Life and Bladder Cancer (LABC)

Life and Bladder Cancer: The Yorkshire Cancer Research Bladder Cancer Patient Reported Outcomes (PROMs) Survey.

Smoke billowing out of chimney in power plant

On

The Life and Bladder Cancer (LABC) study is now closed.

What is the study about?

Funded by Yorkshire Cancer Research, the Life and Bladder Cancer (LABC) survey is a project hoping to improve the quality of life of people with bladder cancer.

The study is run by a research team based at the Universities of Sheffield and Leeds. It involves people who have been diagnosed with bladder cancer in the Yorkshire, North Derbyshire, Humber and South Tees region. Nearly 2,000 people are diagnosed in this region each year.

We want to know what it is like to live with and after bladder cancer so we can help future people with this disease. We know quite a bit about what treatments people have and how they respond to them but, we know less about the impact of these treatments on life at home and work, relationships and emotions.

To find out more, we asked people to complete some questionnaires. This information will help us understand what areas of care patients need and how we can improve their care. The findings of the study will be used to evaluate hospital services and to help guide future changes.

What we did

To get a picture of quality of life for people living with or after bladder cancer, the LABC study had two different surveys for different groups of people:

My First Year: a survey of people newly diagnosed with bladder cancer

We will find out what life is like for patients just after their diagnosis and over the next year. We asked them to complete 4 questionnaires over 12 months and will look at how thing changed over this year.

The survey was sent out between March 2019 and March 2020.

Snapshot: a survey of people diagnosed with bladder cancer in the last 10 years

This was a single questionnaire for people diagnosed with bladder cancer in the last 10 years. We want to find out more about the long-term quality of life of people who have been diagnosed with and treated for bladder cancer. To find out more about this survey and how it was possible to opt out, click here:

The survey was sent out between November 2018 and June 2019.

These questionnaires will help us understand what matters most to patients and how we can improve their care. All opinions are important. We wanted to hear from you whatever your age, if you are male or female, whatever type of bladder cancer and treatment you had, whether you have symptoms or not, and regardless of other medical conditions. We wanted to hear from you whether you found your care to be excellent, average or poor.

The LABC study has ethical approval and we identified 15 NHS hospital sites within the Yorkshire, North Derbyshire, Humber and South Tees region.

There is a summary of the study on the Cancer Research UK trials database.

Black and white period image of men working in factory

Who is involved?

Chief Investigators

Professor James Catto, University of Sheffield
Professor Adam Glaser, University of Leeds

Research Team Members

Sarah Bottomley, University of Sheffield
Dr Amy Downing, University of Leeds
Dr Kate Absolom, University of Leeds
Dr Ibrahim Jubber, University of Sheffield
Ms Zoe Rogers, University of Leeds
Dr Luke Hounsome, National Cancer Registration & Analysis Service, Public Health England
Dr Victoria Coupland, National Cancer Registration & Analysis Service, Public Health England
Professor Julia Verne, Knowledge & Intelligence, Public Health England

Former Research Team Members

Samantha Mason, University of Leeds
Dr Penny Wright, University of Leeds

Study endorsements

Publications

Featured publications

Quality of Life After Bladder Cancer: A Cross-sectional Survey of Patient-reported Outcomes - Lay summary of findings

Catto JWF et al, Eur Urol. 2021 (IF 18.7) 

Bladder cancer is one of the commonest human cancers. However, little is known about the quality of life when living with and beyond this cancer. To determine this, we undertook a cross-sectional survey covering 10% of the English population.

We identified participants 1-10 years after their diagnosis using national cancer registration data. A postal survey was administered containing generic health-related quality of life and bladder cancer specific questions. Findings were compared with the general population and other pelvic cancers.

In total 1,796 surveys were completed for the 3,279 invited participants. Most participants were men (77%) and the average age was 75 yrs old. Completion rates were high and allowed us to reach the following significant novel conclusions:

Health-related quality of life was independent of the treatments received, the number of treatments and how advanced the cancer was. Quality of life was mostly associated with age and number of other on-going illnesses.
Changes in sexual function and loss of sexual intimacy were common and greatly bothered participants.
Younger patients (<65 years) were more likely to report financial concerns and problems with money.
The health-related quality of life following bladder cancer appeared worse than for the general population and for other common pelvic cancers (prostate and bowel cancer).

Sexual Activity, Function and Dysfunction After a Diagnosis of Bladder Cancer - Lay summary of findings

Jubber I, Rogers Z, Catto JWF, et al, J Sex Med 2022;19:1431-1441

Background: People with bladder cancer (BC) may have problems with their sex life. These problems may be caused by damage to the body from their treatments, problems from the cancer itself or from worrying about the disease. Little is known about the extent of sexual function in the bladder cancer population. As part of a large survey (Life and Bladder Cancer) we asked people with bladder cancer to tell us about their sex life.

Methods: We invited appropriate people from Yorkshire and Humber, North Derbyshire or South Tees regions to complete our survey. We asked questions about sexual activity, intimacy, erectile/ejaculatory function and vaginal dryness.

Results: 1,796 participants returned a completed survey. Of these, 1,530 (85%) answered our sex life questions. Respondents had an average age of 75 years, most were men (78%) and most were married or in a civil partnership (66%). One in three (31%) reported being sexually active. Vaginal dryness was found in 2 in 3 women (66%). Most men had problems with getting an erection (80%) and ejaculating (58%). Problems with one’s sex life were more common with more invasive treatments for more aggressive cancers.

Strengths and limitations: This is the largest survey of the sexual lives of people living with or beyond bladder cancer. However, we did not have any information on the respondent’s sex lives before their cancer treatment and so cannot tell how things changed over time.

Conclusion: Sexual problems in people living with or beyond bladder cancer are common and may be worse following more extensive treatments. It is important that patients are given information on the potential risk of sexual problems associated with bladder cancer treatment to help them make the best treatment decisions. These issues should be discussed in clinics to ensure the best support and management are provided.