Qualitative study: experiences of AYACs during the COVID-19 pandemic 1
Research type
Research Study
Full title
A qualitative study of the experiences of adolescents and young adults with cancer (AYACs) during the COVID-19 pandemic.
IRAS ID
299972
Contact name
Helen Hatcher
Contact email
Sponsor organisation
Cambridge University Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 0 days
Research summary
The COVID-19 pandemic led to widespread disruption of all aspects of life in the UK due to national lockdowns between March 2020 – March 2021. Provision of healthcare needed to be restructured to ensure that it could meet the demands placed on it by the increasing number of COVID cases and hospitalisations. This study aims to look at the effect that the pandemic had on Adolescents and Young Adults with Cancer (AYACs).
There are 2490 new cases of cancer within the AYA category (aged 16-25) per year in the UK, and although this only represents 1% of the cases diagnosed in the UK each year, this is an important patient group that had previously fallen between the gap of paediatric and adult oncology with inadequate care provided by either setting. NICE guidance was updated in 2005 to include AYA specialist care in order to improve outcomes. In the UK, 13 specialist centres oversee the majority of these patients’ management. The UK AYA services integrates medical management of these patients, with specialist wards and social workers, youth support and counsellors to provide a more targeted, holistic approach. Due to the COVID-19 pandemic, the provision of these specialist services was drastically limited.
A diagnosis of cancer in the AYA age group is associated with a loss of independence for the patient due to the disruption that a diagnosis causes to the normal transition into adulthood. We expect to explore the effects of the further disruption to AYACs’ lives due to the pandemic.
Although insufficient time has passed to explore the long term effects of the pandemic, given the good survival rates in this population (84%), long term management is important. Hopefully, themes highlighted in this study will uncover the specific challenges this patient group faced and help healthcare professionals anticipate long-term effects.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
21/SC/0409
Date of REC Opinion
23 Dec 2021
REC opinion
Favourable Opinion