Grant Number:	5R01CA218398-05 Interpret this number
Primary Investigator:	Salsman, John
Organization:	Wake Forest University Health Sciences
Project Title:	Optimizing Health Related Quality of Life Measurement in Adolescent and Young Adult Oncology: a Promising Solution
Fiscal Year:	2021

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.




Indicators of developmental status among adolescents and young adults with cancer: Perceived adult status, social milestones, and health-related quality of life.
Authors: Fladeboe K.M. , Siembida E.J. , Ip E. , Rosenberg A.R. , Snyder M.A. , Salsman J.M. .
Source: Psycho-oncology, 2023 Sep; 32(9), p. 1363-1371.
EPub date: 2023-06-28.
PMID: 37381114
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A Developmental Science Approach to Informing Age Subgroups in Adolescent and Young Adult Cancer Research.
Authors: Siembida E.J. , Fladeboe K.M. , Ip E. , Zebrack B. , Snyder M.A. , Salsman J.M. .
Source: The Journal of adolescent health : official publication of the Society for Adolescent Medicine, 2023 Sep; 73(3), p. 543-552.
EPub date: 2023-06-08.
PMID: 37294255
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A systematic review of health-related quality of life outcomes in psychosocial intervention trials for adolescent and young adult cancer survivors.
Authors: Murphy K.M. , Siembida E. , Lau N. , Berkman A. , Roth M. , Salsman J.M. .
Source: Critical reviews in oncology/hematology, 2023 Aug; 188, p. 104045.
EPub date: 2023-06-02.
PMID: 37269881
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Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity.
Authors: Canzona M.R. , Murphy K. , Victorson D. , Harry O. , Clayman M.L. , McLean T.W. , Golden S.L. , Patel B. , Strom C. , Little-Greene D. , et al. .
Source: JCO oncology practice, 2023 Jul; 19(7), p. 509-515.
EPub date: 2023-04-14.
PMID: 37058685
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Financial burden for caregivers of adolescents and young adults with cancer.
Authors: Nightingale C.L. , Canzona M.R. , Danhauer S.C. , Reeve B.B. , Howard D.S. , Tucker-Seeley R.D. , Golden S.L.S. , Little-Greene D. , Roth M.E. , Victorson D.E. , et al. .
Source: Psycho-oncology, 2022 Aug; 31(8), p. 1354-1364.
EPub date: 2022-04-20.
PMID: 35416372
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Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer.
Authors: Danhauer S.C. , Canzona M. , Tucker-Seeley R.D. , Reeve B.B. , Nightingale C.L. , Howard D.S. , Puccinelli-Ortega N. , Little-Greene D. , Salsman J.M. .
Source: Psycho-oncology, 2022 Apr; 31(4), p. 597-605.
EPub date: 2021-11-05.
PMID: 34699110
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Financial Hardship in Adolescent and Young Adult Oncology: The Need for Multidimensional and Multilevel Approaches.
Authors: Salsman J.M. , Kircher S.M. .
Source: JCO oncology practice, 2022 Mar; 18(3), p. 173-176.
EPub date: 2021-11-22.
PMID: 34807736
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Inclusion of Patient-Reported Outcomes in Adolescent and Young Adult Phase III Therapeutic Trials: An Analysis of Cancer Clinical Trials Registered on ClinicalTrials.gov.
Authors: Berkman A.M. , Murphy K.M. , Siembida E.J. , Lau N. , Geng Y. , Parsons S.K. , Salsman J.M. , Roth M.E. .
Source: Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, 2021 Dec; 24(12), p. 1820-1827.
EPub date: 2021-08-08.
PMID: 34838280
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Attitudes and practices about fertility preservation discussions among young adults with cancer treated at a comprehensive cancer center: patient and oncologist perspectives.
Authors: Salsman J.M. , Yanez B. , Snyder M.A. , Avina A.R. , Clayman M.L. , Smith K.N. , Purnell K. , Victorson D. .
Source: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2021 Oct; 29(10), p. 5945-5955.
EPub date: 2021-03-25.
PMID: 33763727
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A conceptual model of fertility concerns among adolescents and young adults with cancer.
Authors: Canzona M.R. , Victorson D.E. , Murphy K. , Clayman M.L. , Patel B. , Puccinelli-Ortega N. , McLean T.W. , Harry O. , Little-Greene D. , Salsman J.M. .
Source: Psycho-oncology, 2021 Aug; 30(8), p. 1383-1392.
EPub date: 2021-04-17.
PMID: 33843104
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Systematic review of financial burden assessment in cancer: Evaluation of measures and utility among adolescents and young adults and caregivers.
Authors: Salsman J.M. , Danhauer S.C. , Moore J.B. , Ip E.H. , McLouth L.E. , Nightingale C.L. , Cheung C.K. , Bingen K.M. , Tucker-Seeley R.D. , Little-Greene D. , et al. .
Source: Cancer, 2021-06-01; 127(11), p. 1739-1748.
EPub date: 2021-04-13.
PMID: 33849081
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Reply to the Importance of a collaborative health-related quality of life measurement strategy for adolescents and young adults with cancer.
Authors: Salsman J.M. , Danhauer S.C. , Moore J.B. , Canzona M.R. , Victorson D.E. , Zebrack B.J. , Reeve B.B. .
Source: Cancer, 2021-05-15; 127(10), p. 1714-1715.
EPub date: 2021-01-26.
PMID: 33496344
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A qualitative assessment of body image in adolescents and young adults (AYAs) with cancer.
Authors: Moore J.B. , Canzona M.R. , Puccinelli-Ortega N. , Little-Greene D. , Duckworth K.E. , Fingeret M.C. , Ip E.H. , Sanford S.D. , Salsman J.M. .
Source: Psycho-oncology, 2021 Apr; 30(4), p. 614-622.
EPub date: 2020-12-19.
PMID: 33275802
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Measuring health-related quality of life in adolescent and young adult cancer survivors with the National Institutes of Health Patient-Reported Outcomes Measurement Information System^® : Comparing adolescent, emerging adult, and young adult survivor perspectives.
Authors: Siembida E.J. , Reeve B.B. , Zebrack B.J. , Snyder M.A. , Salsman J.M. .
Source: Psycho-oncology, 2021 Mar; 30(3), p. 303-311.
EPub date: 2020-10-30.
PMID: 33073416
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Optimizing the measurement of health-related quality of life in adolescents and young adults with cancer.
Authors: Salsman J.M. , Danhauer S.C. , Moore J.B. , Canzona M.R. , Victorson D.E. , Zebrack B.J. , Reeve B.B. .
Source: Cancer, 2020-11-15; 126(22), p. 4818-4824.
EPub date: 2020-09-10.
PMID: 32910454
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Understanding, measuring, and addressing the financial impact of cancer on adolescents and young adults.
Authors: Salsman J.M. , Bingen K. , Barr R.D. , Freyer D.R. .
Source: Pediatric blood & cancer, 2019 Jul; 66(7), p. e27660.
EPub date: 2019-02-12.
PMID: 30756484
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