Welcome

Action Kidney Cancer is involved with this research project for people with localised kidney cancer. The project is led by Dr Steven MacLennan from the University of Aberdeen and a panel of clinicians and researchers from across Europe.

The aim of this project is to use a survey to find out what effects of treatment are important outcomes for kidney cancer patients and the healthcare professionals who care for them. Your opinion and experience are very important in helping to achieve this.

It is very important that patients are able to give their opinions on these outcomes, because what is considered to be important to clinicians and researchers can be very different to what patients consider to be important in terms of their quality of life.

The information and opinions you share in this survey will tell the researchers which outcomes should be measured when studying kidney cancer. When this project is finished, the core outcome set will be shared with other researchers nationally and internationally. This will improve how research is carried out and how treatments for kidney cancer are evaluated.

Below is some more information about the project.

If you are interested in taking part in the survey, please click on this link: Localised renal cell cancer core outcome set or on the image on the right.

Information for patients

What is the purpose of this project?

The aim of this project is to develop a core outcome set for localised renal cell cancer (also known as kidney cancer).

What is an outcome?

An outcome is a measurement or observation used to capture and assess the effect of treatment. It includes the assessment of side effects, or risks, and effectiveness, or benefits.

What is a core outcome set?

A core outcome set (COS) is a minimum set of outcomes that should be collected in research about how effective a treatment is. Researchers may also wish to include other outcomes in their research, but the core outcome set should always be included.

What is involved in participating in this survey?

In this survey, you will be shown a list of outcomes (i.e., effects of kidney cancer treatment). You will be asked to rate the outcomes and tell us if you think they are important, by rating them on a scale. It doesn’t matter if you haven’t experienced the outcomes. We are still interested in your opinion as a kidney cancer patient.

What is the purpose of this survey – also known as a ‘Delphi study’?

The aim of this survey is to find out what effects of treatment are important outcomes for kidney cancer patients and the health care professionals who care for those with kidney cancer. Your opinion and experience are very important in helping us achieve this. In this study, you will be asked to complete a survey twice.

This is the first survey (round 1). In a few weeks we will send out round 2. In round 2, you will be reminded of the ratings you provided for each outcome in round 1. You will also be told how other participants rated the outcomes. You will then need to rate the outcomes again. You can change your mind or give the same rating as you give in round 1. Don’t worry about remembering these instructions, you will be reminded of what you need to do before you complete round 2.

How will information from this survey be used?

The information and opinions you share with us in this survey will tell us which outcomes should be measured by researchers studying kidney cancer. When this project is finished, the core outcome set will be shared with other researchers nationally and internationally. This will improve how research is carried out and how treatments for kidney cancer are evaluated.

The R-COS Project Team

Steven MacLennan, Lisa M. Winter, Katharina Beyer, Ailbhe Lawlor, Sheela Tripathee, Saeed Dabestani, Lorenzo Marconi, Rose Woodward, Mieke Van Hemelrijck, Axel Bex, Patricia Zondervan.

Any Questions/Queries

If you have any questions regarding this research, please do not hesitate to email us or contact Ailbhe Lawlor, Research Assistant (ailbhe.lawlor@kcl.ac.uk).