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

青少年癌症幸存者

• 批准号: 8619872
• 负责人: Amy J Walker
• 金额: $ 7.87万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-28 至 2016-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8619872
• 关键词: Acute Lymphocytic Leukemia; Address; Adolescent; Aftercare; Age; Anxiety; B-Cell NonHodgkins Lymphoma; Behavior; Behavioral; Cancer Survivor; Caring; Child; Chronic Disease; Code; Comprehensive Cancer Center; Data; Databases; Development; Diagnosis; Effectiveness; Emotional; Extramural Activities; Face; Grant; Health; Health Personnel; Healthcare Systems; Hodgkin Disease; Infection; Injury; Intervention; Interview; Late Effects; Lead; Life; Life Style; Long-Term Survivors; Malignant Neoplasms; Measures; Morbidity - disease rate; Non-Hodgkin' s Lymphoma; Outcome; Pacific Northwest; Parents; Participant; Phase; Pilot Projects; Program Development; Protocols documentation; Questionnaires; Recruitment Activity; Risk; Role; Services; Social Environment; Solid Neoplasm; Structure; Subgroup; Survivors; Telephone Interviews; Time; base; cancer therapy; design; empowered; expectation; experience; follow-up; high risk; improved; mortality; peer; psychosocial; public health relevance; survivorship; therapy development; treatment effect; treatment program

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.

项目摘要/摘要 在美国，大约有5,000名14至18岁的青少年将被诊断出患有癌症 估计80％将成为长期幸存者。青春期癌症长期幸存者有一些 与治疗相关的晚期作用的最高风险，使其易于癌症相关的发病率和早期 死亡率以及负面的社会心理和发展结果。一个特别具有挑战性的时间 青少年幸存者及其父母是治疗的终结。治疗结束意味着青少年是没有的 更长的接受治疗，与医疗保健提供者的互动变得越来越少了 适用于青少年和父母。治疗终结给青少年及其父母带来了巨大的挑战， 但是很少研究描述了这个关头的青少年或父母的经历。具体目标 这项试点研究是：1）描述和比较忧虑，感知到的挑战和管理方式 这些问题针对青少年癌症幸存者（14至18年）及其父母在治疗结束和跟随 - 向上; 2）描述青少年和父母在治疗时的焦虑的行为情感功能 和跟进； 3）评估研究方案招募青少年父母的有效性 二元。将从一个综合的癌症中心招募40名参与者（20名青少年，20名父母） 在西北太平洋。将招募两个亚组：1）患有急性淋巴细胞白血病的青少年 和非霍奇金的B细胞淋巴瘤及其父母以及2）患有实体瘤的青少年，霍奇金的 疾病，其他非霍奇金淋巴瘤及其父母。半结构化电话采访将是 在治疗结束后的一个月内，在三个月内分别为青少年和父母进行。 六个月。归纳编码的内容分析将用于分析访谈数据。标准化 问卷将用于衡量青少年的情感行为功能和父母的焦虑。 研究结果将为最终的较大壁外赠款和青少年父母的发展提供信息 干预以改善治疗结束过渡。这项研究将是解决问题的第一步 治疗后，青少年癌症幸存者及其父母的健康和发展需求。