Quality standard
Quality statement 6: Follow-up and monitoring of late effects
Quality statement 6: Follow-up and monitoring of late effects
Quality statement
Children and young people (aged 0 to 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
The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.
Structure
Evidence of local arrangements to ensure that children and young people (aged 0 to 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: Evidence can be collected from information recorded locally by provider organisations, for example from clinical pathways.
Process
a) The proportion of children and young people (aged 0 to 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 to 24 years) completing treatment for cancer.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records.
b) The proportion of children and young people (aged 0 to 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 to 24 years) treated for cancer with an end-of-treatment summary and care plan.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records.
What the quality statement means for different audiences
Service providers ensure that services and systems are in place for children and young people (aged 0 to 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 to 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 to 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.
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
Long term follow up of survivors of childhood cancer. SIGN clinical guideline 132 (2013), sections 3.6 (page 11, paragraph 5), 11.2 (page 35, paragraph 4) and 11.3 (page 35, paragraph 6)
Definitions of terms used in this quality statement
End-of-treatment summary and care plan
A plan that should include details of:
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treatment, including chemotherapeutic agents and their cumulative doses, radiotherapy and surgery
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existing or potential late effects associated with the cancer or treatment
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agreed follow-up, including where and with whom
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monitoring for:
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relapse or recurrence
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immediate and late effects of treatment
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risk of second malignancy.
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As a minimum, the care plan should be available and revised at:
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the end of treatment
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entry into long-term follow-up (usually 5 years after completing therapy) and
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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]