Vogel Rachel I, Strayer Lori G, Ahmed Rehana L, Blaes Anne, Lazovich DeAnn
Masonic Cancer Center, University of Minnesota, Minneapolis, MN, USA.
Division of Gynecologic Oncology, University of Minnesota, Minneapolis, MN, USA.
J Skin Cancer. 2017;2017:2041872. doi: 10.1155/2017/2041872. Epub 2017 May 28.
The goal of this study was to identify a relevant and inclusive list of quality of life issues among long-term survivors of melanoma. Individuals diagnosed with stage I-III cutaneous melanoma and had survived 1-5 years, ages 18-65 years at diagnosis, were recruited. Five focus groups were conducted with 33 participants in total. Discussions centered on participants' experiences at diagnosis, as well as ongoing physical, emotional, and social concerns, and behavioral changes since diagnosis. The majority of participants reported shock, fear, and feeling overwhelmed at the time of diagnosis. Some reported lingering physical concerns, including pain, numbness, and lymphedema, while a few reported no lasting issues. Emotional concerns were common, with most reporting anxiety. Several also noted feeling lonely and isolated. Social concerns included alteration of activities to avoid sun exposure, issues with family communication, and frustration with the lack of appreciation of the seriousness of melanoma by others. Finally, while many participants reported changes to their sun exposure and UV-protection behaviors, some reported little to no change. The shared experiences among participants in this study confirm the unique nature of melanoma and the need for interventions designed to improve the health and quality of life of melanoma survivors.
本研究的目的是确定一份与黑色素瘤长期幸存者生活质量问题相关且全面的清单。招募了诊断为I - III期皮肤黑色素瘤且已存活1至5年、诊断时年龄在18至65岁的个体。总共对33名参与者进行了5个焦点小组讨论。讨论集中在参与者诊断时的经历，以及诊断后持续存在的身体、情感和社会方面的担忧，以及行为变化。大多数参与者报告在诊断时感到震惊、恐惧和不知所措。一些人报告了持续存在的身体问题，包括疼痛、麻木和淋巴水肿，而少数人报告没有持久的问题。情感方面的担忧很常见，大多数人报告有焦虑情绪。还有几个人指出感到孤独和孤立。社会方面的担忧包括改变活动以避免阳光照射、家庭沟通问题，以及因他人对黑色素瘤严重性缺乏认识而感到沮丧。最后，虽然许多参与者报告了他们在阳光照射和紫外线防护行为上的变化，但一些人报告几乎没有变化。本研究中参与者的共同经历证实了黑色素瘤的独特性质，以及需要设计干预措施来改善黑色素瘤幸存者的健康和生活质量。
