Study seeks people newly diagnosed with diffuse large B-cell lymphoma

UK study researching impact of cancer on daily life across the UK.

Papers

HORIZONS is a large study of people across the UK who have had a diagnosis of cancer. They are seeking people who have been newly diagnosed with diffuse large B-cell lymphoma, as well as other types of cancer. Being part of this study does not change what treatment you have. The researchers need people to complete questionnaires about their health and wellbeing for research.

The HORIZONS programme is led by the Macmillan Survivorship Research Group in the School of Health Sciences, University of Southampton. It had been designed to improve understanding of the impact of cancer and its treatment on people's lives.

What does the research involve?

The HORIZONS study is recruiting people newly diagnosed with high-grade B-cell non-Hodgkin lymphoma from 110 hospitals across the UK. Those invited to take part are waiting for curative cancer treatment. The study wants to involve as many people with this type of cancer as possible. Recruitment started in September 2016 and will finish at the end of March 2019, so there isn't long to go. They are aiming to include 750 people and so far 653 have agreed to take part.

People who agree to take part in HORIZONS complete a questionnaire before they start cancer treatment and then at regular intervals afterwards. The study will collect information from medical records including details of diagnosis, treatments and follow-up care.They are trying to find out as much as possible about how the diagnosis and treatment of high-grade B-cell NHL affects various aspects of daily life and what might help or make things worse. The HORIZONS questionnaires are quite long; the study asks questions about how people are doing in terms of their health, wellbeing and quality of life, how confident they are to manage their health, how supported they feel, and what use of health services they have made.

What other studies like this have found out

The Macmillan Survivorship Research Group (MSRG) at the University of Southampton is running the HORIZONS study. An earlier MSRG study, called CREW, recruited people newly diagnosed with bowel cancer and followed them up for 5 years. In a similar way to HORIZONS, study participants completed several questionnaires and medical information was collected from their patient records.

The CREW study has shown that around seven out of 10 people (70%) recover well after treatment for bowel cancer in terms of their health and wellbeing. However, around three out of 10 (30%) do not do as well and this is still the case five years after treatment.

The CREW study also found that people who are feeling depressed at diagnosis or who lack confidence to manage illness related problems are less likely to report feeling well or have good quality of life up to 5 years later. The CREW study highlighted the importance of identifying people who don’t feel confident to manage or are feeling depressed and offering them help and support soon after bowel cancer diagnosis; with the right support they can improve.

The study also found that people who already had other conditions such as arthritis, anxiety or depression, as well as bowel cancer, may need additional support where these conditions are limiting their daily activities.

What does this mean for people with high-grade B-cell NHL?

The HORIZONS study will produce a wealth of data on the experiences of a large, representative group of people with newly diagnosed high-grade B-cell NHL. Little research on the impact of high-grade B-cell NHL and its treatment on daily life and the challenges faced over time has been done before and HORIZONS hopes to fill this gap. 

Questionnaire data will help them understand how people recover following treatment, what challenges they face, who is most likely to need support and what support in required. This includes the long-term consequences - HORIZONS will last several years, allowing them to monitor the impact of long term side effects on people’s lives, as well as short-term impacts.   

People will share what happens in their everyday lives after a cancer diagnosis and what matters a lot. By focussing on understanding how high-grade B-cell NHL affects people's everyday lives, the HORIZONS study will lead to the development of improved, individualised support for this group. 

Find out more about the HORIZONS study, and other clinical trials on Lymphoma Action TrialsLink.

News article posted on 4 March 2019