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Abstract：
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: A DTF-specific HRQL tool and consensus regarding the preferred measurement tool among DTF patients is lacking. 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: A DTF-specific HRQL tool and consensus regarding the preferred measurement tool among DTF patients is lacking. 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.
摘要：
目的：散发性纤维瘤病（DTF）是一种罕见的，慢性，非转移性，软组织疾病。它的特征是局部侵入性和不可预测的生长行为以及手术后局部复发的高倾向，因此通常对健康相关的生活质量（HRQL）有很大影响。本研究旨在回顾目前使用的HRQL措施，并评估DTF患者的HRQL问题。
方法：使用了混合方法方法，包括（1）系统文献综述，根据PRISMA指南(2009)，使用与常用数据库中的零星DTF和HRQL相关的搜索词(例如Embase，MedlineOvid,WebofScience,CochraneCentral,Psync信息,和谷歌学者)，提供以前用于评估DTF患者HRQL的措施的概述;(2)了解DTF患者经历的HRQL问题的焦点小组.
结果：搜索策略确定了13篇报告使用多种癌症特异性HRQL工具进行HRQL测量的文章，功能分数，症状量表（例如NRS），和单项目结果(如疼痛和功能障碍)。没有发现DTF特异性HRQL工具。三个焦点组的定性分析(6名男性，9名女性）表明参与者强调了DTF和/或其治疗对几个HRQL域的负面影响。确定了六个主题：（1）诊断，(2)治疗,(3)随访和复发,（4）物理域，（5）心理和情感领域，(6)社会领域。
结论：在DTF患者中缺乏DTF特异性HRQL工具和关于首选测量工具的共识。我们的研究表明，DTF患者的HRQL在多个领域受到负面影响。针对DTF的HRQL测量可以提高我们对短期和长期影响的理解，理想情况下,可用于临床和研究目的。
方法：使用了混合方法方法，包括（1）系统文献综述，根据PRISMA指南(2009)，使用与常用数据库中的零星DTF和HRQL相关的搜索词(例如Embase，MedlineOvid,WebofScience,CochraneCentral,Psync信息,和谷歌学者)，提供以前用于评估DTF患者HRQL的措施的概述;(2)了解DTF患者经历的HRQL问题的焦点小组.
结果：搜索策略确定了13篇报告使用多种癌症特异性HRQL工具进行HRQL测量的文章，功能分数，症状量表（例如NRS），和单项目结果(如疼痛和功能障碍)。没有发现DTF特异性HRQL工具。三个焦点组的定性分析(6名男性，9名女性）表明参与者强调了DTF和/或其治疗对几个HRQL域的负面影响。确定了六个主题：（1）诊断，(2)治疗,(3)随访和复发,（4）物理域，（5）心理和情感领域，(6)社会领域。
结论：在DTF患者中缺乏DTF特异性HRQL工具和关于首选测量工具的共识。我们的研究表明，DTF患者的HRQL在多个领域受到负面影响。针对DTF的HRQL测量可以提高我们对短期和长期影响的理解，理想情况下,可用于临床和研究目的。
