Establishing a core set of patient-reported outcomes and measures to enhance supportive care for people treated with targeted therapies for advanced renal cell carcinoma or advanced hepatocellular carcinoma

The aims of the project are:

To develop a core set of patient-reported outcomes (PROs) and measures (PROMs) that are of relevance to key stakeholders, i.e. people treated with targeted therapies for advanced RCC or advanced HCC, family members, and treating clinicians.
To explore the level, extent and predictors of impact on core PROs, as measured by core PROMs, in people treated with targeted therapies for advanced RCC or advanced HCC.
This will be a prospective, multinational, mixed-methods study, comprising three consecutive work packages (WP):

WP1: A rapid literature review and multinational online Delphi with strong stakeholder input will be conducted to address the first aim of the project.

WP2: A multinational, cross-sectional survey is currently being undertaken to address the second aim of the project.

WP3: Dissemination of the project’s findings to relevant audiences and stakeholders.

Project timelines: January 2021 – September 2023

Contributors

The project is led by Dr Grigorios Kotronoulas (University of Glasgow, UK).

Co-investigators: Professor Daniel Kelly (University of Cardiff, UK), Dr Wendy Oldenmenger (Erasmus MC, University Medical Center Rotterdam, NL), and Dr Amanda Drury (University College Dublin, IRE).

Celia Díez de los Ríos de la Serna (EONS Research assistant) will support delivery of the project.

Further Study Information

Current Stage: Ongoing
Date: January 2021 - September 2023
Funding source(s): Ipsen Pharma and EISAI


Health Area

Disease Category: Cancer

Disease Name: Advanced renal cell carcinoma, Advanced hepatocellular carcinoma

Target Population

Age Range: 18 - 120

Sex: Either

Nature of Intervention: Drug

Stakeholders Involved

- Charities
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Families
- Patient/ support group representatives
- Researchers
- Service providers
- Service users

Study Type

- COS for clinical trials or clinical research
- COS for practice

Method(s)

- Delphi process
- Survey
- Systematic review

Prospective, observational, multinational and mixed-methods study, comprising three consecutive work packages.

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