Life and Bladder Cancer (LABC)

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

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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.

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Who is involved?

Chief Investigators

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

Summary of findings

LABC has achieved its objective to obtain in-depth information about living with and beyond a bladder cancer diagnosis. These outcomes can be used to understand the impact of bladder cancer and answer questions important to patients, families and medical teams.

The research data has been published in academic journals and the study team has provided two articles for the Fight Bladder Cancer magazine.

The results suggest the following:

 For people living 1-10 years beyond a bladder cancer diagnosis

  • Overall quality of life is similar regardless of treatments received or type of bladder cancer.
  • Worse quality of life is seen in those who are older and in those with other long term health conditions.
  • More sexual problems were reported by men, those who are younger or had received more extensive cancer treatment. 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.  
  • Younger people (under 65 years) reported more financial problems.
  • The bladder cancer group was compared with health PROMs data available from previous UK cancer studies involving people living beyond a bowel or prostate cancer diagnosis. The bladder patients reported significantly more problems than the other groups.

For people living 1-10 years beyond a bladder cancer diagnosis and newly diagnosed with bladder cancer

  • People with a history of bladder cancer have often used cigarettes or been exposed to tobacco smoke.
  • Use of e-cigarettes was lower in the bladder cancer group compared to the population.
  • Our bladder cancer sample reports being overweight and not sufficiently active.
  • People living beyond a bladder cancer diagnosis may benefit from support to improve lifestyle behaviours including help with stopping smoking (perhaps including the use of e-cigarettes) and help and advice to increase exercise and promote weight loss.

For people newly diagnosed with bladder cancer

  • Transurethral resection of a bladder tumour (TURBT) is an operation to take a biopsy or remove cancer from inside the bladder. Patients undergoing TURBT can be reassured regarding health-related quality of life following treatment. However, those requiring more radical treatment report greater changes in health-related quality of life with the need for appropriate clinical and supportive care to minimise the impact of treatments. 
  • Questionnaire responses regarding decision regret should reassure future patients with bladder cancer. Few participants expressed major regret and most felt engaged in their treatment choices.

It is important to acknowledge the study limitations: First our study samples are not representative of the wider ethnic groups across our region or the UK. Also, participants were more likely to be younger and from more affluent postcode areas than those who declined to take part. Therefore, we should be cautious in assuming the findings fully reflect the views and experiences of the wider bladder cancer population.

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 respondents’ 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. 

Lifestyle Factors in Patients with Bladder Cancer: A Contemporary Picture of Tobacco Smoking, Electronic Cigarette Use, Body Mass Index, and Levels of Physical Activity

Lay summary of findings

Catto JWF et al. European Urology Focus, 2023 

Background

Little is known about the lifestyle and health behaviours of people diagnosed with bladder cancer (BC).  As part of the Life and Bladder Cancer project we asked people to provide us with information around key areas of their health including height, weight, smoking history and current exercise activity.  

Methods

We invited appropriate people from Yorkshire and Humber, North Derbyshire or South Tees regions to take part in one of two studies: 

  • Study 1: A cross sectional study asked people diagnosed with BC in the last 1 to 10 years to complete a one-off survey. 
  • Study 2: A longitudinal study recruited people newly diagnosed with BC who completed a survey at four time points across a 12-month period. 

The surveys covered questions about a wide range of quality of life, social and wellbeing issues. They included a measure of current physical activity and questions about height, weight, and current smoking habits (including use of e-cigarettes/vaping and exposure to cigarette smoke). Participants were asked about their relationship status and current long term health conditions.

Findings from the BC group were compared with other available datasets including general population data on smoking and physical activity. 

Results

Data from 2092 BC participants were available. Of the people invited to participate in the studies, 55% of people responded to the Study 1 survey and 85% participated in Study 2. The majority of participants were ex-smokers (61%). Few people reported being users of e-cigarettes (9%) which is lower than the wider population. Passive smoke exposure was frequent (48%). Most participants (68%) were not meeting recommended levels of physical activity and were not as active the general population. Many respondents (44%) were overweight or obese. Lifestyle factors were associated with age, sex and long- term health conditions. For example, younger participants were less likely to smoke and were more likely to have used e-cigarettes and were more likely to have had passive smoke exposure. Women were less likely to be smokers but more likely to have been exposed to passive smoke.

Strengths and limitations

This is a large study of lifestyle behaviours of people living with or beyond bladder cancer. However, response rates to the study meant we were not able to capture the views and experiences of all patients so findings will not be fully representative of the wider BC population.  

Conclusion

People with a history of BC often have often used cigarettes or been exposed to tobacco smoke. Use of e-cigarettes was lower in the BC group compared to the population. Our BC sample report being overweight and are not sufficiently active. People living beyond a BC diagnosis may benefit from support to improve lifestyle behaviours including help with stopping smoking (perhaps including the use of e-cigarettes) and help and advice to increase exercise and promote weight loss.

Health-related quality of life after a diagnosis of bladder cancer: a longitudinal survey over the first year

Lay summary of findings

Rogers Z el al. BJU International 2023 

Objectives

To describe the Health-Related Quality of Life (HRQoL) of participants in a prospective 12-month observational cohort study of new bladder cancer diagnoses and compare with national cancer and general population surveys. 

Subjects/Patients and Methods

A prospective UK study in participants with new BC diagnoses at 13 NHS Trusts. HRQoL data was collected at 3, 6, 9 and 12 months. Questionnaires included EQ-5D, EORTC QLQ-C30, QLQ-NMIBC24 and QLQ-BLM30. Results were compared with the Cancer Quality of Life Survey and Health Survey for England.

Results

349 participants were recruited, 296 (85%) completed the first (baseline) and 233 (67%) the final survey. Participants underwent transurethral resection (TURBT) +/- intravesical therapy (n=238, 80%), radical cystectomy/radiotherapy (n=51, 17%) or palliation (n=7, 2%). At baseline, patients needing radical treatment reported worse HRQoL including lower social function (74.2 vs 83.8, p=0.002), increased fatigue (31.5 vs 26.1, p=0.03) and more future worries (39.2 vs 29.4, p=0.005) than TURBT participants. Post-treatment surveys showed no change/improvements for TURBT participants but deterioration for the radical cohort. At final survey, reports were similar to baseline, regardless of treatment. Radically treated participants continued to report poorer HRQoL including issues with body image (23.4 vs 12.5, p=0.007) and male sexual function (75.8 vs 40.4, p<0.001) compared to TURBT participants. Radically treated participants reported lower EQ-5D utility scores and more problems with usual activities than the general population.

Discussion

Patients undergoing TURBT can be reassured regarding HRQoL following treatment. However, those requiring radical treatment report greater changes in HRQoL with the need for appropriate clinical and supportive care to minimise the impact of treatments.

Other publications

Contact details

For general enquiries or more information, contact the LABC Study team.

Additional resources

Related information

Research theme: Cancer

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