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Version: 1.0.0 | Published: 21 Jul 2026 | Updated: 50 days ago

EMIRATES: Development and Evaluation of Thyroid Cancer Patient Decision Aid PDA TC

Dataset

Documentation

Description:
A cross-sectional, prospective pilot study to evaluate the effectiveness of a Thyroid Cancer Patient Decision Aid (PDA TC). PDA-TC is an education pamphlet that assists patients with low-risk thyroid cancer in deciding treatment options between active surveillance, thyroid lobectomy (removal of one thyroid lobe that contains the cancer) or total thyroidectomy (removal of both thyroid lobes), by providing information about the treatment options and their outcomes and by clarifying personal values.

Coverage

Spatial:
United Kingdom
Typical Age Range:
18-150
Follow Up:
6 - 12 Months
Pathway:
Potential participants identified from the Thyroid MDT lists at the respective study centres by the local head and neck surgical team (patient"s direct care team). Participants with newly diagnosed low-risk DTC attend two outpatient clinical appointments as part of their standard thyroid cancer care pathway. In the initial consultation, thyroid cancer clinicians discuss with participant the available treatment options (i.e. total thyroidectomy and hemithyroidectomy) for the low-risk DTC and their associated risks and benefits. Participants allowed a week to digest the information and to consider the options. In the PDA arm, the PDA-TC pamphlet introduced to participant after the first outpatient clinical consultation, in the control arm the pamphlet not provided. A week later, participants return for the second outpatient consultation where they decide on the treatment with their clinicians. Participants asked to complete the Decisional Conflict Scale questionnaire after each consultation in both study arms. Participants also complete a Satisfaction with Decision Scale questionnaire and a Preparation for Decision Making Scale questionnaire after the second consultation in both arms.

Provenance

Origin

Purposes:
Study
Sources:
Other
Collection Situations:
Cohort, study, trial

Temporal

Accrual Periodicity:
Static
Start Date:
19 June 2024
End Date:
22 July 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:
Institution-specific restrictions
Resource Creators:
The Royal Marsden NHS Foundation Trust; NIHR Biomedical Research Centre at The Royal Marsden and the ICR

Format and Standards

Vocabulary Encoding Schemes:
LOCAL
Conforms To:
LOCAL
Languages:
en