Version: 1.0.0 | Published: 31 Aug 2026 | Updated: 55 days ago
Documentation
Description:
This study aimed to characterise the impact of radiotherapy on physical symptoms and quality of life in childhood and young adult cancer survivors.
This is in line with current NHS strategic priorities and an unmet clinical need to optimise aftercare in this patient group.
In order to provide effective treatment strategies, the scale and impact of symptom burden requires better characterisation. A significant proportion of adult patients suffer with gastrointestinal and urinary symptoms and sexual dysfunction following radiotherapy treatment. However there is a lack of data in the paediatric and young adult population.
By capturing data through electronic questionnaires (including relevant extracts from existing validated questionnaires), along with corresponding treatment and patient related factors extracted from patient hospital records this study provides novel data on the frequency and severity of gastrointestinal and bladder related radiotherapy toxicity in young adult cancer survivors and assess impact on sexual function and quality of life. The qualitative sub-study used one-to-one interviews to gain a better insight into symptom burden, quality of life, patient perceptions of current services and view of currently unmet needs.
We plan to use this data to focus on service improvements within the regional paediatric and TYA cancer aftercare service driven by patient experience and clinical need.
Coverage
Spatial:
United Kingdom
Typical Age Range:
2-24
Follow Up:
Other
Pathway:
We identified patients from The Royal Marsden Hospital, Great Ormond St Hospital
and University College Hospital, who underwent abdomino-pelvic radiotherapy, who
completed treatment between 2000 and 2021 and were under the age of 24 years at
the time of treatment. An electronic questionnaire, including relevant extracts
from existing validated questionnaires, was used to to prospectively assess
severity of ongoing symptoms. Meanwhile treatment and patient related factors
were extracted from patient hospital records. Three participants additionally
took part in a qualitative sub-study using one-to-one interviews to further
explore symptom burden and quality of life, plus their perceptions of current
services and unmet needs.
Provenance
Origin
Purposes:
Study
Sources:
Other
Collection Situations:
Cohort, study, trial
Temporal
Accrual Periodicity:
Static
Start Date:
19 October 2023
End Date:
12 May 2025
Time Lag:
Not applicable
Accessibility
Access
Access Rights:
in progress
Access Service:
Although not required, there is an option to use The Royal Marsden’s Trusted
Research Environment and informatics platform: BRIDgE (Biomedical Research
Informatics Digital Environment). BRIDgE is managed by The Royal Marsden’s
Information Team with support by the NIHR Biomedical Research Centre at The
Royal Marsden and ICR. The aim of the platform is to transform clinical practice
and improve outcomes for patients by enabling researchers to access real-world
cancer data within secure, collaborative, cloud-based workspaces. Learn more by
visiting the BRIDgE site within the NIHR BRC area of The Royal Marsden and ICR
website: https://www.cancerbrc.org/BRIDgE
Access Request Cost:
Depends on type of access. Costing available on application.
Delivery Lead Time:
Variable
Jurisdictions:
UK
Data Controller:
Royal Marsden NHS Foundation Trust
Data Processor:
Royal Marsden NHS Foundation Trust
Usage
Data Use Limitations:
Research-specific restrictions
Data Use Requirements:
- Ethics approval required
- Institution-specific restrictions
- User-specific restriction
- Not for profit use
Resource Creators:
The Royal Marsden NHS Foundation Trust; The Royal Marsden Cancer Charity; NIHR Biomedical Research Centre at The Royal Marsden and the ICR
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Conforms To:
LOCAL
Languages:
en
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Participants from three hospitals. "Observation date" is date of study closure, actual recruitment was over two year period.
Qualitative sub-study had 3 participants.
71
12 May 2025