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Study Protocol

Comprehensive Assessment of Incidence, Risk Factors, and Mechanisms of Impaired Medical and Psychosocial Health Outcomes among Adolescents and Young Adults with Cancer: Protocol of the Prospective Observational COMPRAYA Cohort Study

1
Department of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands
2
Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands
3
Division of Clinical Studies, Institute of Cancer Research, London SM2 5NG, UK
4
Department of Human Genetics, Radboud University Medical Center, 6525 GA Nijmegen, The Netherlands
5
Department of Pathology, Radboud University Medical Center, 6525 GA Nijmegen, The Netherlands
6
Research & Development, Netherlands Comprehensive Cancer Organization (IKNL), 3511 DT Utrecht, The Netherlands
7
Department of Medical and Clinical Psychology, Tilburg University, 5037 AB Tilburg, The Netherlands
8
Department of Medical Psychology, Radboud Institute for Health Sciences, Radboud University Medical Centre, 6525 GA Nijmegen, The Netherlands
9
Department of Neurology, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands
10
Dutch AYA Care Network, 3511 DT Utrecht, The Netherlands
11
Department of Medical Oncology, University Medical Center Groningen, 9713 GZ Groningen, The Netherlands
12
Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands
*
Author to whom correspondence should be addressed.
Academic Editor: Riccardo Soffietti
Cancers 2021, 13(10), 2348; https://doi.org/10.3390/cancers13102348
Received: 13 April 2021 / Revised: 30 April 2021 / Accepted: 6 May 2021 / Published: 13 May 2021
(This article belongs to the Special Issue Adolescent and Young Adult Oncology)
Adolescents and young adults (AYA), aged 18–39 years at first cancer diagnosis, are recognized as a distinct population within the oncology community due to the unique challenges they encounter including recognition, diagnosis, treatment, and monitoring of their disease. It is imperative for advances in the field of AYA oncology to pool data sources (patient-reported outcomes, clinical, treatment, genetic, and biological data) across institutions and countries and create large cohorts that include the full range of AYA ages and diagnoses to be able to address the many pressing questions that remain unanswered in this vulnerable population. The Dutch COMPRAYA study aims to examine the incidence, risk factors, and mechanisms of impaired health outcomes (short- and long-term medical and psychosocial effects) over time among AYA cancer patients. The overarching aim is to provide a research infrastructure for (future) data analyses and observational retrospective/prospective ancillary studies and to expand data collection to other countries.
Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, and lack of centralized cancer care, age-adjusted expertise, and follow-up care. This group presents with a unique spectrum of cancers, distinct tumor biology, cancer risk factors, developmental challenges, and treatment regimens that differ from children and older adults. It is imperative for advances in the field of AYA oncology to pool data sources across institutions and create large cohorts to address the many pressing questions that remain unanswered in this vulnerable population. We will create a nationwide infrastructure (COMPRAYA) for research into the incidence, predictive/prognostic markers, and underlying mechanisms of medical and psychosocial outcomes for AYA between 18–39 years diagnosed with cancer. A prospective, observational cohort of (n = 4000), will be established. Patients will be asked to (1) complete patient-reported outcome measures; (2) donate a blood, hair, and stool samples (to obtain biochemical, hormonal, and inflammation parameters, and germline DNA); (3) give consent for use of routinely archived tumor tissue and clinical data extraction from medical records and registries; (4) have a clinic visit to assess vital parameters. Systematic and comprehensive collection of patient and tumor characteristics of AYA will support the development of evidence-based AYA care programs and guidelines. View Full-Text
Keywords: adolescent and young adult oncology; late effects; health-related quality of life; survival; genetic risk adolescent and young adult oncology; late effects; health-related quality of life; survival; genetic risk
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Figure 1

MDPI and ACS Style

Husson, O.; Ligtenberg, M.J.L.; van de Poll-Franse, L.V.; Prins, J.B.; van den Bent, M.J.; van Eenbergen, M.C.; Fles, R.; Manten-Horst, E.; Gietema, J.A.; van der Graaf, W.T.A. Comprehensive Assessment of Incidence, Risk Factors, and Mechanisms of Impaired Medical and Psychosocial Health Outcomes among Adolescents and Young Adults with Cancer: Protocol of the Prospective Observational COMPRAYA Cohort Study. Cancers 2021, 13, 2348. https://doi.org/10.3390/cancers13102348

AMA Style

Husson O, Ligtenberg MJL, van de Poll-Franse LV, Prins JB, van den Bent MJ, van Eenbergen MC, Fles R, Manten-Horst E, Gietema JA, van der Graaf WTA. Comprehensive Assessment of Incidence, Risk Factors, and Mechanisms of Impaired Medical and Psychosocial Health Outcomes among Adolescents and Young Adults with Cancer: Protocol of the Prospective Observational COMPRAYA Cohort Study. Cancers. 2021; 13(10):2348. https://doi.org/10.3390/cancers13102348

Chicago/Turabian Style

Husson, Olga, Marjolijn J.L. Ligtenberg, Lonneke V. van de Poll-Franse, Judith B. Prins, Martin J. van den Bent, Mies C. van Eenbergen, Renske Fles, Eveliene Manten-Horst, Jourik A. Gietema, and Winette T.A. van der Graaf. 2021. "Comprehensive Assessment of Incidence, Risk Factors, and Mechanisms of Impaired Medical and Psychosocial Health Outcomes among Adolescents and Young Adults with Cancer: Protocol of the Prospective Observational COMPRAYA Cohort Study" Cancers 13, no. 10: 2348. https://doi.org/10.3390/cancers13102348

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