A mixed methods approach to adapting health-related quality of life measures for use in routine oncology clinical practice
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The current study reviewed and adapted existing health-related quality of life (HRQoL) instruments for use in routine clinical practice delivering outpatient chemotherapy for colorectal, breast and gynaecological cancers.
564 (288 gynaecological, 208 breast and 68 colorectal) outpatient consultations of 141 patients were audio-recorded and analysed to identify discussed issues. Issues were ranked from most to least commonly discussed within each disease group. Existing HRQoL instruments were evaluated against these lists and best fitting items entered into cancer-specific item banks. Item banks were evaluated during semi-structured interviews by twenty-one oncologists (13 consultants and 8 specialist registrars), four clinical nurse specialists and thirty patients, from breast, gynaecological and colorectal cancer practices. Pilot questionnaires were completed by 448 (145 breast, 148 gynaecological and 155 colorectal) patients attending outpatient clinics. Item selection and scale reliability was explored using descriptive data and psychometric methods alongside qualitative patient and clinician ratings.
Each questionnaire includes five physical and three psychosocial function scales each with good internal consistency reliability (α > 0.70) plus disease-specific individual-symptom items identified as useful in clinical practice.
Three cancer-specific health-related quality of life measures were developed for use in routine clinical practice. Initial analyses suggest good clinical utility and acceptable psychometric properties for the new instruments.
KeywordsPatient-reported outcomes Clinical practice Cancer Questionnaire design
Activities of daily living
Eastern Cooperative Oncology Group
European Organisation for Research and Treatment of Cancer
Functional Assessment of Chronic Illness Therapy
Functional Assessment of Cancer Therapy-Colorectal
Functional Assessment of Cancer Therapy-General
Drug treatment for bowel cancer trial
Hospital Anxiety and Depression Scale
Health-related quality of life
Mental Health Inventory (5 item)
Principle axis factoring
Patient-reported outcome measures
Patient-reported outcomes and quality of life instruments database
Breast cancer module (23 item)
Quality of life questionnaire-core (30 item)
Colorectal cancer module (29 item)
Colorectal cancer module (38 item)
Lung cancer module (13 item)
Colorectal liver metastases module (21 item)
Ovarian cancer module (28 item)
Quality of life, enhanced staff training (research programme)
QuEST Breast Cancer Questionnaire
QuEST Colorectal Cancer Questionnaire
QuEST Gynaecological Cancer Questionnaire
Rotterdam Symptom Checklist
This work was supported by funding from Cancer Research, UK, and Bramall Fellowship research grants. We thank Lyndsay Campbell and Sookhoe Eng from the University of Leeds for their assistance in data collection during this project. We also thank the patients and clinicians who have taken part in the research and those who have provided advice and comments throughout. We acknowledge the EORTC and authors of the MHI-5 and the Rotterdam Symptom Checklist for use of their instruments in this study. We would like to thank the reviewers of this manuscript for their comments and expert advice.
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