Introduction

This quality standard covers the diagnosis, treatment, support and follow‑up of sarcoma in children, young people and adults. For more information see the sarcoma topic overview.

Why this quality standard is needed

Sarcomas are a rare and diverse group of cancers that arise from cells that make up the connective tissue structure, including bone, cartilage, muscle, blood vessels, nerves and fat. Sarcomas can be broadly divided into bone and soft tissue sarcomas. Collectively, bone and soft tissue sarcomas account for around 1% of all malignancies diagnosed in the UK. Incidence figures from the National Cancer Intelligence Network (NCIN) show that there were 3298 new diagnoses of soft tissue sarcoma and 531 new diagnoses of bone sarcoma during 2010 in the UK.

Most healthcare professionals will see only a few cases of sarcoma in their working lives. A key part of this quality standard is therefore focused on ensuring that people with sarcoma are treated by healthcare professionals with experience and expertise in treating sarcoma. Sarcomas are a diverse set of tumours, and particular sarcoma subtypes can pose different challenges for treatment. In addition, there may not be healthcare professionals with experience in treating rarer sarcoma subtypes at every sarcoma treatment centre.

This quality standard also aims to ensure that people with sarcoma are informed about their condition, receive appropriate and timely advice and can access relevant services. It is important that people with sarcoma understand their condition and treatment options. Therefore this quality standard should be considered alongside the NICE quality standard for patient experience in adult NHS services (statement 5 in particular).

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

  • patient experience of care

  • recurrence rates

  • survival rates

  • treatment morbidity and physical function.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measurable quality improvements within 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 2014–15

Domain

Overarching indicators and improvement areas

1 Preventing people from dying prematurely

Overarching indicator

1a Potential Years of Life Lost (PYLL) from causes considered amenable to healthcare

i Adults ii Children and young people

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

Reducing deaths in babies and young children

1.6 iii Five‑year survival from all cancers in children

4 Ensuring that people have a positive experience of care

Overarching indicator

4a Patient experience of primary care

i GP services

4b Patient experience of 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 in‑patients' personal needs

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

Improving children and young people's experience of healthcare

4.8 Children and young people's experience of outpatient services

Alignment across the health and social care system

* Indicator shared with Public Health Outcomes Framework (PHOF)

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 inequities

Indicators

2.19 Cancer diagnosed at stage 1 and 2

4 Healthcare public health and preventing premature mortality

Objective

Reduced numbers of people living with preventable ill health and people dying prematurely, while 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 1.4i)

Aligning across the health and care system

* Indicator shared with the NHS Outcomes Framework (NHSOF)

** Complementary to indicators in the NHS Outcomes Framework (NHSOF)

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 sarcoma.

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 be 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 impact on patient experience and are specific to the topic are considered during quality statement development.

Coordinated services

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

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 sarcoma 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 people with sarcoma 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 sources 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 people with sarcoma. If appropriate, healthcare professionals should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care.