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

MarjolijnJ. L. Ligtenberg¹  Olga Husson²  Renske Fles²  WinetteT. A. van der Graaf²  JourikA. Gietema³  JudithB. Prins⁴  MartinJ. van den Bent⁵  LonnekeV. van de Poll-Franse⁶  Eveliene Manten-Horst⁷  MiesC. van Eenbergen⁸ 

[1] Department of Human Genetics, Radboud University Medical Center, 6525 GA Nijmegen, The Netherlands;Department of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands;Department of Medical Oncology, University Medical Center Groningen, 9713 GZ Groningen, The Netherlands;Department of Medical Psychology, Radboud Institute for Health Sciences, Radboud University Medical Centre, 6525 GA Nijmegen, The Netherlands;Department of Neurology, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands;Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands;Dutch AYA Care Network, 3511 DT Utrecht, The Netherlands;Research & Development, Netherlands Comprehensive Cancer Organization (IKNL), 3511 DT Utrecht, The Netherlands;

关键词: adolescent and young adult oncology;    late effects;    health-related quality of life;    survival;    genetic risk;   

DOI  :  10.3390/cancers13102348

来源: DOAJ

【 摘 要 】

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.

【 授权许可】

Unknown