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The Desmoid Tumor Research Foundation

July 2018

Identification and assessment of health-related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study

Author Information

Timbergen MJM(1)(2), van de Poll-Franse LV(3)(4)(5), Grunhagen DJ(1), van der Graaf WT(6)(7), Sleijfer S(2), Verhoef C(1), Husson O(7).

(1)Dept of Surgical Oncology, Erasmus MC Cancer Institute Rotterdam, Rotterdam, NL. (2)Dept of Medical Oncology, Erasmus MC Cancer Institute Rotterdam, Rotterdam,NL. (3)Dept of Research, Netherlands Comprehensive Cancer Organisation (IKNL), Eindhoven, NL. (4)Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, NL. (5)Dept of Medical and Clinical Psychology, Tilburg University, Tilburg, NL. (6)Dept of Medical Oncology, Radboud University Medical Center, Nijmegen NL. (7)Division of Clinical Studies, Institute of Cancer Research and Royal Marsden NHS Foundation Trust, London, UK.

Publication

Qual Life Res

Summary

This study aims to review currently used health-related quality of life (HRQL) measures and to asses HRQL issues among DTF patients. The search strategy identified thirteen articles reporting HRQL measures using a wide variety of cancer-specific HRQL tools, functional scores, symptom scales (e.g. NRS), and single-item outcomes (e.g. pain and functional impairment). No DTF-specific HRQL tool was found. Qualitative analysis of three focus groups (6 males, 9 females) showed that participants emphasised the negative impact of DTF and/or its treatment on several HRQL domains. Six themes were identified: (1) diagnosis, (2) treatment, (3) follow-up and recurrence, (4) physical domain, (5) psychological and emotional domain, and (6) social domain. Our study indicates that HRQL of DTF patients was negatively affected in several domains. A DTF-specific HRQL measure could improve our understanding of short- and long-term effects and, ideally, can be used in both clinic and for research purposes.

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