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Brain tumours and metastases

About

What is covered

This interactive flowchart covers diagnosing, monitoring and managing primary benign and malignant brain tumours, or brain metastases, in people aged 16 or over. It aims to improve diagnosis and care, including standardising the care people have, how information and support are provided, and palliative care.

Updates

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on brain tumours in adults, including cancer, in an interactive flowchart

What is covered

This interactive flowchart covers diagnosing, monitoring and managing primary benign and malignant brain tumours, or brain metastases, in people aged 16 or over. It aims to improve diagnosis and care, including standardising the care people have, how information and support are provided, and palliative care.

Sources

NICE guidance and other sources used to create this interactive flowchart.
Photodynamic therapy for brain tumours (2009) NICE interventional procedures guidance 290
Cancer services for children and young people (2014) NICE quality standard 55
AlignRT for intracranial stereotactic radiosurgery (2018) NICE medtech innovation briefing 147

Quality standards

Cancer services for children and young people

These quality statements are taken from the cancer services for children and young people quality standard. The quality standard defines clinical best practice in cancer services for children and young people and should be read in full.

Quality statements

Multidisciplinary teams for young people

This quality statement is taken from the children and young people with cancer quality standard. The quality standard defines clinical best practice in cancer services for children and young people and should be read in full.

Quality statement

Young people (aged 16–24 years) with cancer have their diagnosis, treatment and support agreed and delivered by a cancer-site-specific multidisciplinary team and a teenage and young adult multidisciplinary team.

Rationale

Children’s services have well-established models of care to ensure that children with cancer are seen by a children’s cancer multidisciplinary team. However, there is variation in access to age-appropriate care for young people. In addition to cancers more commonly found in their own age group, young people can also experience cancers more common to children or adults. It is therefore important for them to be seen by both a cancer-site-specific multidisciplinary team and a teenage and young adult multidisciplinary team, to ensure that they have a correct diagnosis and receive the most effective treatment.

Quality measures

Structure
Evidence of local arrangements for all young people (aged 16–24 years) with cancer to have their diagnosis, treatment and support agreed and delivered by a cancer-site-specific multidisciplinary team and a teenage and young adult multidisciplinary team.
Data source: Local data collection.
Process
a) The proportion of young people (aged 16–24 years) diagnosed with cancer who have their diagnosis, treatment and support agreed by a cancer-site-specific multidisciplinary team and a teenage and young adult multidisciplinary team.
Numerator – the number of people in the denominator who have their diagnosis, treatment and support agreed by a cancer-site-specific multidisciplinary team and a teenage and young adult multidisciplinary team.
Denominator – the number of young people (aged 16–24 years) diagnosed with cancer.
Data source: Local data collection.
b) The proportion of young people (aged 16–24 years) with cancer who have their treatment and support delivered by a cancer-site-specific multidisciplinary team and a teenage and young adult multidisciplinary team.
Numerator – the number of people in the denominator who have their treatment and support delivered by a cancer-site-specific multidisciplinary team and a teenage and young adult multidisciplinary team.
Denominator – the number of young people (aged 16–24 years) with cancer.
Data source: Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers ensure that cancer-site-specific multidisciplinary teams and a teenage and young adult multidisciplinary team are in place to agree and deliver the diagnosis, treatment and support for young people (aged 16–24 years) with cancer.
Health and social care practitioners work collaboratively across cancer-site-specific and teenage and young adult multidisciplinary teams to agree and deliver the diagnosis, treatment and support for young people (aged 16–24 years) with cancer.
Commissioners ensure that they commission cancer services for young people (aged 16–24 years) that include provision of cancer-site-specific multidisciplinary teams and a teenage and young adult multidisciplinary team for young people with cancer.

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

Young people with cancer (aged 16–24 years) have their diagnosis, treatment and support agreed and delivered by a team of experts in the specific type of cancer that they have and a team of experts in treating and supporting young people with cancer.

