A study to find out about treatment side effects

Cancer type:

Blood cancers
Breast cancer
Chronic leukaemia
Chronic myeloid leukaemia (CML)
Soft tissue sarcoma





Researchers wanted to develop a questionnaire to accurately find out about the side effects of targeted drugs Open a glossary item.

The study was open to people with:

More about this trial

To find out about the side effects people had, the team:

  • interviewed people with cancer
  • held focus groups with people with cancer
  • interviewed healthcare professionals

The aim of this study was to develop a questionnaire to accurately reflect the side effects of targeted medicines. They also wanted the questionnaire to find out how people feel during treatment.

The study was open for people to join between 2012 and 2014. The team published the results in 2020 and 2021.

Summary of results

The researchers were able to develop a questionnaire. It accurately found out about the side effects of targeted drugs.

This was an international study run in 16 countries. A total of 316 patients and 86 healthcare professionals took part.

After the interviews and focus groups the team identified 209 side effects. They reduced this to 74 side effects. 

They then tested this set by asking 102 patients from 7 countries to fill in the questionnaire. After this the team reduced it by a further 13 side effects.

The final questionnaire was a set of 61 side effects over 12 different categories. 

The 2 most common side effects reported for these targeted medicines were:

  • lack of energy 
  • tiredness

The team found that the interviews with the patients made the greatest contribution to developing the set.   

The team concluded that they were able to develop a questionnaire. The questionnaire is useful in assessing new targeted treatments and their side effects. 

More detailed information
There is more information about this research in the references below. 

Please note, the information we link to here is not in plain English. It has been written for healthcare professionals and researchers.

Developing Symptom Lists for People with Cancer Treated with Targeted Therapies
Samantha C. Sodergren and others
Targeted Oncology, 2021. Volume 16, issue 1, pages 95-107.

A patient’s perspective on the side effects of tyrosine kinase inhibitors in the treatment of advanced and metastatic gastrointestinal stromal tumors
Deborah van de Wal and others
Future Oncology, 2020. Volume 19, issue 4. 

Where this information comes from    
We have based this summary on the information in the articles above. These have been reviewed by independent specialists peer reviewed Open a glossary item and published in medical journals. We have not analysed the data ourselves. As far as we are aware, the links we list above are active and the articles are free and available to view.

Recruitment start:

Recruitment end:

How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Professor Colin Johnson

Supported by

European Organisation for Research and Treatment of Cancer (EORTC)
EORTC Quality of Life Group
NIHR Clinical Research Network: Cancer
University Hospital Southampton NHS Foundation Trust 

If you have questions about the trial please contact our cancer information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

Oracle 9537

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Last reviewed:

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