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

优化青少年和年轻成人肿瘤学中与健康相关的生活质量测量：一个有希望的解决方案

• 批准号: 10208801
• 负责人: John Salsman
• 金额: $ 52.46万
• 依托单位: WAKE FOREST UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-07-01 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10208801
• 关键词: Adolescent; Adolescent and Young Adult; Adult; Adverse effects; Affect; Age; Anxiety; Assessment tool; Body Image; Cessation of life; Childhood; Clinical; Clinical Trials; Cognitive; Decision Making; Development; Diagnosis; Disease; Elderly; Face; Fatigue; Fertility; Financial Hardship; Future; Goals; Health Information System; Individual; Information Systems; Interview; Literature; Loneliness; Malignant Neoplasms; Measurement; Measures; Medical; Mental Depression; Methodology; Methods; Oncology; Pain; Patient Outcomes Assessments; Patient-Centered Care; Patients; Physical Function; Positioning Attribute; Psychometrics; Quality-of-Life Assessment; Research; Research Personnel; Risk; Sampling; Sex Functioning; Social Functioning; Social support; Standardization; Structure; Supportive care; Survival Rate; Survivors; Symptoms; System; Testing; Time; Underserved Population; United States; United States National Institutes of Health; Voice; age group; age related; cancer diagnosis; cancer type; cognitive function; cognitive interview; computerized; depressive symptoms; emerging adult; experience; health related quality of life; literacy; pediatric patients; prospective; psychological distress; psychosocial; research study; response; theories; young adult

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.

项目总结

项目成果

Optimizing the measurement of health-related quality of life in adolescents and young adults with cancer.

• DOI: 10.1002/cncr.33155
• 发表时间: 2020-11-15
• 期刊: Cancer
• 影响因子: 6.2
• 作者: Salsman JM;Danhauer SC;Moore JB;Canzona MR;Victorson DE;Zebrack BJ;Reeve BB
• 通讯作者: Reeve BB

Attitudes and practices about fertility preservation discussions among young adults with cancer treated at a comprehensive cancer center: patient and oncologist perspectives.

• DOI: 10.1007/s00520-021-06158-0
• 发表时间: 2021-10
• 期刊: SUPPORTIVE CARE IN CANCER
• 影响因子: 3.1
• 作者: Salsman, John M.;Yanez, Betina;Snyder, Mallory A.;Avina, Alexis R.;Clayman, Marla L.;Smith, Kristin N.;Purnell, Khouri;Victorson, David
• 通讯作者: Victorson, David

Indicators of developmental status among adolescents and young adults with cancer: Perceived adult status, social milestones, and health-related quality of life.

患有癌症的青少年和年轻人的发育状况指标：感知​​的成人状态、社会里程碑以及与健康相关的生活质量。

• DOI: 10.1002/pon.6186
• 发表时间: 2023
• 期刊: Psycho-oncology
• 影响因子: 3.6
• 作者: Fladeboe,KaitlynM;Siembida,ElizabethJ;Ip,Edward;Rosenberg,AbbyR;Snyder,MalloryA;Salsman,JohnM
• 通讯作者: Salsman,JohnM

A Developmental Science Approach to Informing Age Subgroups in Adolescent and Young Adult Cancer Research.

在青少年和年轻人癌症研究中告知年龄亚组的发展科学方法。

• DOI: 10.1016/j.jadohealth.2023.04.014
• 发表时间: 2023
• 期刊: The Journal of adolescent health : official publication of the Society for Adolescent Medicine
• 作者: Siembida,ElizabethJ;Fladeboe,KaitlynM;Ip,Edward;Zebrack,Brad;Snyder,MalloryA;Salsman,JohnM
• 通讯作者: Salsman,JohnM