ePS5.07 The Q-Life app: an innovative patient-reported-outcome measure to assess individual quality of life based on a 360 degrees evaluation

2020 ◽  
Vol 19 ◽  
pp. S51
Author(s):  
D. Muilwijk ◽  
D.C. van der Heijden ◽  
V.A.M. Gulmans ◽  
C.K. van der Ent
Keyword(s):  
Quality Of Life ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Individual Quality ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Individual Quality Of Life

Evaluation of Ankylosing Spondylitis Quality of Life (EASi-QoL): Reliability and Validity of a New Patient-reported Outcome Measure

2010 ◽  
Vol 37 (10) ◽  
pp. 2100-2109 ◽  
Author(s):  
KIRSTIE L. HAYWOOD ◽  
ANDREW M. GARRATT ◽  
KELVIN P. JORDAN ◽  
EMMA L. HEALEY ◽  
JONATHAN C. PACKHAM
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Postal Survey ◽  
Patient Reported Outcome Measure ◽  
Patient Interviews ◽  
Patient Reported ◽  
Test Retest Reliability

Objective.There is currently no universally accepted measure of quality of life in ankylosing spondylitis (AS). Our objective was to develop and evaluate a patient-reported outcome measure of quality of life in AS, EASi-QoL.Methods.We used patient interviews, a literature review, and completion of an individualized measure of AS quality of life during clinic-based and pilot surveys to derive questionnaire content. Classical and modern psychometrics were then used to evaluate the questionnaire using data from a large UK-based postal survey of 1000 patients with AS.Results.Data analysis from the interviews and clinic-based and postal surveys produced a 57-item self-completed questionnaire. Fifteen items were removed as a result of patient interviews and the pilot survey. In total, 612 (64.0%) patients responded to the main postal survey. After assessment of data quality, confirmatory factor analysis, and Rasch analysis, 20 items were found to contribute to 4 domains of AS-related quality of life: physical function, disease activity, emotional well-being, and social participation. Item-total correlations ranged from 0.66 to 0.84. Cronbach’s alpha and test-retest reliability estimates were 0.88–0.92 and 0.88–0.93, respectively. Confirmed hypothesized correlations with the AS Quality of Life questionnaire, the Bath AS Disease Activity Index, Bath AS Functional Index, SF-36, EQ-5D, and the Hospital Anxiety and Depression Scale were evidence for the construct validity of the EASi-QoL.Conclusion.The EASi-QoL has good evidence of data quality, internal reliability, test-retest reliability, and content and construct validity, and should be considered for use with patients in routine practice settings and in evaluative studies including clinical trials. Measurement responsiveness and minimal important change are currently being assessed.

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 Correction: The watery eye quality of life (WEQOL) questionnaire: a patient-reported outcome measure for surgically amenable epiphora

Eye ◽  
2021 ◽  
Author(s):  
Christopher B. Schulz ◽  
Paul Rainsbury ◽  
Jeremy J. Hoffman ◽  
Laura Ah-Kye ◽  
Elizabeth Yang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

scholarly journals Development and initial psychometric validation of a patient-reported outcome measure for Crohn’s perianal fistula: the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale

Gut ◽  
2020 ◽  
pp. gutjnl-2019-320553
Author(s):  
Samuel O Adegbola ◽  
Lesley Dibley ◽  
Kapil Sahnan ◽  
Tiffany Wade ◽  
Azmina Verjee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Construct Validity ◽  
Anal Fistula ◽  
Outcome Measure ◽  
Perianal Fistula ◽  
Patient Reported Outcome ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
The Uk

IntroductionCrohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype.MethodsA draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn’s perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test–retest analysis.ResultsData from 211 patients contributed to development of a final 28-item questionnaire. The Crohn’s Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach’s alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS.ConclusionThe CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient.

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