Schut Anne-Rose W, Lidington Emma, Timbergen Milea J M, Younger Eugenie, van der Graaf Winette T A, van Houdt Winan J, Bonenkamp Johannes J, Jones Robin L, Grünhagen Dirk J, Sleijfer Stefan, Verhoef Cornelis, Gennatas Spyridon, Husson Olga
Department of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.
Department of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.
Cancers (Basel). 2022 Jan 29;14(3):709. doi: 10.3390/cancers14030709.
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.
散发性韧带样型纤维瘤病（DTF）是一种罕见的、不发生转移的软组织肿瘤。患者可能会经历各种与DTF不可预测的临床病程和侵袭性相关的特定疾病问题，这对健康相关生活质量（HRQoL）产生负面影响。这些DTF特定问题未被通用的HRQoL工具所涵盖。之前开发了一种包含102个条目的临时性DTF特异性HRQoL工具，即DTF-QoL。本研究的目的是通过将DTF-QoL与欧洲癌症研究与治疗组织生活质量问卷核心30项（EORTC QLQ-C30）一起施用于来自英国和荷兰的236名DTF患者，对DTF-QoL的心理测量特性进行预测试。基于因子分析、多特质量表分析、克朗巴哈系数以及与EORTC QLQ-C30量表的相关性来确定结构效度和信度。选择了96个条目，将其概念化为三个症状量表、11个疾病影响量表和6个单项，共同构成最终的DTF-QoL。14个量表中有10个量表的量表假设得到了完全或适度满足。克朗巴哈系数范围为0.551 - 0.908。DTF-QoL的大多数量表与EORTC QLQ-C30呈弱或中度相关。DTF-QoL是一个很有前景的工具，能够涵盖DTF特定问题的全谱。在研究和临床实践中实施DTF-QoL将有助于为DTF患者进行HRQoL测量和临床护理的个性化。
