Quality standard

Quality statement 6: Follow-up and monitoring of late effects

Quality statement

Children and young people (aged 0–24 years) who have been treated for cancer have an end-of-treatment summary and care plan that includes agreed follow-up and monitoring arrangements.

Rationale

Children and young people who have had cancer are at risk of long-term adverse effects from the cancer and its treatment. At the end of their treatment they should be provided with verbal and written information about the long-term risks of their cancer and treatment, and the arrangements for monitoring and identifying potential problems and treating them as quickly as possible.

Quality measures

Structure

Evidence of local arrangements to ensure that children and young people (aged 0–24 years) who have been treated for cancer have an end-of-treatment summary and care plan that includes agreed follow-up and monitoring arrangements.

Data source: Local data collection.

Process

a) The proportion of children and young people (aged 0–24 years) completing treatment for cancer who have an end-of-treatment summary and care plan.

Numerator – the number of people in the denominator who have an end-of-treatment summary and care plan.

Denominator – the number of children and young people (aged 0–24 years) completing treatment for cancer.

b) The proportion of children and young people (aged 0–24 years) treated for cancer who have their end-of-treatment summary and care plan reviewed 5 years after the end of their initial treatment.

Numerator – the number of people in the denominator who have their end-of-treatment summary and care plan reviewed 5 years after the end of their initial treatment.

Denominator – the number of children and young people (aged 0–24 years) treated for cancer with an end-of-treatment summary and care plan.

Data source: a), b) Local data collection and National Cancer Peer Review Programme Manual for cancer services: children's cancer measures: 11-7B-211 Follow up and care planning decision, and 1-7B-212 Late effects MDT follow up and long term sequelae protocol.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers ensure that services and systems are in place for children and young people (aged 0–24 years) who have been treated for cancer to have an end-of-treatment summary and care plan that includes agreed follow-up and monitoring arrangements.

Healthcare professionals ensure that children and young people (aged 0–24 years) who have been treated for cancer have an end-of-treatment summary and care plan that includes agreed follow-up and monitoring arrangements, and ensure that the plan is reviewed 5 years after the end of initial treatment.

Commissioners ensure that they commission services that provide children and young people (aged 0–24 years) who have been treated for cancer with an end-of-treatment summary and care plan that includes agreed follow-up and monitoring arrangements. This should include commissioning services with long-term follow-up clinics to deliver the agreed care plan.

What the quality statement means for patients, service users and carers

Children and young people who have had treatment for cancer should have a care plan developed at the end of their treatment. This plan should include the treatment they have received, possible problems that they may experience, details of future appointments that have been agreed, how checks for possible problems should be carried out and who to contact if they have any concerns after their treatment.

Source guidance

Definitions of terms used in this quality statement

End-of-treatment summary and care plan

A plan that should include details of:

  • treatment, including chemotherapeutic agents and their cumulative doses, radiotherapy and surgery

  • existing or potential late effects associated with the cancer or treatment

  • agreed follow-up, including where and with whom

  • monitoring for:

    • relapse or recurrence

    • immediate and late effects of treatment

    • risk of second malignancy.

As a minimum, the care plan should be available and revised at:

  • the end of treatment

  • entry into long-term follow-up (usually 5 years after completing therapy) and

  • discharge from formal follow-up by the oncologist or the long-term follow-up clinic.

The care plan should also be used by key workers to support transition from children's services to young people's services and from young people's services to adult services. [Expert opinion]