The care of adolescents and young adults with cancer: results of the ESMO/SIOPE survey

Abstract

Introduction: Adolescents and young adults (AYA) with cancer require dedicated clinical management and care. Little is known about the training and practice of European healthcare providers in regard to AYA and the availability of specialised services.

Methods: A link to an online survey was sent to members of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). The link was also sent to ESMO National Representatives and circulated to other European oncology groups. Questions covered the demographics and clinical training of respondents, their definition of AYA, education about AYA cancer, access to specialised clinical and supportive care, research and further education. Data from Europe were analysed by region.

Results: Three hundred tweenty two questionnaires were submitted and we focused on data from the 266 European healthcare professionals. Responses revealed considerable variation both within and between countries in the definition of AYA. Over two-thirds of respondents did not have access to specialised centres for AYA (67%), were not aware of research initiatives focusing on AYA with cancer (69%) and had no access to specialist services for managing the late effects of treatment (67%). The majority of the respondents were able to refer AYA patients to professional psychological support and specialised social workers. However, more than half had no access to an age-specialised nurse or specialised AYA education. Overall, 38% of respondents reported that their AYA patients did not have access to fertility specialists. This figure was 76% in Eastern Europe. Lack of specialised AYA care was particularly evident in Eastern and South-Eastern Europe.

Conclusion: There is important underprovision and inequity of AYA cancer care across Europe. Improving education and research focused on AYA cancer care should be a priority.

Keywords: cancer In adolescents and young adults; cancer care; professional education.

Figure 1

European survey respondents by region. Region respondents, n (%): Eastern Europe 35 (13.2), Northern Europe 49 (18.4), Southern Europe 85 (32.0), Western Europe 97 (36.6), TT 266 (100). Eastern Europe: Belarus (n=2), Bulgaria (n=2), Czech Republic (n=3), Georgia (n=1), Hungary (n=3), Poland (n=5), Romania (n=8), Russia (n=5), Slovakia (n=3), Ukraine (n=3). Northern Europe: Denmark (n=5), Estonia (n=2), Finland (n=1), Iceland (n=1), Ireland (n=5), Latvia (n=2), Lithuania (n=4), Norway (n=1), Sweden (n=4), UK (n=24). Southern Europe: Albania (n=2), Andorra (n=1), Bosnia and Herzegovina (n=1), Croatia (n=6), Cyprus (n=3), Greece (n=27), Italy (n=15), Malta (n=2), Montenegro (n=1), Portugal (n=11), Serbia (n=3), Slovenia (n=2), Spain (n=9), (Former Yugoslavic Republic of) Macedonia (n=2). Western Europe: Austria (n=2), Belgium (n=13), France (n=26), Germany (n=37), Luxembourg (n=1), Netherlands (n=9), Switzerland (n=9).

Figure 2

Awareness of respondents about the availability or development of specialised services for AYA where adult and paediatric cancer specialists work together to plan treatment and deliver care.

Figure 3

Availability of a fertility specialist providing consultation to adolescents and young adults willing to have children after their cancer treatment at respondent’s institution.