Introduction

This quality standard covers diagnosis and management of bladder cancer in adults (18 years and older) referred from primary care. It includes suspected, newly diagnosed and recurrent bladder cancers (urothelial carcinoma, adenocarcinoma, squamous cell carcinoma or small‑cell carcinoma) and urethral cancers. For more information see the bladder cancer topic overview.

Why this quality standard is needed

Bladder cancer is defined by the development of a tumour in the lining of the bladder. In the case of non‑muscle‑invasive bladder cancer, cancerous cells are contained inside the lining of the bladder. Muscle‑invasive bladder cancer occurs if cancerous cells spread to the surrounding muscle.

The main risk factor for bladder cancer is increasing age, but smoking and exposure to some industrial chemicals also increase risk.

Bladder cancer is usually identified on the basis of visible blood in the urine or blood found by urine testing. It often presents for the first time as an emergency admission, which is frequently associated with a poor prognosis.

According to Cancer Research UK's Bladder cancer incidence statistics, in 2012 bladder cancer was the seventh most common cancer in the UK, with just over 10,700 cases diagnosed that year. In 2012 it was also the seventh most common cause of cancer death in the UK, accounting for approximately 5200 deaths in that year. Bladder cancer is 3–4 times more common in men than in women, and most cases occur in people aged over 60. The involvement of the urogenital tract and the nature of the treatments give bladder cancer a strong psychological impact, in addition to the physical impact of the disease and its treatments, which is often profound.

Most bladder cancers (75–80%) do not involve the muscle wall and are usually treated with telescopic removal of the cancer (transurethral resection of bladder tumour [TURBT]). This may be followed by instilling chemotherapy or vaccine-based therapy into the bladder, with prolonged telescopic checking of the bladder (cystoscopy) as follow-up. Some people with non‑muscle‑invasive bladder cancer who are at higher risk of poor prognosis are treated with major surgery to remove the bladder (cystectomy).

Adults with cancer in or through the bladder muscle wall may be treated with intent to cure using chemotherapy, cystectomy or radiotherapy, and those who have cancer too advanced to cure may have palliative radiotherapy and chemotherapy.

The quality standard is expected to contribute to improvements in the following outcomes:

  • experience of care: hospital and outpatient services

  • experience of carers: palliative care

  • quality of life for adults with bladder cancer

  • cancer survival rates

  • premature mortality.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measurable improvements in the 3 dimensions of quality – patient safety, patient experience and clinical effectiveness – for a particular area of health or care. They are derived from high-quality guidance, such as that from NICE or other sources accredited by NICE. This quality standard, in conjunction with the guidance on which it is based, should contribute to the improvements outlined in the following 2 outcomes frameworks published by the Department of Health:

Tables 1 and 2 show the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving.

Table 1 NHS Outcomes Framework 2015–16

Domain

Overarching indicators and improvement areas

1 Preventing people from dying prematurely

Overarching indicators

1a Potential years of life lost (PYLL) from causes considered amenable to healthcare:

i Adults

1b Life expectancy at 75

i Males ii Females

Improvement areas

Reducing premature mortality from the major causes of death

1.4 Under 75 mortality rate from cancer* (PHOF 4.5)

i One- and ii Five-year survival from all cancers

v One- and vi Five-year survival from cancers diagnosed at stage 1&2** (PHOF 2.19)

4 Ensuring that people have a positive experience of care

Overarching indicator

4b Patient experience of hospital care

4d Patient experience characterised as poor or worse

ii. Hospital care

Improvement areas

Improving people's experience of outpatient care

4.1 Patient experience of outpatient services

Improving hospitals' responsiveness to personal needs

4.2 Responsiveness to inpatients' personal needs

Improving people's experience of accident and emergency services

4.3 Patient experience of A&E services

Improving the experience of care for people at the end of their lives

4.6 Bereaved carers' views on the quality of care in the last 3 months of life

Alignment across the health and social care system

* Indicator is shared

** Indicator is complementary

Table 2 Public health outcomes framework for England, 2013–16

Domain

Objectives and indicators

2 Health improvement

Objective

People are helped to live healthy lifestyles, make healthy choices and reduce health inequalities

Indicators

2.19 Cancer diagnosed at stage 1 and 2** (NHSOF 1.4)

4 Healthcare public health and preventing premature mortality

Objective

Reduced numbers of people living with preventable ill health and people dying prematurely, whilst reducing the gap between communities

Indicators

4.3 Mortality rate from causes considered preventable** (NHSOF 1a)

4.5 Under 75 mortality rate from cancer* (NHSOF 1.4)

Alignment across the health and social care system

* Indicator shared with the NHS Outcomes Framework

** Complementary indicators in the NHS Outcomes Framework

Patient experience and safety issues

Ensuring that care is safe and that people have a positive experience of care is vital in a high-quality service. It is important to consider these factors when planning and delivering services relevant to bladder cancer.

NICE has developed guidance and an associated quality standard on patient experience in adult NHS services (see the NICE pathway on patient experience in adult NHS services), which should be considered alongside this quality standard. They specify that people receiving care should be treated with dignity, have opportunities to discuss their preferences, and are supported to understand their options and make fully informed decisions. They also cover the provision of information to patients and service users. Quality statements on these aspects of patient experience are not usually included in topic-specific quality standards. However, recommendations in the development sources for quality standards that affect patient experience and are specific to the topic are considered during quality statement development.

Coordinated services

The quality standard for bladder cancer specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole bladder cancer care pathway. A person-centred, integrated approach to providing services is fundamental to delivering high-quality care to adults with bladder cancer.

The Health and Social Care Act 2012 sets out a clear expectation that the care system should consider NICE quality standards in planning and delivering services, as part of a general duty to secure continuous improvement in quality. Commissioners and providers of health and social care should refer to the library of NICE quality standards when designing high-quality services. Other quality standards that should also be considered when choosing, commissioning or providing a high-quality bladder cancer service are listed in related quality standards.

Training and competencies

The quality standard should be read in the context of national and local guidelines on training and competencies. All healthcare professionals involved in assessing, caring for and treating adults with bladder cancer should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard. Quality statements on staff training and competency are not usually included in quality standards. However, recommendations in the development source(s) on specific types of training for the topic that exceed standard professional training are considered during quality statement development.

Role of families and carers

Quality standards recognise the important role families and carers have in supporting adults with bladder cancer. If appropriate, healthcare professionals should ensure that family members and carers are involved in the decision-making process about investigations, treatment and care.