School of Nursing, Midwifery and Paramedicine, Curtin University, Perth, Western Australia, Australia.
WA Centre for Cancer Prevention (WACPRU), School of Psychology, Curtin University, Perth, Western Australia, Australia.
Psychooncology. 2020 Jul;29(7):1209-1216. doi: 10.1002/pon.5411. Epub 2020 Jun 16.
Sarcoma is a rare cancer that imposes a significant burden on the lives of patients. Many survivors have long-term disability as a result of treatment and the disease. Patients often experience functional issues, poorer mental health, reduced quality of life, and interpersonal issues. There is a need to explore the unmet needs of sarcoma patients as it is unclear how these issues are being addressed. The aim of this study was to explore the unmet needs of patients who have been diagnosed with sarcoma.
The participants were individuals previously diagnosed with a sarcoma (n = 22). Participants completed a semi-structured interview about their unmet needs relating to sarcoma. The transcripts were analyzed using thematic analysis.
Five overarching themes were identified: daily living, financial needs, lack of information, need for a community, and navigating the healthcare system. Participants reported a range of practical needs, including transport, limited understanding of their treatments, and financial issues. Participants also described a need to connect with people who had gone through similar experiences.
Sarcoma patients have fundamental needs that affect their capacity to live their life in the best possible way. Health services need to better facilitate sarcoma patients at each stage of their experience by providing individualized referrals, support, and coordination. Support interventions are needed to help patients adjust to sarcoma and to improve their quality of life as an outpatient. Connecting patients with sarcoma support groups may provide them with more relevant and intimate support.
肉瘤是一种罕见的癌症，给患者的生活带来了巨大的负担。许多幸存者因治疗和疾病而长期残疾。患者经常出现功能问题、心理健康状况较差、生活质量下降和人际关系问题。有必要探讨肉瘤患者的未满足需求，因为目前尚不清楚这些问题是如何解决的。本研究旨在探讨已确诊肉瘤患者的未满足需求。
参与者为先前被诊断患有肉瘤的个体（n=22）。参与者完成了一份关于他们与肉瘤相关的未满足需求的半结构化访谈。使用主题分析对转录本进行分析。
确定了五个总体主题：日常生活、经济需求、信息缺乏、社区需求和医疗保健系统导航。参与者报告了一系列实际需求，包括交通、对治疗的理解有限以及经济问题。参与者还描述了与经历过类似经历的人联系的需求。
肉瘤患者有基本的需求，这些需求影响他们以最佳方式生活的能力。卫生服务机构需要通过提供个性化的转介、支持和协调，在患者的每个阶段更好地为肉瘤患者提供服务。需要支持干预措施来帮助患者适应肉瘤并提高他们作为门诊患者的生活质量。将患者与肉瘤支持小组联系起来可能会为他们提供更相关和更贴心的支持。
