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Quality of Life Research

, Volume 21, Issue 3, pp 389–403 | Cite as

A mixed methods approach to adapting health-related quality of life measures for use in routine oncology clinical practice

  • Clare Harley
  • Elena Takeuchi
  • Sally Taylor
  • Ada Keding
  • Kate Absolom
  • Julia Brown
  • Galina Velikova
Article

Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

Keywords

Patient-reported outcomes Clinical practice Cancer Questionnaire design 

Abbreviations

ADL

Activities of daily living

ECOG

Eastern Cooperative Oncology Group

EORTC

European Organisation for Research and Treatment of Cancer

FACIT

Functional Assessment of Chronic Illness Therapy

FACT-C

Functional Assessment of Cancer Therapy-Colorectal

FACT-G

Functional Assessment of Cancer Therapy-General

FOCUS2

Drug treatment for bowel cancer trial

HADS

Hospital Anxiety and Depression Scale

HRQoL

Health-related quality of life

MHI-5

Mental Health Inventory (5 item)

PAF

Principle axis factoring

PROMs

Patient-reported outcome measures

PROQOLID

Patient-reported outcomes and quality of life instruments database

QLQ-BR23

Breast cancer module (23 item)

QLQ-C30

Quality of life questionnaire-core (30 item)

QLQ-CR29

Colorectal cancer module (29 item)

QLQ-CR38

Colorectal cancer module (38 item)

QLQ-LC13

Lung cancer module (13 item)

QLQ-LMC21

Colorectal liver metastases module (21 item)

QLQ-OV28

Ovarian cancer module (28 item)

QuEST

Quality of life, enhanced staff training (research programme)

QuEST-Br

QuEST Breast Cancer Questionnaire

QuEST-Cr

QuEST Colorectal Cancer Questionnaire

QuEST-Gy

QuEST Gynaecological Cancer Questionnaire

RSCL

Rotterdam Symptom Checklist

Notes

Acknowledgments

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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Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Clare Harley
    • 1
  • Elena Takeuchi
    • 1
  • Sally Taylor
    • 1
  • Ada Keding
    • 1
  • Kate Absolom
    • 1
  • Julia Brown
    • 2
  • Galina Velikova
    • 1
  1. 1.Section of Oncology and Clinical Research, St James Institute of OncologyUniversity of LeedsLeedsUK
  2. 2.Clinical Trials Research UnitUniversity of LeedsLeedsUK

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