Introduction

This quality standard covers the provision of all aspects of cancer services for children and young people with cancer. For this quality standard, children are defined as aged 0–15 years and young people as 16–24 years, though this is not a formal upper age limit because the needs and circumstances of individuals will vary, including their need to access age-specific services. For more information see the topic overview.

Why this quality standard is needed

Cancers are grouped into 3 broad categories: solid tumours, haematological malignancies and central nervous system malignancies. Cancers that develop in children and young people are complex and differ from those that develop in adults. Early diagnosis is challenging in children and young people because cancers are rare and more diverse. The point at which the cancer is diagnosed can directly affect the outcome of any treatment. Referral guidelines for suspected cancer (NICE clinical guideline 27)[1] contains recommendations on the referral of children and young people for investigations for cancer.

Cancers in children are rare (less than 1% of all cancers in industrialised countries)[2]. The crude incidence rate shows that in the UK there are 160 new cancer cases for every million boys and 137 for every million girls each year. In 2008–2010, there was an average of 1603 new cases of childhood cancer each year in the UK: 883 (55%) in boys and 720 (45%) in girls.

Cancers in young people are also rare, equating to 269 cases per year for every million young people in the UK population. In 2008–2010, an average of 2214 new cases of cancer in young people was reported[2].

Because cancers in children and young people are rare and often complex, services need to be able to consider each case of cancer individually, taking into consideration the clinical and wider needs of each child and young person, and their families and carers.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measureable 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 3 outcomes frameworks published by the Department of Health:

Tables 1–3 show the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving.

Table 1 Adult Social Care Outcomes Framework 2013–14

Domain

Overarching and outcome measures

1 Enhancing quality of life for people with care and support needs

Overarching measure

1A Social care‑related quality of life*

3 Ensuring that people have a positive experience of care and support

Overarching measure

3A Overall satisfaction of people who use services with their care and support

3B Overall satisfaction of carers with social services

*Indicator complementary with NHS Outcomes Framework (NHSHOF)

Table 2 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

Improvement areas

Reducing premature mortality from the major causes of death

1.4 Under 75 mortality from cancer*

2 Ensuring people feel supported to manage their condition

Overarching indicator

2 Proportion of people feeling supported to manage their condition**

4 Ensuring that people have a positive experience of care

Overarching indicator

4b Patient experience of hospital care

Improvement areas

4.2 Responsiveness to in-patients' personal needs

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

4.8 Children and young people's experience of healthcare

5 Treating and caring for people in a safe environment and protecting them from avoidable harm

Overarching indicators

5a Patient safety incidents reported

5b Safety incidents involving severe harm or death

5c Hospital deaths attributable to problems in care

Improvements areas

5.4 Incidence of medication errors causing serious harm

Alignment across the health and social care system

*Indicator shared with Public Health Outcomes Framework (PHOF)

**Indicator complementary with Adult Social Care Outcomes Framework (ASCOF)

Indicators in italics are 'placeholders', pending development or identification

Table 3 Public health outcomes framework for England, 2013–2016

Domain

Objectives and indicators

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*

4.5 Under 75 mortality rate from cancer*

Alignment across the health and social care system

*Indicator shared with NHS Outcomes Framework (NHSHOF)

Coordinated services

The quality standard for children and young people with cancer specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole cancer care pathway. A person-centred, integrated approach to providing services is fundamental to delivering high-quality care to children and young people with 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 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 health and social care practitioners involved in assessing, supporting and treating children and young people with cancer should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard.

Role of families and carers

Quality standards recognise the important role families and carers have in supporting children and young people with cancer. If appropriate, health and social care practitioners should ensure that family members and carers are involved in the decision-making process about investigations, treatment and care.



[1] This clinical guideline is currently being updated. When the update is complete a NICE quality standard will be developed for this topic.

[2] All data compiled by the Office for National Statistics and published by Cancer Research UK. The Office for National Statistics classifies children as aged 0–14 years and young people as 15–24 years.