scholarly journals Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure

2018 ◽  
Vol Volume 9 ◽  
pp. 17-34 ◽  
Author(s):  
Joanna C Robson ◽  
Jill Dawson ◽  
Peter F Cronholm ◽  
Nataliya Milman ◽  
Katherine Kellom ◽  
...  
Keyword(s):  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Specific Patient ◽  
Patient Reported Outcome Measure ◽  
Anca Associated Vasculitis ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

scholarly journals Is the RAND-36 an Adequate Patient-reported Outcome Measure to Assess Health-related Quality of Life in Patients Undergoing Bariatric Surgery?

2021 ◽  
Author(s):  
Claire E. E. de Vries ◽  
Dennis J. S. Makarawung ◽  
Valerie M. Monpellier ◽  
Ignace M. C. Janssen ◽  
Steve M. M. de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bariatric Surgery ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

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

scholarly journals Patient perceptions of health-related quality of life in giant cell arteritis; international development of a disease-specific Patient-Reported Outcome Measure

Rheumatology ◽  
2021 ◽  
Author(s):  
Joanna C Robson ◽  
Celia Almeida ◽  
Jill Dawson ◽  
Alison Bromhead ◽  
Emma Dures ◽  
...  
Keyword(s):  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Specific Patient ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Uk ◽  
Disease Specific

Abstract Objectives Giant cell arteritis is a large vessel vasculitis presenting with headache, jaw claudication, musculoskeletal and visual involvement. Current treatment is glucocorticoids and anti-IL6 Tocilizumab in refractory disease. The objective of this study was to explore the impact of GCA and its treatment on peoples’ health related quality of life (HRQoL), to inform the development of a disease-specific patient reported outcome measure (PROM) for use in clinical trials and practice. Methods Participants from the UK and Australia, with biopsy- or imaging-confirmed GCA, were interviewed to identify salient aspects of HRQoL in relation to GCA and its treatment. Purposive sampling included a range of demographic and disease features (cranial, large vessel vasculitis (LVV)-GCA and visual involvement). Inductive analysis identified individual themes of importance, then domains. Candidate questionnaire items were developed from the individual themes, refined by piloting, cognitive interviews and a linguistic translatability assessment. Results Thirty six interviews were conducted to saturation with participants with GCA from the UK (25) and Australia (11). Mean age 74 years, 23 (63.9%) female, 13 (36.1%) visual loss and 5 (13.9%) LVV-GCA. Thirty-nine individual themes within five domains identified: Physical Symptoms, Activity of Daily Living (ADLs) and Function, Participation, Psychological Impact and Impact on Sense of Self and Perception of Health. Sixty-nine candidate items developed from individual themes; piloting and refinement resulted in a 40-item draft questionnaire. Conclusion This international qualitative study underpins the development of candidate items for a disease specific PROM for GCA. The draft questionnaire is now ready for psychometric testing.

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