Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibromatosis.

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Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibr.pdf (284.52 KB)

Embargo End Date

ICR Authors

Jones, Robin
 Husson, Olga

Authors

Schut, A-RW
Lidington, E
Timbergen, MJM
Younger, E
van der Graaf, WTA
van Houdt, WJ
Bonenkamp, JJ
Jones, RL
Grünhagen, DJ
Sleijfer, S
Verhoef, C
Gennatas, S
Husson, O

Document Type

Journal Article

Date

2022-01-29

Date Accepted

2022-01-26

Abstract

Sporadic desmoid-type fibromatosis (DTF) is a rare, non-metastasising soft-tissue tumour. Patients can experience a variety of disease-specific issues related to the unpredictable clinical course and aggressiveness of DTF, which negatively impacts health-related quality of life (HRQoL). These DTF-specific issues are not captured by generic HRQoL tools. A 102-item provisional DTF-specific HRQoL tool, the DTF-QoL, was previously developed. The aim of this study was to pre-test the psychometric properties of the DTF-QoL by administering it together with the EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) to 236 DTF patients from the United Kingdom and the Netherlands. Construct validity and reliability were determined based on factor analysis, multi-trait scaling analysis, Cronbach's alpha, and correlations with the EORTC QLQ-C30 scales. Ninety-six items were selected, conceptualised into three symptom scales, eleven disease-impact scales and six single items, together forming the final DTF-QoL. Scaling assumptions were fully or moderately met for ten out of fourteen scales. Cronbach's alpha ranged from 0.551-0.908. Most scales of the DTF-QoL were weakly or moderately correlated with the EORTC QLQ-C30. The DTF-QoL is a promising tool capturing the whole spectrum of DTF-specific issues. Implementation of the DTF-QoL in research and clinical practice will help to personalise HRQoL measurement and clinical care for DTF patients.

Citation

Cancers, 2022, 14 (3)

DOI

10.3390/cancers14030709
10.3390/cancers14030709

URI

https://repository.icr.ac.uk/handle/internal/5095

Rights

http://creativecommons.org/licenses/by/4.0/

Source Title

Publisher

MDPI

ISSN

2072-6694

eISSN

2072-6694
2072-6694

Collections

Clinical Studies

Research Team

Clinical and Translational Sarcoma
Sarcoma Clinical Trials (R Jones)

Notes