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胸段和乳腺肉瘤患者所经历的与健康相关的生活质量问题:一个罕见且研究不足的群体。

Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group.

作者信息

van Eck Ilse, den Hollander Dide, Lidington Emma, Hentschel Leopold, Eichler Martin, Salah Samer, Singer Susanne, Pinto Monica, Fauske Lena, Fiore Marco, Nixon Ioanna, Constantinidou Anastasia, Desar Ingrid M E, Bonenkamp Johannes J, van Houdt Winan J, Reuvers Milou J P, Haas Rick L M, Bruland Øyvind S, Kasper Bernd, van der Graaf Winette T A, Husson Olga

机构信息

Department of Medical Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek, 1066 CX Amsterdam, The Netherlands.

Department of Medical Oncology, Radboud University Medical Center, 6525 GA Nijmegen, The Netherlands.

出版信息

J Clin Med. 2021 Nov 16;10(22):5334. doi: 10.3390/jcm10225334.

Abstract

Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm height were specific physical issues for breast sarcoma patients, whereas respiratory problems were only mentioned by thoracic sarcoma patients. Body image issues, changes in mood, fear of recurrence, and living with uncertainty were important mental health issues for both subgroups. Social issues in both groups included challenges in work and relationships, financial difficulties, loss of independence, and limitations in social activities. The identified physical, mental, and social health challenges can significantly impact thoracic and breast sarcoma patients' HRQoL. Results of this qualitative study will guide personalised supportive care for breast and thoracic sarcoma patients and help in determining the best possible HRQoL measurement strategy for sarcoma patients with different primary sarcoma locations.

摘要

胸段和乳腺肉瘤是肉瘤群体中一个罕见的亚组。关于它们与健康相关的生活质量(HRQoL)的了解有限,且缺乏有效的针对该疾病的HRQoL评估工具。这项定性研究旨在调查一小部分胸段和乳腺肉瘤患者所经历的HRQoL问题。对19名胸段肉瘤患者和4名乳腺肉瘤患者进行了半结构化访谈,并进行了主题分析。两组患者提到的身体问题包括疲劳、睡眠障碍、疼痛、伤口感染以及与化疗和放疗相关的症状。背部紧绷和进行高于手臂高度的任务受限是乳腺肉瘤患者特有的身体问题,而呼吸问题仅由胸段肉瘤患者提及。身体形象问题、情绪变化、对复发的恐惧以及生活在不确定性中是两个亚组重要的心理健康问题。两组的社会问题包括工作和人际关系方面的挑战、经济困难、失去独立性以及社交活动受限。所确定的身体、心理和社会健康挑战会对胸段和乳腺肉瘤患者的HRQoL产生重大影响。这项定性研究的结果将指导对乳腺和胸段肉瘤患者的个性化支持性护理,并有助于确定针对不同原发肉瘤部位的肉瘤患者的最佳HRQoL测量策略。

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