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The Desmoid Tumor Research Foundation

January 2022

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

Author Information

Schut AW (1, 2), Lidington E (3), Timbergen MJM (1, 2), Younger E (3), van der Graaf WTA (1, 4), van Houdt WJ (5), Bonenkamp JJ (6), Jones RL (3, 7), Grünhagen DJ (2), Sleijfer S (1), Verhoef C (2), Gennatas S (3, 8), Husson O (2, 4, 7)

(1) Dept of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands. (2) Dept of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands. (3) Sarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK. (4) Deptt of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands. (5) Dept of Surgical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands. (6) Dept of Surgical Oncology, Radboud Univ Medical Center, 6525 GA Nijmegen, The Netherlands. (7) Division of Clinical Studies, Institute of Cancer Research, Royal Marsden NHS Foundation Trust, London SM2 5NG, UK. (8) Dept of Medical Oncology, Guy's and St Thomas' NHS Foundation Trust, London SE1 9RT, UK.

Publication

Cancers (Basel)

Summary

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.

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