The psychological consequences of adult-onset craniopharyngioma (V1)
Research type
Research Study
Full title
Understanding the psychological consequences of living with adult-onset craniopharyngioma
IRAS ID
290153
Contact name
Katie Daughters
Contact email
Sponsor organisation
University of Essex
Duration of Study in the UK
0 years, 11 months, 3 days
Research summary
Understanding the psychological consequences of living with adult-onset craniopharyngioma
It is known that patients with childhood-onset craniopharyngioma perform poorly on quality of life measures. Relatively little research, however, has investigated quality of life outcomes for patients with adult-onset craniopharyngiomas (AOC), and these studies have used self-report measures or medical data as indices of quality of life that do not adequately capture the nuance of psychological wellbeing and social functioning. The aim of the proposed research is to clearly define the impact of AOC on patient’s social functioning, and in turn, their quality of life.
This project will conduct in-depth interviews with both patients and clinicians to document how a diagnosis of AOC affects their own/patients’ social functioning and psychological wellbeing. The Chief Investigator will conduct one-hour interviews with 20 patients and 20 clinicians. Patients between the ages of 18-65 with a diagnosis of AOC; and clinicians with a minimum of 2 years clinical experience will be invited to take part via a study advert sent through five specialist units around the UK (Cardiff, Barts, Oxford, Sheffield and Birmingham). Each unit has an active interest in craniopharyngiomas and has agreed to provide support to the study. The data will be analysed in order to identify important common themes. To ensure data collection can continue despite dynamic COVID-19 guidelines all interviews will be first offered to be conducted online (e.g., via Zoom). As such this project will provide essential information about the impact of AOC on patients’ social functioning and psychological wellbeing.REC name
Wales REC 2
REC reference
21/WA/0079
Date of REC Opinion
29 Mar 2021
REC opinion
Further Information Favourable Opinion