsley ◽  
Anastasios Kanatas ◽  
...  

This systematic review provides a summary of all studies published between 2000 and 2019 using a health-related quality of life (HRQOL) patient-completed questionnaire to report outcomes following diagnosis and treatment of thyroid cancer. The search terms were “thyroid cancer” or “thyroid carcinoma,” “quality of life” or “health related quality of life,” and “questionnaire” or “patient reported outcome.” EMBASE, PubMed, Medline, PsycINFO, CINAHL, and HaNDLE-On-QOL search engines were searched between 2 February and 23 February 2020. A total of 811 identified articles were reduced to 314 when duplicates were removed. After exclusion criteria (not thyroid specific, no quality of life questionnaires, and conference abstracts) were applied, 92 remained. Hand searching identified a further 2 articles. Of the 94 included, 16 had a surgical, 26 a primarily medical, and 52 a general focus. There were articles from 27 countries. A total of 49 articles were published from 2015 through 2019 inclusive. A total of 72 questionnaires were used among the articles and a range of 7 to 2215 participants were included within each article. This review demonstrated an increasing number of publications annually. The scope of enquiry into aspects of HRQOL following thyroid cancer is broad, with relatively few addressing surgical aspects and many focusing on the impact of radio-iodine. More research is required into shared decision-making in initial management decisions and HRQOL and interventions aimed specifically at addressing long-term HRQOL difficulties.


2021 ◽  
Vol 264 ◽  
pp. 394-401
Author(s):  
Mary Kate Luddy ◽  
Rachel Vetter ◽  
Jessica Shank ◽  
Whitney Goldner ◽  
Anery Patel ◽  
...  

2015 ◽  
Vol 54 (1) ◽  
pp. 9-17 ◽  
Author(s):  
Kelly G. Gwathmey ◽  
Mark R. Conaway ◽  
Reza Sadjadi ◽  
Amruta Joshi ◽  
Carolina Barnett ◽  
...  

2021 ◽  
Author(s):  
Claire E. E. de Vries ◽  
Dennis J. S. Makarawung ◽  
Valerie M. Monpellier ◽  
Ignace M. C. Janssen ◽  
Steve M. M. de Castro ◽  
...  

Abstract Purpose The RAND-36 is the most frequently used patient-reported outcome measure (PROM) to evaluate health-related quality of life (HRQoL) in bariatric surgery. However, the RAND-36 has never been adequately validated in bariatric surgery. The purpose of this study was to validate the RAND-36 in Dutch patients undergoing bariatric surgery. Material and Methods To validate the RAND-36, the following measurement properties were assessed in bariatric surgery patients: validity (the degree to which the RAND-36 measures what it purports to measure (HRQoL)), reliability (the extent to which the scores of the RAND-36 are the same for repeated measurement for patients who have not changed in HRQoL), responsiveness (the ability of the RAND-36 to detect changes in HRQoL over time). Results Two thousand one hundred thirty-seven patients were included. Validity was not adequate due to the irrelevance of some items and response options, the lack of items relevant to patients undergoing bariatric surgery, and the RAND-36 did not actually measure what it was intended to measure in this study (HRQoL in bariatric surgery patients). Reliability was insufficient for the majority of the scales (the scores of patients who had not changed in HRQoL were different when the RAND was completed a second time (intraclass correlation coefficient (ICC) values 0.10–0.69)). Responsiveness was insufficient. Conclusion The RAND-36 was not supported by sufficient validation evidence in patients undergoing bariatric surgery, which means that the RAND-36 does not adequately measure HRQoL in this patient population. Future research studies should use PROMs that are specifically designed for assessing HRQoL in patients undergoing bariatric surgery. Graphical abstract


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