A Europe-wide provider perspective of healthcare services for adolescent and young adult patients with haematological conditions: a survey from the Adolescent and Young Adult Taskforce of the European Hematology Association

Abstract

BACKGROUND: Adolescent and young adult (AYA) patients are a unique group at a crucial phase of physical, emotional, and social development. In terms of healthcare provision, the specific needs of AYAs are not optimally catered for by healthcare services designed to meet the needs of younger children or older adults. Although most of the advocacy for AYAs has been driven by medical oncology, within haematology the needs of AYA patients with both malignant and non-malignant, chronic diagnoses must be considered. METHODS: The AYA Taskforce of the European Hematology Association (EHA) developed an online survey and distributed this to European healthcare providers, aiming to scope the existing pan-European landscape of AYA haematology service provision, identify barriers and facilitators to effective AYA care delivery, and inform the development of a strategic agenda for AYA within the organisation. Survey targeted the EHA membership, including a diverse range of clinical and academic professionals, as well as additional relevant organisations representing haematology nursing and allied health professionals. FINDINGS: With 1490 respondents from diverse institutions across 43 European countries we obtained a pan-European overview of access to age-relevant care for AYA patients with haematological conditions. Survey responses articulate a non-uniform picture of whether, and how, AYA is defined for the purposes of structuring healthcare, and a varied provider perception of access to quality, age-relevant support for young people. Differences in age-appropriate provision for AYAs with malignant and non-malignant chronic haematological conditions, as well as the level of support offered to AYA patients for transition across the age-boundaries of existing healthcare infrastructure are highlighted. As particular challenges to providing optimal support for young people. INTERPRETATION: This survey illustrates a heterogeneous recognition and provision of service need for AYA patients across Europe, with varied perception of quality of existing age-relevant services. Pan-European inequity in approaches for AYA patients with malignant versus chronic, non-malignant conditions poses a challenge that is relatively unique to the specialism of haematology and falls out of scope of previous advocacy initiatives for AYA patients primarily driven by the field of solid oncology. The paucity of available structured transition programs for AYAs with haematology conditions falls short of ensuring that this patient group are equipped with the necessary informational, psychological and social support infrastructure to promote effective engagement, ownership and management of individual healthcare need as patients move into older adulthood. An ambitious AYA strategy is required to address these and other key observations. FUNDING: None.