A study to develop a quality of life questionnaire for people who have chronic lymphocytic leukaemia, Hodgkin lymphoma or non Hodgkin lymphoma

Cancer type:

Blood cancers

Chronic leukaemia

Chronic lymphocytic leukaemia (CLL)

Hodgkin lymphoma

Leukaemia

Lymphoma

Non-Hodgkin lymphoma

Status:

Results

Phase:

Phase 1

Researchers used interviews to find the most important issues that people with chronic lymphocytic leukaemia, Hodgkin lymphoma or non Hodgkin lymphoma have.

More about this trial

When you have cancer, you might have changes in your body due to the disease and its treatment. This can have an impact on your personal wellbeing and quality of life Open a glossary item .

It is important that your doctor knows about any problems you might have. To do this, doctors often ask how you have been feeling. You may also complete a questionnaire that asks about your quality of life.

The European Organisation for Research and Treatment of Cancer (EORTC) has created some questionnaires for people with cancer. Your doctor might ask you to complete a general questionnaire for anyone who has cancer (EORTC general questionnaire). And a questionnaire that asks about your particular cancer.

But there isn’t a specific questionnaire for people with:

So the EORTC group ran this study to develop a specific questionnaire for people with these cancers. To do this they looked at previous research and talked to people affected by the cancers to find out more about how they feel (physically and emotionally).

The main aim of this study was to develop a questionnaire to help assessing the quality of life of people who have CLL, NHL and Hodgkin lymphoma.

Summary of results

The researchers were able to develop a questionnaire to assess the quality of life of people with CLL, NHL and Hodgkin lymphoma. They hope to continue testing this questionnaire by doing another study with more people.

This was an international study with 3 parts (phases).

Phase 1
In the first phase, researchers looked at previous research and interviewed doctors, clinical nurse specialists and people with CLL, NHL and Hodgkin lymphoma as part of focus groups.

The researchers asked about the issues people thought were important to their quality of life. They found 75 issues such as:

fatigue (tiredness)
problems with taste
hair loss (alopecia)
fear of having an infection
problems with work and education
problems with fertility

Phase 2
The research team interviewed:

80 doctors and clinical nurse specialists
75 people with Hodgkin lymphoma
66 people with high grade NHL
41 people with low grade NHL
63 people with CLL

People were asked about the issues found during phase 1. The study team looked at people’s answers and developed a provisional questionnaire with 39 items (questions).

Phase 3
During this phase, the research team tested the provisional questionnaire.

They asked 337 people from 5 different countries including the UK to have an interview. There were:

67 people with Hodgkin lymphoma
117 people with high grade NHL
67 people with low grade NHL
86 people with CLL

The team looked at what people thought of the questionnaire. They then made some final changes to make the questionnaire more relevant to the specific cancers.

In the end, the team developed a questionnaire with:

27 questions for people with Hodgkin lymphoma
29 questions for people with high grade NHL
20 questions for people with low grade NHL
17 questions for people with CLL

The researchers think the new questionnaire is suitable to be used alongside the EORTC general questionnaire. But they want to continue testing this by doing another study with more people. They hope to start the new study soon.

We have based this summary on information from the research team. As far as we are aware, the information they sent us has not been reviewed independently (peer reviewed Open a glossary item ) or published in a medical journal yet. The figures we quote above were provided by the research team. We have not analysed the data ourselves.