PhD defence E.K. (Emma) Lidington

Summary:

Adolescents and young adults (AYAs) with cancer ages 15-39 face unique medical, practical and psychosocial issues. In the United Kingdom, principal treatment centres and programmes have been designed to care for teenagers and young adult (TYA) patients aged 13-24 in an age-appropriate manner. However, for young adults (YAs) with cancer aged 25-39, little access to age-specific support is available. This thesis examines this possible gap by investigating YA care experiences and supportive care needs in a mixed methods programme of research.

We recruited YA patients diagnosed with any type of cancer between the ages of 25 and 39 in the last five years from six hospitals in Southeast England. These included 4 hospitals in London (Royal Marsden Hospital NHS Foundation Trust, Barts Health NHS Trust, Imperial College Healthcare NHS Trust,and East and North Hertfordshire NHS Trust) , the East Suffolk and North Essex NHS Foundation Trust in Ipswich, and the University Hospital Southampton NHS Foundation Trust in Southampton.We conducted qualitative interviews and focus groups to explore the psychosocial, practical and care experiences of YAs in-depth. This allowed us to examine issues not included in relevant questionnaires designed for older adults. We also conducted a cross-sectional survey measuring the diagnostic interval, supportive care needs and health-related quality of life of a more representative sample of patients. Patients were eligible if they were and were under the care of one of the participating centres. Clinical teams invited potential participants to the qualitative work in clinic between November 2017 and August 2018. We recruited a convenience sample with a view to including a range of tumour types across sites. Clinical teams invited potential participants to the qualitative part of the project by sending a survey by post between May 2018 and October 2019.

For the qualitative part of this study 152 patients were invited. Sixty five (42.8%) patients participated, 50 (76.9%) in individual interviews and 15 (23.1%) in five focus groups. For the quantitative part 1657 patients were invited and 347 completed the questionnaire (response rate 21%).