Not yet recruitingOBSERVATIONAL

Validation of the European Oncology Quality of Life Toolkit

This study is about checking a new set of surveys, called the European Oncology Quality of Life Toolkit (EUonQoL-Kit), which aims to understand the quality of life for people living with cancer. This toolkit has three electronic questionnaires designed for different stages: those currently having treatment, those who have finished treatment, and those receiving palliative care. It's being tested in 45 cancer centers across Europe with thousands of patients. The main aim is to make sure these surveys are reliable and accurately measure what they're supposed to. They also want to see how easy they are to use and compare them with other surveys. The overall goal is to improve how we understand and support cancer patients' well-being across Europe.

At a glance

Status

Not yet recruiting

Sponsor

Fondazione IRCCS Istituto Nazionale dei Tumori, Milano

Enrolment target

4,000

Start

31 Aug 2024

Estimated completion

31 Oct 2024

Cancer Survivorship Palliative Care

What is this study about?

This study aims to test a new set of online questionnaires known as the European Oncology Quality of Life Toolkit (EUonQoL-Kit). This toolkit was created to help better understand the quality of life for people affected by cancer, from the time they are diagnosed, through their treatment, beyond treatment as survivors, and for those receiving palliative care. Currently, there isn't a comprehensive tool that truly reflects the experiences of patients across different stages of cancer and can be used widely throughout Europe.

The EUonQoL-Kit was developed with input from people who have had cancer themselves, to make sure it includes the things that matter most to them. It comes in three different versions, each designed for a specific group: patients going through active treatment, cancer survivors, and patients receiving palliative care. These questionnaires are available in many European languages and can be completed online.

Over 4,000 patients from 45 cancer centers across 33 European countries will take part in this study. By collecting information from such a large and varied group, researchers want to make sure the EUonQoL-Kit is accurate, reliable, and easy for people to use. The study also aims to compare the new surveys with some existing ones and gather information on quality of life across different European countries.

Key takeaways

This study is testing new online surveys about quality of life for cancer patients.
The surveys are for patients in active treatment, survivors, and those in palliative care.
It aims to create a better tool for understanding patient well-being across Europe.
Participation involves completing online questionnaires, with no new medicines or appointments.
Your input could help improve support for future cancer patients.
You can stop participating at any time.

Who may be eligible?

To join this study, you need to be 18 years old or older and have a confirmed diagnosis of cancer, which means it's been identified by doctors. You also need to be in one of three groups: currently receiving active cancer treatment, considered a cancer survivor (meaning you've completed active treatment), or receiving palliative care.

It's important that you can understand the questionnaire, either in your native language or if you're fluent in the language it's offered in. You'll also need to provide written permission for your information to be used in the study.

However, you won't be able to take part if you have any memory or thinking problems that would make it difficult for you to complete the questionnaire accurately. The researchers want to make sure everyone who participates can give clear and reliable answers.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you have a confirmed cancer diagnosis (past or present)?
Are you currently receiving active cancer treatment, are a cancer survivor, or in palliative care?
Can you read and understand the questionnaire in its given language?
Can you give written permission to take part?
Do you feel able to complete a questionnaire without difficulty?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you will be asked to complete one of the EUonQoL-Kit online questionnaires. The specific questionnaire you receive will depend on whether you are currently in active treatment, are a survivor, or are receiving palliative care. Some participants, about 10% from each center, will fill out a few extra questionnaires. This might include other well-known quality of life surveys like the FACT-G and EQ-5D-5L, or in some cases, you might be asked to complete the EUonQoL-Kit again about an hour after your first attempt. The purpose of these extra questionnaires is to help researchers check the accuracy and reliability of the new toolkit. All questionnaires are administered digitally, which means you'll likely complete them on a computer or tablet. You won't need to take any new medications as part of this study, nor will there be any additional clinic visits beyond your usual care. The total time commitment for filling out the questionnaire(s) is expected to be relatively short, likely less than an hour in total.

Potential risks and benefits

Participating in this study involves very low risk, as you will only be asked to complete questionnaires and will not receive any new treatments or interventions. Some people might find thinking about their quality of life upsetting or tiring, but you can take breaks if needed. A potential benefit is that your responses will help develop a better tool for understanding and supporting the well-being of future cancer patients across Europe. You have the right to withdraw from the study at any time without giving a reason, and this will not affect your medical care.

Locations (45)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Mother Teresa University Hospital
Verified postcode
Tirana, Albania
Comprehensive Cancer Center
Verified postcode
Vienna, Austria
Kortrijk Kankercentrum AZ Groeninge
Verified postcode
Kortrijk, Belgium
Bulgarian Joint Cancer Network
Verified postcode
Varna, Bulgaria
Klinika za tumore Klinički bolnički centar Sestre milosrdnice
Verified postcode
Zagreb, Croatia
Cyprus Association of Cancer Patients and Friends (PASYKAF)
Verified postcode
Nicosia, Cyprus
Masarykův onkologický ústav
Verified postcode
Brno, Czechia
Region Hovedstaden (Rigshospitalet)
Verified postcode
Hillerød, Denmark
North Estonia Medical Centre
Verified postcode
Tallinn, Estonia
Sihtasutus Tartu Ülikooli Kliinikum
Verified postcode
Tartu, Estonia
HUS Syöpäkeskus Helsingin Yliopistollinen Sairaala
Verified postcode
Helsinki, Finland
lnstitut de Cancérologie de l'Ouest (ICO)
Verified postcode
Angers, France

Common questions

What is the EUonQoL-Kit?

It's a new set of online surveys designed to measure the quality of life for people with cancer at different stages.

Who created these surveys?

They were developed with input from people who have experienced cancer, to make sure they ask about important things.

Why is this study being done?

To make sure the new surveys are accurate, reliable, and easy to use for cancer patients across Europe.

Will I have to take new medicine or have extra appointments?

No, this study only involves completing questionnaires; there are no medicines or extra clinic visits.

Can I stop participating if I change my mind?

Yes, you can withdraw from the study at any time without it affecting your cancer care.

How to find out more

Cinzia Brunelli, PhD

cinzia.brunelli@istitutotumori.mi.it 00390223903387 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.