Health-related quality of life after treatment for bladder cancer
Samantha J Mason
, Amy Downing
, Penny Wright
, Luke Hounsome
, Sarah E Bottomley
, Jessica Corner
, Mike Richards
James W Catto
and Adam W Glaser
BACKGROUND: Little is known about quality of life after bladder cancer treatment. This common cancer is managed using
treatments that can affect urinary, sexual and bowel function.
METHODS: To understand quality of life and inform future care, the Department of Health (England) surveyed adults surviving
bladder cancer 1–5 years after diagnosis. Questions related to disease status, co-existing conditions, generic health (EQ-5D), cancer-
generic (Social Difﬁculties Inventory) and cancer-speciﬁc outcomes (Functional Assessment of Cancer Therapy—Bladder).
RESULTS: In total, 673 (54%) patients responded; including 500 (74%) men and 539 (80%) with co-existing conditions. Most
respondents received endoscopic treatment (60%), while 92 (14%) and 99 (15%) received radical cystectomy or radiotherapy,
respectively. Questionnaire completion rates varied (51–97%). Treatment groups reported ≥1 problem using EQ-5D generic
domains (59–74%). Usual activities was the most common concern. Urinary frequency was common after endoscopy (34–37%) and
radiotherapy (44–50%). Certain populations were more likely to report generic, cancer-generic and cancer-speciﬁc problems;
notably those with co-existing long-term conditions and those treated with radiotherapy.
CONCLUSION: The study demonstrates the importance of assessing patient-reported outcomes in this population. There is a need
for larger, more in-depth studies to fully understand the challenges patients with bladder cancer face.
British Journal of Cancer (2018) 118:1518–1528; https://doi.org/10.1038/s41416-018-0084-z
Bladder cancer (BC) is the 9
most common cancer in the
United Kingdom and one of the most expensive malignancies to
The disease is best stratiﬁed according to the
presence of muscle invasion and cellular differentiation. Most
BCs are non-muscle invasive (NMIBC) and have an excellent
NMIBC tumours are managed by endo-
scopic resection, intravesical chemotherapy and long-term
Following initial treatment, many patients develop
local recurrence, requiring further treatments.
Around 1/3 of
tumours are muscle invasive BCs (MIBCs), requiring radical
treatment if cure is to be obtained. Radical cystectomy (RC) or
radiotherapy includes treatment of adjacent viscera with
regional lymph nodes, and often includes systemic chemother-
apy. The nature and toxicity of treatments and surveillance for
BC can vary between patients, between each option and over
time. There is evidence that treatment for MIBC can impact upon
which can lead to anxiety and depression.
However, there is less evidence regarding the consequences of
treatment for NMIBC and the impact on patients' Health-Related
Quality of Life (HRQL).
The importance of large scale, population-level Patient-
Reported Outcome Measures (PROMS) in improving healthcare
design, patient experience and directing care is becoming
PROMS can be used to ascertain a more
comprehensive understanding of the quality of survival, alongside
the impact and relevance of health care provision, and as a
surrogate measure within clinical trials. Previous research in the
USA used a linkage database to identify BC patients and looked at
results of 620 surveys completed before diagnosis and 856
completed after by patients ≥65 years old.
work included 823 German patients of all ages and stages of BC.
These cross-sectional studies used generic PROMs or generic
To date, no large-scale surveys of BC patients have been
conducted in the United Kindgom. As such, in 2013 the
Department of Health (DH) England designed and
administered a pilot survey of patients 1–5 years following
their initial treatment for BC. Here we report the results of the
pilot survey, which was conducted to identify a methodology to
deﬁne the HRQL of individuals in the years following their
treatment and to identify potential factors associated with poor
Received: 18 October 2017 Revised: 21 March 2018 Accepted: 22 March 2018
Published online: 14 May 2018
Leeds Institute of Cancer and Pathology, University of Leeds, Level 11, Worsley Building, Clarendon Way, Leeds LS2 9NL, UK;
Leeds Institute for Data Analytics, University of
Leeds, Level 11, Worsley Building, Clarendon Way, Leeds LS2 9NL, UK;
Public Health England, 2 Rivergate, Temple Quay, Bristol BS1 6EH, UK;
Academic Urology Unit, University
of Shefﬁeld, The Medical School, Beech Hill Road, Shefﬁeld S10 2RX, UK;
Executive Ofﬁce, University of Nottingham, Trent Building, University Park, Nottingham NG7 2RD, UK and
Correspondence: Samantha J Mason (firstname.lastname@example.org)
Joint senior authors: James W Catto, Adam W Glaser.
© The Author(s) 2018 Published by Springer Nature on behalf of Cancer Research UK