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 and Galina Velikova

Ada Keding

BackgroundBenefits of routine HRQOL

assessment:◦Improved communication◦Increased awareness of patient concerns◦Improved patient well-being

However, not routinely implemented in oncology clinical practice

Possible barriers :◦Lack of disease and treatment specificity◦Research vs Clinical target

AimsTo adapt HRQOL measures

specifically for use in chemotherapy clinical practice◦Breast Cancer◦Gynaecological Cancer◦Colorectal Cancer

Use of qualitative and quantitative methods

Stages of DevelopmentStage 1Problem

Statement

Stage 2Issue

Generation

Stage 3Operation-alisation

Stage 4Pre-

TestingStage 5

Field Testing

Analysis of Audio

Recordings

Matched Literature

Review

Semi structured Interviews

Pilot

Item Selection &

Scale Developme

nt

Stage 2: Content Analysis

Stage 3: OperationalisationMost issues covered by

◦ EORTC QLQ generic and disease specific module items

Issues relating to stoma not routinely discussed, covered by◦ EORTC QLQ colorectal

modules◦ FACT-C

Commonly discussed items missing◦ Sore Mouth◦ Infection◦ Weight◦ Neuropathy◦ Sore Eyes◦ Dizziness

Covered by◦ EORTC Item Bank◦ Rotterdam Symptom

Checklist

Stage 4: Pre-Testing by InterviewsAppropriateness

◦Understandable and not found upsetting◦Sexual questions made optional

Item refinement◦Removal of duplicates and non-useful items◦Additional items covering Emotional

DistressIssues in clinical practice

◦Need for guidelines◦Clear referral pathways

Stage 5: Pilot PopulationBreast Gynaecologic

alColorectal

Mean Age 51 SD=12

64 SD=11

63 SD=11

Gender

Male 0 0% 0 0% 97 63%Female 148 100% 145 100% 58 37%

Stage of Disease

Stage I 18 12% 14 10% 2 1%Stage II 70 48% 7 5% 9 6%Stage III 20 14% 77 52% 34 22%Stage IV 37 26% 50 34% 110 71%

Stage 5: Factor Analysis

CommonPrincipal Factors

α =.81-.93

Strenuous

Activities

4 items Everyday Tasks5 items

Pain2 items

Fatigue5 items

Impact on

Activities

4 items

Emotional

Distress5 items

Body Image3 items

Sexual Functi

on6

items

Stoma4

items

16-22 single items

Stage 5: Item Reduction

Emotional DistressSleep NervousTense Down in

dumpsWorry CalmIrritable DownheartedDepressed HappyMood LonelyStressed EnjoymentMemory Tearful

Disease Specific

ity

Clinical Utility

Patient Rating

Doctor Rating Validate

d Scales

Score Spread

α / best α

Factor Co-

Loading

Factor Loading

Prevalence

Stage 5: Known Groups

Local Disease Metastatic1

2

3

4Disease Stage

1234HADS-Total

0-64Good Functioning

87-108Poor Functioning

1

2

3

4FACT-G Total

Strenuous ActivitesEveryday TasksPainFatigueImpact on ActivitiesEmotional DistressBody Image

Conclusions and Next StepsValue of mixed

methods◦ Identified gaps◦ Facilitated decision

making during item selection

◦ Provided insights into clinical practice and barriers to uptake of HRQOL measures

Study under way: Doctor Training pilot

Any questions?

We would like to thank all patients and clinical staff who have been giving their time to take part in our research.