Quality standard

Quality statement 4: Risk of late effects of treatment

Quality statement 4: Risk of late effects of treatment

Quality statement

Adults who finish treatment for brain tumours have an assessment and discussion about their risk of late effects of treatment at their first follow‑up appointment.

Rationale

The risk of late effects of treatment will be discussed with adults with brain tumours as part of the consent process before treatment. This discussion should be revisited when treatment is finished (at the first follow-up appointment after finishing treatment) so that the person's individual risk can be assessed based on the treatment they received. Early identification of a person's potential late effects of treatment for a brain tumour, which can occur months or years later, may allow the risk to be modified and the effect to be quickly identified through ongoing monitoring and treated. This can increase the length and quality of life for people who finish treatment.

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 protocol to assess and discuss the risk of late effects of treatment with adults who finish treatment for brain tumours, at their first follow‑up appointment.

Data source: Data could be collected from information recorded locally by healthcare professionals and provider organisations, for example, from service protocol and written treatment summaries.

Process

a) Proportion of adults who finish treatment for brain tumours who have an assessment for their risk of late effects of treatment at their first follow‑up appointment.

Numerator – the number in the denominator who have an assessment for their risk of late effects of treatment at their first follow‑up appointment.

Denominator – the number of adults who finish treatment for brain tumours.

Data source: Data could be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.

b) Proportion of adults who finish treatment for brain tumours who have a documented discussion about their risk of late effects of treatment at their first follow‑up appointment.

Numerator – the number in the denominator who have a documented discussion about their risk of late effects of treatment at their first follow‑up appointment.

Denominator – the number of adults who finish treatment for brain tumours.

Data source: Data could be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.

Outcome

Adults who finish treatment for brain tumours feel informed about their risk of late effects of treatment.

Data source: Data could be collected from a local survey of adults who finish treatment for brain tumours and their family and carers.

What the quality statement means for different audiences

Service providers (such as secondary and tertiary care services and specialist regional centres) ensure that processes are in place to assess adults who finish treatment for brain tumours for the risk of late effects of treatment at their first follow‑up appointment and to record any risks in their written treatment summary. Providers ensure that staff can explain and discuss any risk of late effects of treatment with the person and their family and carers (if appropriate). Providers ensure that referral pathways are in place for ongoing monitoring for late effects of treatment.

Healthcare professionals (such as clinical oncologists and therapeutic radiographers) assess adults who finish treatment for brain tumours for the risk of late effects of treatment at their first follow‑up appointment and record any risks in their written treatment summary. Healthcare professionals explain and discuss any risk of late effects of treatment with the person and their family and carers (if appropriate). Healthcare professionals refer adults who finish treatment for brain tumours for monitoring of potential late effects of treatment if needed.

Commissioners (NHS England) commission services that carry out assessments for adults who finish treatment for brain tumours for the risk of late effects of treatment at their first follow‑up appointment and discuss any risks with the person and their family and carers (if appropriate). Commissioners work with providers to ensure referral pathways are in place for ongoing monitoring for late effects of treatment.

Adults who finish treatment for brain tumours have an assessment at their first follow‑up appointment to find out if they might develop side effects after their treatment. Their healthcare professional will explain any risks to them and their family and carers (if appropriate) and discuss how the risks will be managed.

Source guidance

Definitions of terms used in this quality statement

Late effects of treatment

People with brain tumours can develop side effects of treatment months or years after treatment. The side effects can include:

  • cataracts

  • cavernoma

  • cognitive decline

  • epilepsy

  • hearing loss

  • hypopituitarism

  • infertility

  • neuropathy (for example, nerve damage causing visual loss, numbness, pain or weakness)

  • radionecrosis

  • secondary tumours

  • SMART (stroke-like migraine attacks after radiotherapy)

  • speech, language and communication difficulties

  • stroke.

[NICE's guideline on brain tumours (primary) and brain metastases in adults, recommendations 1.11.1, and expert opinion]

Equality and diversity considerations

It is important for providers to make reasonable adjustments to ensure that adults with additional needs, such as physical, sensory and learning disabilities or cognitive impairment, and people who do not speak or read English, or who have communication difficulties, can have an assessment and discussion about potential late effects of treatment that is accessible and takes account of their needs. Healthcare professionals should be aware that adults with brain tumours can develop a disability because of their tumour, the treatment they receive and potential late effects of their treatment. People should have access to an interpreter (including British Sign Language) or advocate if needed. Adults with cognitive impairment may need support and more time to process information.