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EORTC Metastatic Breast Cancer Module Development

This study aims to create a new, easy-to-use questionnaire designed specifically for women living with breast cancer that has spread (metastatic breast cancer). At the moment, there isn't a perfect way to fully understand how this condition affects a woman's daily life and wellbeing. This new tool will help doctors and researchers get a clearer picture of patients' quality of life, including their physical and emotional experiences. By doing this, they hope to improve the support and care offered. The questionnaire will be developed with direct input from patients across Europe to ensure it accurately reflects their experiences.

At a glance

Status
Recruiting
Sponsor
University of Leeds
Enrolment target
568
Start
01 May 2020
Estimated completion
31 May 2029

What is this study about?

When breast cancer spreads to other parts of the body, it's called metastatic breast cancer. Living with this condition can bring many challenges, both physically and emotionally, and it can significantly impact a person's quality of life. At the moment, there isn't a specific tool that fully captures all these experiences in a comprehensive way.

This project aims to fill that gap by developing a brand new questionnaire. This questionnaire will help healthcare teams and researchers better understand how treatments and the condition itself affect women's daily lives. It will cover various aspects, such as physical symptoms, emotional wellbeing, social life, and how able patients are to do everyday activities. By having a clearer picture of these experiences, doctors can offer more tailored support and care.

The development of this questionnaire will involve speaking directly with women who have metastatic breast cancer from different hospitals across Europe. Their experiences and feedback will be key to making sure the new questionnaire truly reflects what matters most to patients. This new tool will be used alongside an existing questionnaire to give an even more detailed understanding of quality of life.

Key takeaways

  • This study aims to create a new questionnaire for women with metastatic breast cancer.
  • The goal is to better understand patients' daily experiences and quality of life.
  • Your input through interviews will directly help develop this important tool.
  • Participation will not involve new treatments or change your current medical care.
  • This research could improve future support and care for women like you.

Who may be eligible?

This study is looking for women aged 18 or over who have been diagnosed with breast cancer that has spread to other parts of the body. This includes women who are newly diagnosed with metastatic breast cancer, and those whose cancer has returned and spread. Even if the cancer has spread to the brain, you might still be able to join, as long as it hasn't caused major problems with your thinking or memory.

You should either be currently receiving treatment for metastatic breast cancer, or have received treatment in the past and are now being monitored. The type of treatment doesn't usually matter, so this could include chemotherapy, hormone therapy, targeted drugs, radiotherapy, or a combination of these.

To take part, you need to be able to understand and speak the language the questionnaire is given in, and be able to provide your agreement to participate. You won't be able to join if you have very early-stage breast cancer, or if your doctor believes a mental health condition or memory problem would make it difficult for you to take part in interviews.

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.

  1. Are you 18 years old or older?
  2. Do you have breast cancer that has spread to other parts of your body?
  3. Are you currently receiving treatment for metastatic breast cancer, or have you recently been treated?
  4. Can you understand and speak the language used for the questionnaire?
  5. Do you feel comfortable talking about your health and experiences in an interview?
Answer every question to see your result.

What does participation involve?

If you join this study, your involvement will primarily be through interviews. These interviews are designed to help researchers understand your experiences and feelings about living with metastatic breast cancer. This information will then be used to create the new questionnaire. The study focuses on gathering your insights rather than testing new treatments. Therefore, there are no specific medications, visits to clinics for treatments, or long-term follow-up appointments directly related to the study itself. You will continue with your usual medical care as planned by your healthcare team. The exact number and length of interviews will be explained to you fully before you decide to take part.

Potential risks and benefits

A potential benefit of taking part is contributing to a tool that could improve how healthcare professionals understand and support women with metastatic breast cancer in the future. Sharing your experiences could help many others. There are very few direct risks; you might find some questions about your health and feelings to be sensitive, but you won't be asked to do anything that could harm your health. Remember, your participation is completely voluntary, and you can change your mind and stop taking part at any time without affecting your medical care.

Locations (22)

  • Ghent University Hospital
    Verified postcode
    Ghent, Belgium· Not yet recruiting
  • Centre hospitalier de l'Université de Montreal
    Verified postcode
    Montreal, Canada· Not yet recruiting
  • Odette Cancer Center - Sunnybrook Health Sciences Center
    Verified postcode
    Toronto, Canada· Recruiting
  • Centre Hospitalier Lyon Sud
    Verified postcode
    Lyon, France· Recruiting
  • University Hospital of Nimes
    Verified postcode
    Nîmes, France· Not yet recruiting
  • Centre Hospitalier Universitaire de Saint-Etienne
    Verified postcode
    Saint-Etienne, France· Not yet recruiting
  • Charité - Universitätsmedizin
    Verified postcode
    Berlin, Germany· Not yet recruiting
  • Helios University Hospital
    Verified postcode
    Wuppertal, Germany· Recruiting
  • Tata Memorial Hospital
    Verified postcode
    Mumbai, India· Not yet recruiting
  • Istituto Nazionale Tumori
    Verified postcode
    Naples, Italy· Recruiting
  • Veneto Institute of Oncology
    Verified postcode
    Padova, Italy· Not yet recruiting
  • Kansai Medical University Hospital
    Verified postcode
    Osaka, Japan· Recruiting

Common questions

What is 'quality of life' in this study?

It means how well you feel and function in your daily life, including your physical health, emotional wellbeing, and social activities.

Will this study give me a new treatment?

No, this study is about developing a questionnaire, not testing new treatments. You will continue with your usual medical care.

How long will my involvement last?

The study involves interviews. The exact number and length of these will be explained to you before you agree to take part.

Do I have to speak English to take part?

You need to be able to understand and speak the language the questionnaire is given in, which might be English or another European language depending on the centre.

What if I decide I don't want to continue?

You can withdraw from the study at any time, for any reason, without it affecting your medical care or relationship with your healthcare team.

How to find out more

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

Interested in taking part?

Register your interest

Share your details and the research team for "EORTC Metastatic Breast Cancer Module Development…" will contact you if you may be eligible. Always speak to your GP before agreeing to take part.

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