​Current Research

Delphi survey concerning teenagers and young adults with cancer professional and service developments

The aim of this survey is to benchmark the ongoing development of TYA cancer services in the European Union. We aim to share best practice, engage and interest the European TYA cancer community, gather potential further associate members and to map change over time through successive rounds of the survey. The second round of the survey was completed by 115 TYA professionals from across Europe. The survey contained 10 sections focussing on the following issues:

  • Participant demographics (age, country, time in TYA etc.)
  • TYA definitions
  • National TYA guidance
  • TYA Cancer Charter
  • TYA cancer services
  • Integrated working
  • Education and training
  • Research and research priorities
  • User involvement in services and research
  • Research collaboration invitation

The third round of the survey closed on the 20/04/2015 having sought consensus on the data from the previous two rounds. This data is currently under analysis and we hope it will provide vital information on how TYA care is conceptualised across Europe.

Please contact Simon Pini (S.Pini@leeds.ac.uk) for further information.


Pathways to diagnosis

This pilot study is currently open in Leeds, Sheffield, Milan, Budapest and multiple Centres in France, with London and Aarhus due to open in the near future. This study will be assessing the pathways that young people take to their cancer diagnosis after experiencing their first symptom, or visiting their GP for the first time. Patients 13-29 years old will be recruited into the study within the first 60 days of their diagnosis and will provide the details of their GP and main consultant. This study will involve patients, GPs and consultants completing online questionnaires about their perception of the pathway for the patient. The aim of this study is two-fold: firstly, we are interested to see if data of this type can be collected from multiple centres across Europe; secondly, we would like to collect some initial data about the pathways young people take to their diagnosis, which we can use to inform the development of further research in this area.

Please contact Simon Pini (S.Pini@leeds.ac.uk) for further information.

Psychological care in teenagers and young adults with cancer

The Teenage Cancer Trust are currently funding a programme of research (three projects) which aims to develop elements of a new model of direct care from non-psychologist TYA professionals for the distressed TYA with cancer.

Study 1: TYA Distress Study

This study is seeking to validate the Australian adapted Adolescent and Young Adult Oncology Screening Tool (AaAYAOST) for use as a screening tool to detect distress in TYA with cancer in the UK.  This is a multi-centre, prospective, longitudinal project which features an online survey to be completed at four time points within a six month period. This study is open in Leeds Teaching Hospital Trust, The Christie Hospital, Manchester and University College London Hospital.

Study 2: Service Evaluation

The second piece of work was a service evaluation which is now complete. Our objectives were:

  • To define a process from clinical assessment to screening, then to more detailed assessment of screen-positive patients, then to a management plan, which meets the needs of TYA with cancer, is feasible within NHS services and supported by NHS professionals.
  • To define a tool which can support the comprehensive assessment, building upon or complimenting the national approaches to Holistic Needs Assessment

The evaluation featured two stages. Round 1 collected information regarding the psychological assessment of TYA patients who from each TYA service. Each centre was asked to tell us what they do when they see a patient who they know / suspect is experiencing psychological distress?

Round 2 featured a consensus conference which was held 23rd January 2015 and attended by 16 TYA staff from 13 centres across the UK. The aim of the conference was to build an agreed psychosocial pathway for TYA patients.

This work is now complete and a final report is being produced. The report will be sent to each of the participating Trusts. Further discussions regarding implementation and evaluation of a pathway for psychological care of TYA patients are underway.

Study 3: A description of the psychological skills present in non-mental health specialist TYA MDT professionals using qualitative methods

The third study will describe the psychological skills present in non-mental health specialist TYA MDT professionals using qualitative methods. This study is now open in Newcastle and we are in the process of opening further sites in Leeds and Edinburgh.

Please contact Amanda Edmondson (A.J.Edmondson@eeds.ac.uk) for further information.