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Title: The development and validation of a patient-reported outcome measure of health-related quality of life in locally recurrent rectal cancer
Author: Harji, Deena Pravin
ISNI:       0000 0004 6423 5976
Awarding Body: University of Leeds
Current Institution: University of Leeds
Date of Award: 2017
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Background The impact of locally recurrent rectal cancer (LRRC) on health-related quality of life (HrQoL) is poorly understood. The overall aim of the project was to develop and validate a patient reported outcome measure (PROM) to assess HrQoL in LRRC in patients in the UK and Australia. This thesis reports on the initial development of the LRRC-QoL and the results from the interim psychometric analysis from the UK cohort. Methods An international, three phase, mixed methodological study was conducted. Phase I consisted of two systematic reviews and a qualitative study consisting of a series of focus groups. Phase II consisted of the development and pre-testing of the provisional PROM; The Locally Recurrent Rectal Cancer Quality of Life Measure (The LRRC-QoL). Phase III assessed the psychometric properties of the LRRC-QoL including scale structure, reliability and validity. Results Phase I: Relevant HrQoL themes were identified; symptoms, sexual function, psychological impact, role functioning, healthcare services, future perspective. These themes were operationalised into a conceptual framework and reviewed by an expert panel prior to the development of a provisional version of the LRRC-QoL. Phase II: A total of 27 cognitive interviews were undertaken to pre-test the LRRC-QoL. The measure underwent three revisions in both population cohorts. The final version of the LRRC-QoL ready for psychometric testing consisted of 32 questions organised into 5 scales. Phase III: Eighty patients participated in the UK validation study. The final scale structure consisted of healthcare services, psychological impact, sexual function, pain, urostomy-related symptoms, lower limb symptoms, stoma related issues, sexual interest and urinary symptoms. The reliability of the LRRC-QoL was good, with Cronbach’s Alpha and Intraclass correlation values of >0.7 for the majority of the scales. The LRRC-QoL was unable to demonstrate the properties of convergent validity and known-groups comparison sufficiently. Conclusions The LRRC-QoL is the first measure to be developed exclusively in patients with LRRC. The scale structure of the LRRC-QoL is robust. Further work is required including the completion of the psychometric validation in Australia and the confirmation of reliability and validity in an independent sample.
Supervisor: Brown, Julia ; Velikova, Galina ; Sagar, Peter Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available