Patterns of unmet needs of adolescents and young adults (AYA) in the developing world: Beyond the walls.
Authors: Papyan Ruzanna , Hovsepyan Shushan , Sargsyan Lilit , Vagharshakyan Lala , Voskanyan Astghik , Bardakhchyan Samvel , Harutyunyan Martin , Mosesyan Iveta , Hakobyan Lusine , Hoveyan Julieta , Danielyan Samvel , Tamamyan Gevorg 
Published: June 2023

e18612

Background: Adolescents and young adults (AYA) with cancer are a special group of patients with unique characteristics. To face the complex clinical, and psycho-social needs of these patients national and international AYA-tailored programs have been developed in various countries (UK, US, Australia, Italy). There is no AYA-dedicated program in Armenia, therefore, all patients above the age of 18 years are seen by various adult oncologists in different hospitals, and clinical management and access to the best possible treatment remain a challenge. Methods: A retrospective review of the medical records of patients (aged 15-25 years) with cancer was conducted, who were treated at Hematology center after Prof. R. H. Yeolyan (adult solid tumor and hematology departments, Pediatric Cancer and Blood Disorders Center of Armenia) between 2019 and 2021. Results: Out of 110 patients 65 were male, with the mean age at admission to the hospital of 18- year-old. The majority of the patients (n = 108, 82%) were from regions. Before starting the treatment, genetic consultation was done only for 5(4.5%) patients, sperm banking was done in 30 patients (46%). All patients had psychosocial support, however, there is no established age-oriented project and regular assessment of AYA’s needs at our center. 11 patients (10%) received part of their diagnosis or treatment abroad, because of unavailability in Armenia. Most common cancer type were lymphomas (n = 41, 37%), from which 35 patients were diagnosed with HL, while 6 had NHL and leukemias (n = 25, 22.7%). The second most common type were sarcomas (n = 18, 16.3%). Carcinomas compromise 16 % of all cases (n = 18), meanwhile CNS tumors were 3.6% of all cases (n = 4). The median diagnostic delay for solid tumors was 90 days, and for hematological diseases 9 days. 19 patients were admitted to ICU department during the treatment and the protocol was changed in 10 cases. Virtual tumor boards with international experts were done for 53(48%) cases, 34(30%) paraffine blocks were sent abroad and the final diagnosis was changed in 13 cases. Treatment abandonment was reported in 10 cases (9%), and the main reason was disbelief in treatment benefits. This rate is comparable with the results reported from other developing countries. At the time of this report 110 patients (84%) were alive. Conclusions: Implementing an AYA-dedicated program in Armenia will be a lynchpin of patient-oriented environment, with the age-appropriate infrastructure, in combination with clinco-psycho-social support. This will reduce abandonment rate, decrease diagnosis delay and will help to overcome emotional detachment and mayhem. Essential aspect will also be active involvement of allied health professionals (fertility preservation, sexual health counseling, genetic specialists counseling, psychosocial team) in the management of AYAs.