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

Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation
Milea J M TimbergenOlga Husson

Abstract

Sporadic desmoid-type fibromatosis (DTF) is a rare, chronic, non-metastasising, disease of the soft tissues. It is characterised by local invasive and unpredictable growth behaviour and a high propensity of local recurrence after surgery thereby often having a great impact on health-related quality of life (HRQL). This study aims to review currently used HRQL measures and to asses HRQL issues among DTF patients. A mixed methods methodology was used consisting of (1) a systematic literature review, according to the PRISMA guidelines (2009), using search terms related to sporadic DTF and HRQL in commonly used databases (e.g. Embase, Medline Ovid, Web of science, Cochrane Central, Psyc Info, and Google scholar), to provide an overview of measures previously used to evaluate HRQL among DTF patients; (2) focus groups to gain insight into HRQL issues experienced by 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 ...Continue Reading

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Citations

Sep 19, 2019·Annals of Surgical Oncology·Winan J van HoudtWinette T A van der Graaf
Aug 21, 2019·Clinical Orthopaedics and Related Research·Erik T NewmanSantiago Lozano Calderon
Aug 6, 2020·Cancers·Andrea NapolitanoBruno Vincenzi
Jul 15, 2020·Cancers·Dorian Yarih Garcia-OrtegaJorge Luis Martínez-Tlahuel
May 12, 2021·Current Opinion in Oncology·Nicolas PenelWinette T A van Der Graaf

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Methods Mentioned

BETA
amputation

Software Mentioned

ATLAS
ti
Medline Ovid
TESS

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