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

青少年癌症幸存者

• 批准号: 8932766
• 负责人: Amy J Walker
• 金额: $ 7.63万
• 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 2017-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8932766
• 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; 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; healthy lifestyle; high risk; improved; mortality; peer; psychosocial; survivorship; therapy development; treatment effect; treatment program

DESCRIPTION: 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.

描述：在美国，每年大约有5000名14至18岁的青少年被诊断患有癌症，估计80%将成为长期幸存者。青少年癌症长期幸存者在治疗相关的后期效应方面的风险最高，使他们易患癌症相关的发病率和早期死亡，以及负面的社会心理和发育后果。对于青少年幸存者和他们的父母来说，一个特别具有挑战性的时期是治疗末期。治疗结束意味着青少年不再接受治疗，青少年和父母与卫生保健提供者的互动越来越少，越来越不频繁。治疗结束给青少年和他们的父母带来了巨大的挑战，但缺乏研究描述了青少年或父母在这个关键时刻的经历。本初步研究的具体目的是：1)描述和比较青少年癌症幸存者（14至18岁）及其父母在治疗结束和随访时的担忧、感知挑战和管理这些问题的方法；2)描述治疗结束和随访时青少年的行为情绪功能和家长的焦虑；3)评估本研究方案在招募青少年双亲的有效性。40名参与者（20名青少年，20名家长）将从太平洋西北地区的综合癌症中心招募。将招募两个亚组：1)患有急性淋巴细胞白血病和非霍奇金b细胞淋巴瘤的青少年及其父母；2)患有实体瘤、霍奇金病和其他非霍奇金淋巴瘤的青少年及其父母。将在治疗结束后的一个月内、三个月和六个月分别对青少年和家长进行半结构化的电话访谈。采用归纳编码的内容分析方法对访谈数据进行分析。采用标准化问卷来测量青少年的情绪行为功能和父母焦虑。研究结果将为最终制定更大的校外拨款和青少年-父母干预措施提供信息，以改善治疗结束后的过渡。这项研究将是解决青少年癌症幸存者及其父母治疗后的健康和发展需求的重要的第一步。

项目成果

Walking on Eggshells: Parents' First Year After Their Adolescent Completes Their Cancer Treatment [Formula: see text].

如履薄冰：父母在青少年完成癌症治疗后的第一年[公式：见文字]。

• DOI: 10.1177/1043454220909788
• 发表时间: 2020
• 期刊: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses
• 作者: Walker,AmyJ;Lewis,FrancesM;Rosenberg,AbbyR
• 通讯作者: Rosenberg,AbbyR

Trying to Feel Normal Again: Early Survivorship for Adolescent Cancer Survivors.

尝试再次恢复正常：青少年癌症幸存者的早期生存。

• DOI: 10.1097/ncc.0000000000000629
• 发表时间: 2019
• 期刊: Cancer nursing
• 影响因子: 2.6
• 作者: Walker,AmyJ;Lewis,FrancesM;Lin,Yuting;Zahlis,Ellen;Rosenberg,AbbyR
• 通讯作者: Rosenberg,AbbyR