Supportive Care Needs

 

 

Support Needs of Young Brain Tumour Survivors and their Caregivers

 

If you are taking part in the study, please click here https://qtool.leeds.ac.uk/Account/ParticipantLogOn/LTHT to complete the online questionnaire.

 

Project start date: July 2017

Anticipated end date: July 2020

Funding: Ellie’s Fund and Yorkshire Cancer Research

 

Background

The percentage of young people surviving a childhood brain tumour has vastly increased in the last 30 years. Identifying their issues, understanding their needs and recognising what services are required due to the late effects of treatment is critical to improving their quality of life. It is important that needs are accessed separately for teenage and young adult survivors in comparison to children or adults, as systematic review findings suggest that their needs are influenced by unique developmental issues, life milestones, social relationships, and other age-related issues.

 

This research is important as gaining information about caregiver and survivor needs is an important means of redesigning or modifying existing and effective support to better meet survivor needs and if necessary develop new supportive services.

 

Aims and objectives

The aim of the study is to gain an in-depth understanding of the supportive care needs of teenage and young adult childhood brain tumour survivors and their caregivers.

 

Specific objectives of the study include:

1) To describe the met and unmet supportive care needs of TYA survivors of childhood brain tumours and their caregivers.

2) To explore if unmet needs differ between survivor demographic (i.e. sex, age) and clinical data (i.e. tumour type, location and treatment).

3) To determine whether unmet needs are associated with Quality of Life (QoL) outcomes.

4) To explore the role and perceived use of support services in TYA survivors and their caregivers.

 

Study Team:

Emma Nicklin (PhD Student)

Dr Florien Boele (Project Investigator)

Professor Galina Velikova

Professor Claire Hulme

Professor Adam Glaser

Dr Michelle Kwok-Williams

 

For further information about this project please contact Emma Nicklin: ss12ef@leeds.ac.uk