Kopp Brianna C, Crump R Trafford, Weis Ezekiel
Research and Evaluation, algo+med, Calgary, Alb.
Department of Surgery, University of Calgary, Calgary, Alb.
Can J Ophthalmol. 2017 Apr;52(2):181-185. doi: 10.1016/j.jcjo.2016.10.005. Epub 2016 Dec 20.
There are limited studies on uveal melanoma and patient quality of life. However, the burden of implementing a patient-reported outcome measure to collect this information in a clinical setting is unknown. The objectives of this study were (i) to understand the issues of quality of life that are most important to patients undergoing treatment for uveal melanoma, (ii) to explore patient views on the European Organization for Research and Treatment of Cancer's (EORTC) ophthalmic oncology quality of life questionnaire (QLQ-OPT30), and (iii) to assess patient willingness to complete questionnaires measuring quality of life on an ongoing basis.
This was a qualitative study.
The study included 10 patients treated for uveal melanoma with brachytherapy at the Alberta Ocular Brachytherapy Program, with a mean follow-up period of 16.3 months (range 5-33 months) after diagnosis.
The participants completed a qualitative interview over the phone with a trained interviewer between November 2014 and January 2015. Participants completed the QLQ-OPT30 according to their current symptoms and then elaborated on their responses. The participants then completed a semistructured interview to provide more information about the symptoms or issues that had the most impact on quality of life.
The participants expressed positive feelings about the QLQ-OPT30; however, the participants' responses revealed that several themes, including mental health, impact of diagnosis and treatment on family, travel and financial burdens of treatment, and impact on work and home life, were missing in the questionnaire.
The QLQ-OPT30 performed well, but some missing constructs were identified. Furthermore, participants took 23 minutes to complete the QLQ-OPT30 with a trained interviewer, and this could present logistical challenges when using it at the point of care.
关于葡萄膜黑色素瘤与患者生活质量的研究有限。然而，在临床环境中采用患者报告结局测量法来收集此类信息的负担尚不清楚。本研究的目的是：（i）了解对于接受葡萄膜黑色素瘤治疗的患者而言最重要的生活质量问题；（ii）探究患者对欧洲癌症研究与治疗组织（EORTC）眼科肿瘤生活质量问卷（QLQ - OPT30）的看法；（iii）评估患者持续完成生活质量调查问卷的意愿。
这是一项定性研究。
该研究纳入了10名在艾伯塔省眼近距离放射治疗项目接受近距离放射治疗的葡萄膜黑色素瘤患者，诊断后平均随访期为16.3个月（范围5 - 33个月）。
2014年11月至2015年1月期间，参与者通过电话与一名经过培训的访谈者完成了一次定性访谈。参与者根据其当前症状完成了QLQ - OPT30问卷，随后详细阐述了他们的回答。接着，参与者完成了一次半结构化访谈，以提供更多关于对生活质量影响最大的症状或问题的信息。
参与者对QLQ - OPT30问卷表达了积极看法；然而，参与者的回答显示，该问卷遗漏了几个主题，包括心理健康、诊断和治疗对家庭的影响、治疗的旅行和经济负担以及对工作和家庭生活的影响。
QLQ - OPT30表现良好，但发现了一些遗漏的结构。此外，在一名经过培训的访谈者协助下，参与者完成QLQ - OPT30问卷用时23分钟，在护理点使用该问卷时这可能带来后勤方面的挑战。
