Investigating the Needs of Childhood Cancer Survivors: The UnReported Experience

调查儿童癌症幸存者的需求：未报道的经历

• 批准号: 8013834
• 负责人: CHERYL Lorane COX
• 金额: $ 15.06万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-01-15 至 2011-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8013834
• 关键词: Address; Adult; Affect; Aftercare; Age-Years; Aging; Am 80; Behavior; Caring; Childhood; Childhood Cancer Survivor Study; Clinic; Communities; Development; Economics; Enrollment; Evaluation; Feasibility Studies; Foundations; Future; Health; Health Services Accessibility; Healthcare; Heterogeneity; Intervention; Knowledge; Late Effects; Length; Life; Long-Term Survivors; Longitudinal Surveys; Malignant Childhood Neoplasm; Malignant Neoplasms; Methods; Minority; Modeling; Needs Assessment; North America; Participant; Patient Self-Report; Perception; Performance; Population; Prevention strategy; Public Health; Quality of life; Research; Research Infrastructure; Research Personnel; Resources; Respondent; Rural; Sampling; Sampling Studies; Services; Shapes; Stratification; Surveys; Survivors; Time; Triage; aged; base; cancer care; cancer therapy; childhood cancer survivor; cohort; design; experience; instrument; interest; meetings; primary care setting; prospective; psychologic; public health relevance; response; rural area; social; young adult

DESCRIPTION (provided by applicant): As the pediatric malignancy cure rate approaches 80%, the growing population of childhood cancer survivors now comprises 1 in 640 young adults 20 to 39 years of age. Of the 13,725 participants in the Childhood Cancer Survivor Study (CCSS), North America's largest survivor cohort, 26% are now 41 years of age, and 2.8% are 51 years of age. While the late effects of childhood cancer and its treatment have been studied extensively, we know very little about the self-perceived health care needs or the long-term health experience of these adult survivors. Pediatric cancer therapies can affect all aspects of a survivor's life: physical, psychological, social, economic, and existential. The impact of therapy is likely to precipitate different survivor needs at different time points, owing to the heterogeneity of childhood cancers, treatment exposures, survivor behaviors, and informed access to health care. Perceptions of survivors' health-related needs have been shaped largely by investigators' research interests. No study has addressed the self-reported needs of childhood cancer survivors older than 40 years or comprehensively addressed the health-related needs of survivors aged 25 or older. Moreover, the under-representation of minorities and rural residents has not been addressed. To prepare for a large-scale, ongoing, longitudinal needs assessment of the rapidly growing population of childhood cancer survivors, we propose a feasibility study that will use the unique resource of the CCSS cohort to: 1) examine the construct validity, short-term stability, internal consistency, and item- response performance of a multifactorial needs assessment self-report instrument for childhood cancer survivors; 2) inform strata selection for the larger study and increase the diversity of the target sample by oversampling minority and rural-dwelling survivors; 3) preliminarily describe the met and unmet needs and their covariates in a large, stratified, random sample of childhood cancer survivors; and 4) evaluate the sample selection methods, length of time to complete recruitment, and response rates. The results of this feasibility study will inform and lay the foundation for longitudinal surveys that will provide the basis for models of comprehensive cancer care that specifically target the needs of aging childhood cancer survivors. PUBLIC HEALTH RELEVANCE: The pediatric malignancy cure rate is now nearly 80%, and the growing population of childhood cancer survivors comprises 1 in 640 young adults 20 to 39 years of age. Within the Childhood Cancer Survivor Study (CCSS), North America's largest survivor cohort, 26% are now e 41 years of age, and 2.8% are e 51 years of age. While the late effects of childhood cancer and its treatment have been studied extensively, we know very little about the self-perceived health care needs or the long-term health experience of these adult survivors. The results of this feasibility study will inform and lay the groundwork for longitudinal surveys that will provide the basis for models of comprehensive cancer care that specifically target the needs of aging childhood cancer survivors.

描述（由申请人提供）：随着儿科恶性肿瘤治愈率接近 80%，儿童癌症幸存者人数不断增加，目前每 640 名 20 至 39 岁的年轻人中就有 1 人。北美最大的幸存者队列——儿童癌症幸存者研究 (CCSS) 的 13,725 名参与者中，26% 的人现年 41 岁，2.8% 的人现年 51 岁。虽然儿童癌症的后期影响及其治疗已被广泛研究，但我们对这些成年幸存者的自我感知的医疗保健需求或长期健康经历知之甚少。儿科癌症治疗可以影响幸存者生活的各个方面：身体、心理、社会、经济和生存。由于儿童癌症、治疗暴露、幸存者行为和获得医疗保健的知情权的异质性，治疗的影响可能会在不同时间点引发不同的幸存者需求。对幸存者健康相关需求的看法很大程度上取决于调查人员的研究兴趣。尚无研究解决 40 岁以上儿童癌症幸存者的自我报告需求，或全面解决 25 岁或以上幸存者的健康相关需求。此外，少数民族和农村居民代表性不足的问题也没有得到解决。为了准备对快速增长的儿童癌症幸存者群体进行大规模、持续、纵向的需求评估，我们提出了一项可行性研究，该研究将利用 CCSS 队列的独特资源来：1）检查儿童癌症幸存者多因素需求评估自我报告工具的结构有效性、短期稳定性、内部一致性和项目反应性能； 2）为更大规模的研究提供分层选择信息，并通过对少数族裔和农村居民幸存者进行过采样来增加目标样本的多样性； 3）初步描述儿童癌症幸存者的大型分层随机样本中已满足和未满足的需求及其协变量； 4) 评估样本选择方法、完成招募的时间长度以及回复率。这项可行性研究的结果将为纵向调查提供信息并奠定基础，纵向调查将为专门针对老年儿童癌症幸存者需求的综合癌症护理模式提供基础。 公共健康相关性：儿科恶性肿瘤治愈率目前接近 80%，儿童癌症幸存者人数不断增加，每 640 名 20 至 39 岁的年轻人中就有 1 人。在北美最大的幸存者群体——儿童癌症幸存者研究 (CCSS) 中，26% 的人目前年龄在 41 岁左右，2.8% 的人年龄在 51 岁以下。虽然儿童癌症的后期影响及其治疗已被广泛研究，但我们对这些成年幸存者的自我感知的医疗保健需求或长期健康经历知之甚少。这项可行性研究的结果将为纵向调查提供信息并奠定基础，这些调查将为专门针对老年儿童癌症幸存者的需求的综合癌症护理模型提供基础。