scholarly journals Psychometric Validation of the CLEFT-Q Patient Reported Outcome Measure: A Prospective Study to Examine Cross-Sectional Construct Validity

2021 ◽  
pp. 105566562110628
Author(s):  
Anna Miroshnychenko ◽  
Charlene Rae ◽  
Karen Wong Riff ◽  
Christopher Forrest ◽  
Tim Goodacre ◽  
...  
Keyword(s):  
Construct Validity ◽  
Cleft Lip ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Cross Sectional ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
A Prospective Study

Objective CLEFT-Q is a condition-specific patient-reported outcome measure (PROM) for patients with cleft lip and/or palate (CL/P). The aim of this study was to examine the cross-sectional construct validity of the CLEFT-Q scales. Design Construct validity was assessed through a prospective study that tested hypotheses regarding correlations of scores with other PROMs that measure related constructs. Setting Seven cleft centres in Canada, the USA, and UK were involved. Patients/Participants Patients were aged eight to 29 years with CL/P. Interventions Before undergoing rhinoplasty, orthognathic, cleft lip scar revision, and alveolar bone graft, participants were asked to complete the following PROMs: CLEFT-Q (9 scales), Child Oral Health Impact Profile (socio-emotional subscale) and Cleft Hearing Appearance and Speech Questionnaire (features 1 subscale). Main Outcome Measure(s) The correlation coefficients examining the relationship between the scales were the main outcome measures. Correlations (Spearman) were calculated and interpreted as follows: <0.3 weak, 0.30 to 0.50 moderate, ≥0.50 strong. Results Participants ( n = 177) were mostly male (61%) and aged between eight and 11 years (42%). Overall, 38 of 52 (73%) hypotheses tested were supported. More specifically, 20 of 26 (77%) hypotheses about correlations between the appearance scales were supported, two of three (67%) hypotheses about correlations between the health-related quality of life scales were supported, and 16 of 23 (70%) hypotheses about correlations between the appearance and health-related quality of life scales were supported. Conclusions Cross-sectional construct validity of the CLEFT-Q scales adds further evidence of the psychometric properties of this instrument.

What Matters to Patients With Cleft Lip and/or Palate

2017 ◽  
Vol 55 (3) ◽  
pp. 442-450 ◽  
Author(s):  
Karen W. Y. Wong Riff ◽  
Elena Tsangaris ◽  
Timothy E. E. Goodacre ◽  
Christopher R. Forrest ◽  
Jessica Lawson ◽  
...  
Keyword(s):  
Conceptual Framework ◽  
Qualitative Methodology ◽  
Cleft Lip ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Changes Over Time ◽  
What Matters

Objective: The goal of treatment for individuals with cleft lip and/or palate (CL/P) is to improve physical, psychological, and social health. Outcomes of treatment are rarely measured from the patient’s perspective. The aim of the study was to develop a conceptual framework for a patient-reported outcome (PRO) instrument for individuals with clefts (CLEFT-Q) by developing an in-depth understanding of issues that individuals consider to be important. Design: The qualitative methodology of interpretive description was used. Setting, Participants, and Intervention: We performed 136 individual in-depth interviews with participants with clefts of any age, presenting for cleft care, across 6 countries. Parents were involved if the child was more comfortable. Interviews were audio-recorded, transcribed verbatim, and coded using constant comparison. The data were used to develop a refined conceptual framework. Results: Participants described concepts of interest in 3 top-level domains, each of which included subdomains: appearance (face, nose, nostrils, teeth, lips, jaw, cleft lip scar), health-related quality of life (psychological, social, school, speech-related distress), and facial function (speech, eating/drinking). Participants were able to describe changes over time with regard to the 3 domains. Conclusions: A conceptual framework of concepts of interest to individuals with CL/P formed the basis of the scales in the CLEFT-Q. Each subdomain represents an independently functioning scale. Understanding what matters to patients is essential in guiding PRO measurement.

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

Sign in / Sign up

Export Citation Format

Share Document