Optimizing health related quality of life measurement in adolescent and young adult oncology: A PROMISing solution

项目总结 在青少年和年轻人中，每年大约有70,000例新的癌症诊断(AYAS； 15-39岁)，在美国有近200万人被确诊或幸存下来 把癌症当做是阿雅。尽管AYA幸存者的数量很高，但AYA的存活率并没有跟上 与年轻或年长的同龄人不同。阿亚斯面临着独特的挑战，因为身体上，认知上， 以及心理社会发育里程碑，这些里程碑可能会因为他们的癌症经历而被破坏。在……里面 除了与年龄相关的存活率差异外，AYA还面临着更大的心理和心理障碍风险 与患有癌症的老年人相比，他们的经济状况不佳。因此，评估和更好地理解 这一重要的、服务不足的群体在管理时的独特需求和与健康相关的生活质量(HRQOL) 他们的癌症经验对于优化和定制支持性护理方法至关重要。 存在一些描述症状类型、负担和功能影响的HRQOL概念框架 患有癌症的AYA所经历的，但大多数HRQOL测量未能涵盖HRQOL领域的范围 这对AYA来说很重要。此外，专门为AYA制定的HRQOL测量缺乏共同的项目 以及15-39岁年龄段的标准化评分方法，限制了理解 这个年龄段的独特需求。美国国立卫生研究院患者报告结局测量信息系统 (PROMIS)评估大多数相关的HRQOL领域(疼痛、疲劳、焦虑、抑郁、认知 功能、身体功能、性功能和社会支持)，但尚未在AYAS中得到验证 PROMIS不包括财务困境、身体形象问题或生育/生育等关键领域。 父母的关注提供了一个完整的视角来看待患有癌症的AYA患者的HRQOL。 我们研究的主要目的是扩大PROMIS的使用，以提供可靠和有效的评估 AYA关注的重要的高质量生活质量问题。为实现这一目标，我们提出了以下具体目标： 为AYA开发财务困境、身体形象问题和生育/育儿问题的项目库， 使用PROMIS测量开发方法的癌症；(2)校准题库和缩写形式 经济困难，身体形象问题，生育/为人父母的问题 有无癌症的AYA样本；以及(3)验证新开发的财务困境的简短形式， 关注身体形象，关注生育/为人父母，以及现有的Promis缩写形式 发育和临床上的多样性，癌症AYA的预期样本。 在这项研究研究的最后，我们将拥有一个心理测量学上强大的、最先进的测量系统 根据AYA独特的HRQOL需求量身定做。通过识别、适应和开发可靠的、 对于患有癌症的AYA患者，我们将为这些未得到充分服务的患者提供有效的、有反应的HRQOL测量 发声并提供临床医生和研究人员加强以患者为中心的护理所需的评估工具。

PROJECT SUMMARY There are approximately 70,000 new diagnoses of cancer annually in adolescents and young adults (AYAs; ages 15-39), and nearly 2 million people in the United States are living with or have survived being diagnosed with cancer as an AYA. Despite the high number of AYA survivors, survival rates of AYAs have not kept pace with those of their younger or older counterparts. AYAs face unique challenges given the physical, cognitive, and psychosocial developmental milestones that may be disrupted as a result of their cancer experience. In addition to the age-related disparities in survival rates, AYAs are at greater risk of significant psychological and financial distress compared to older adults with cancer. Accordingly, assessing and better understanding the unique needs and health-related quality of life (HRQOL) of this important, underserved group as they manage their cancer experience is essential in order to optimize and tailor supportive care approaches. A few HRQOL conceptual frameworks exist that describe the types of symptom burden and functional impact experienced by AYAs with cancer, but most HRQOL measures fail to capture the range of HRQOL domains that are important to AYAs. Further, measures of HRQOL specifically developed for AYAs lack common items and standardized scoring approaches across the age range of 15-39, limiting the ability to understand the unique needs of this age group. The NIH’s Patient-Reported Outcomes Measurement Information System (PROMIS) assesses most of the relevant HRQOL domains (pain, fatigue, anxiety, depression, cognitive functioning, physical functioning, sexual functioning, and social support) but has not been validated in AYAs and PROMIS does not include key domains such as financial distress, body image concerns, or fertility/ parenthood concerns that provide a complete perspective of HRQOL in AYAs with cancer. The main objective of our study is to expand the use of PROMIS to provide reliable and valid assessment of important HRQOL concerns for AYAs. To accomplish this goal, we propose the following specific aims: (1) develop item pools of financial distress, body image concerns, and fertility/parenthood concerns for AYAs with cancer using PROMIS measurement development methodologies; (2) calibrate item banks and short forms of financial distress, body image concerns, and fertility/ parenthood concerns in a large, developmentally diverse sample of AYAs with and without cancer; and (3) validate newly developed short forms of financial distress, body image concerns, and fertility/ parenthood concerns along with existing PROMIS short forms in a developmentally and clinically diverse, prospective sample of AYAs with cancer. At the end of this research study, we will have a psychometrically robust, state-of-the-art measurement system tailored to AYAs’ unique HRQOL needs. Through the identification, adaptation, and development of reliable, valid, and responsive measures of HRQOL for AYAs with cancer, we will give these underserved patients a voice and provide the assessment tools clinicians and researchers need to enhance patient-centered care.