The Dutch AYA ‘Young and Cancer’ Platform: co-participation between patients and healthcare professionals

Cancer among AYAs (adolescents and young adults) is rare (Lancet Oncol 2018). In the Netherlands approximately 2700 AYA patients (18-35 years at diagnosis) are diagnosed with cancer annually. Stuck between pediatric and adult oncology, AYA cancer patients encompass a distinct, understudied and underserved group in cancer care, displaying unmet health and supportive care needs. Based on the needs and input of AYA cancer patients, van der Graaf and Prins started an outpatient clinic for AYA cancer patients in 2009  (with a multidisciplinary team), to address age-specific questions and problems.. In collaboration with Radboudumc REshape Center (now Radboudumc Health Innovation Labs) a secure digital community AYA4 was developed in 2010. The huge success of this program resulted in the establishment of the Dutch AYA ‘Young and Cancer’ Platform in 2013. The goal of this platform is to improve the quality of life (Cancer 2017; J Clin Oncol 2017) and prognosis of AYA cancer patients all over the Netherlands. The platform consists of healthcare professionals from university medical centers and large regional medical centers, AYA cancer patients and their families (www.aya4net.nl). It provides an optimal environment (both virtual and physical) for AYA-specific care, scientific research coordination on ‘cancer at AYA age’, and education about state-of-the-art care for AYA cancer patients. Research in the AYA theme is focused on predictive and prognostic markers (e.g. patient and tumor characteristics, sociodemographics, treatment risk factors, lifestyle) and underlying mechanisms (e.g. biological, physiological, genetics) of health outcomes (health-related quality of life, late effects, survival) and on testing intervention strategies to improve these outcomes among AYA cancer survivors (Support Care Cancer 2018; Eur J Cancer 2018). Husson has done a research fellowship of the Dutch Cancer Society to study the psychosocial and physical problems and needs of AYAs with cancer. As part of this fellowship she collaborated with the team of the University of Michigan School of Social Work, Ann Arbor, MI, (US). Husson is also a member of the EORTC Quality of Life Group for the AYA population. Kaal, AYA medical oncologist, is finishing her PhD thesis on quality of life and quality of care in AYA cancer patients. Since 2014 the annual seminar SPACE 4AYA is being organized for healthcare professionals, patients, and informal caregivers. Important AYA topics at this seminar were: fertility preservation, fatigue, access to clinical trials, return to work and late effects. In 2014 a secure online community was launched for every patient in the Netherlands who has or has had cancer at AYA age. In this digital environment AYA patients can virtually meet each other, exchange information and share emotions. Currently, the AYA researchers are working on a national comprehensive research program in co-creation with patients.