Adolescent Cancer Survivors & Parents: Worries & Challenges at End-of-Treatment

项目摘要/摘要 在美国，每年约有5000名14至18岁的青少年被诊断出癌症， 估计80%的人将成为长期幸存者。青春期癌症长期幸存者有一些 与治疗相关的后遗症的风险最高，容易导致癌症相关的发病率和早期 死亡率，以及消极的心理社会和发展后果。这是一个特别具有挑战性的时期 青少年幸存者和他们的父母是治疗的终点。治疗结束意味着青少年没有 接受治疗的时间更长，与医疗保健提供者的互动变得越来越少和频繁 为青少年和家长准备的。治疗结束给青少年及其父母带来了巨大的挑战， 但很少有研究描述青少年或父母在这一关头的经历。具体目标 这项初步研究的目的是：1)描述和比较焦虑、感知到的挑战和管理方法 青少年癌症幸存者(14至18岁)及其父母在治疗结束和随访时的这些问题 描述青少年在治疗结束时的行为-情绪功能和父母的焦虑 和跟踪；以及3)评估该研究招募青少年父母的方案的有效性 双子星。40名参与者(20名青少年，20名家长)将从综合癌症中心招募 在太平洋西北部。将招募两个亚组：1)患有急性淋巴细胞白血病的青少年 和非霍奇金B细胞淋巴瘤及其父母和患有实体瘤的青少年，霍奇金 疾病，以及其他非霍奇金淋巴瘤及其父母。半结构化电话采访将是 青少年和父母在治疗结束后一个月内和在三个月和三个月时分别进行 六个月。访谈数据将采用归纳编码的内容分析方法进行分析。标准化 调查问卷将用来测量青少年的情绪行为功能和父母的焦虑。 研究结果将为最终发展更大的校外补助金和青少年父母提供信息 改善治疗结束过渡的干预措施。这项研究将是解决以下问题的第一个重要步骤 青少年癌症幸存者及其父母治疗后的健康和发育需求。

Project summary/abstract Approximately 5,000 adolescents ages 14 to 18 years will be diagnosed with cancer each year in the US and an estimated 80% will become long-term survivors. Adolescent cancer long-term survivors have some of the highest risks for treatment-related late effects, predisposing them to cancer-related morbidity and early mortality, as well as negative psychosocial and developmental outcomes. A particularly challenging time for adolescent survivors and their parents is end-of-treatment. End-of-treatment means the adolescent is no longer receiving treatment, and interactions with health care providers become much fewer and less frequent for adolescents and parents. End-of treatment presents intense challenges for adolescents and their parents, but a paucity of studies have described adolescent or parent's experiences at this juncture. The specific aims of this pilot study are to: 1) Describe and compare the worries, perceived challenges, and ways of managing these issues for adolescent cancer survivors (14 to 18 years) and their parents at end-of-treatment and follow- up; 2) Describe the behavioral-emotional functioning of adolescents and parents' anxiety at end-of-treatment and follow-up; and 3) Evaluate the effectiveness of the study's protocol for recruitment of adolescent-parent dyads. Forty participants (20 adolescents, 20 parents) will be recruited from a Comprehensive Cancer Center in the Pacific Northwest. Two subgroups will be recruited: 1) adolescents with acute lymphoblastic leukemia and non-Hodgkin's B-cell lymphoma and their parents and 2) adolescents with solid tumors, Hodgkin's disease, and other non-Hodgkin lymphomas and their parents. Semi-structured telephone interviews will be conducted separately for adolescents and parents within one month of the end-of-treatment and at three and six months. Content analysis with inductive coding will be used to analyze the interview data. Standardized questionnaires will be used to measure adolescents' emotional-behavioral functioning and parental anxiety. Study findings will inform the eventual development of a larger extramural grant and an adolescent-parent intervention to improve end-of-treatment transition. This study will be the first important step in addressing the health and developmental needs of adolescent cancer survivors and their parents after treatment.