Source guidance

Definitions of terms used in this quality statement

Teenage and young adult multidisciplinary team
A dedicated multidisciplinary team with expertise in cancer-related issues for teenagers and young adults, and their families and carers. The composition of the multidisciplinary team varies depending on the stage in the care pathway, but may include a:
  • lead oncologist/haematologist with experience in teenage and young adult cancer
  • principal treatment centre lead nurse
  • specialist nurse
  • psychologist or level 3 psychology support
  • young people’s social worker
  • youth worker or activity coordinator
  • teenage and young adult key worker.
[Adapted from Children and young people with cancer: improving outcomes in children and young people with cancer, Multidisciplinary teams: page 92, table 4; and National Cancer Peer Review Programme Manual for cancer services: teenage and young adults cancer measures 11-7D-201 Lead clinician and core team membership]
Cancer-site-specific multidisciplinary team
A dedicated multidisciplinary team with specialist expertise in treating cancer in specific sites. [Adapted from Children and young people with cancer: improving outcomes in children and young people with cancer, Multidisciplinary teams, page 94, paragraph 1]

Access to clinical trials

This quality statement is taken from the children and young people with cancer quality standard. The quality standard defines clinical best practice in cancer services for children and young people and should be read in full.

Quality statement

Children and young people (aged 0–24 years) with cancer should be offered the opportunity to take part in clinical trials if they are eligible.

Rationale

Involvement of children and young people with cancer in clinical trials has made an important contribution to improved childhood cancer survival rates. Multidisciplinary teams should identify suitable trials for children and young people, and key workers should provide support to the patient and their family in deciding whether to participate. The decision to participate should be an informed choice.

Quality measures

Structure
Evidence of local arrangements to ensure that children and young people (aged 0–24 years) are assessed for eligibility for relevant clinical trials and offered the opportunity to take part.
Data source: Local data collection.
Process
a) The proportion of children and young people (aged 0–24 years) with cancer and eligible for a clinical trial who are offered the opportunity to take part.
Numerator – the number of people in the denominator offered the opportunity to take part.
Denominator – children and young people (aged 0–24 years) with cancer and eligible for a clinical trial.
Data source: Local data collection.
b) The proportion of children and young people (aged 0–24 years) with cancer who are recruited into a clinical trial for which they are eligible.
Numerator – the number of people in the denominator recruited into the clinical trial.
Denominator – the number of children and young people (aged 0–24 years) with cancer and eligible for a clinical trial.
Data source: Local data collection.

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

Service providers ensure that multidisciplinary teams discuss the eligibility of children and young people (aged 0–24 years) with cancer for relevant clinical trials and promote participation in research and development.
Healthcare professionals from the multidisciplinary teams identify relevant clinical trials for children and young people (aged 0–24 years) with cancer, assess eligibility and offer opportunities to take part.
Commissioners ensure that the cancer services they commission for children and young people (aged 0–24 years) identify relevant clinical trials and support participation.

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

Children and young people with cancer are offered the opportunity to take part in clinical trials (which carry out research into new treatments) that have been identified as suitable for them and are supported to participate in these trials if they want to.

Source guidance

Equality and diversity considerations

When providing support for children and young people to access clinical trials any potential difficulties in participation, which may include distance, disability and financial barriers, should be taken into account.

Electronic prescribing of chemotherapy

This quality statement is taken from the children and young people with cancer quality standard. The quality standard defines clinical best practice in cancer services for children and young people and should be read in full.

Quality statement

Children and young people (aged 0–24 years) receiving chemotherapy have it prescribed using an electronic prescribing system.

Rationale

There are a number of risks associated with prescribing and administering chemotherapy. Electronic prescribing of chemotherapy should be used in all settings to help reduce the risks. However, at present it is widely used in adult cancer care but not available in all children’s chemotherapy services. Chemotherapy regimens for children and young people are varied and often very complex, and there is a high risk of error in calculating the correct doses, fluid volumes and scheduling. Drug dose and fluid volume calculations are based on weight and body surface area. Electronic prescribing systems perform the calculations and support safer prescribing.

Quality measures

Structure
Evidence of local arrangements to ensure that all children and young people (aged 0–24 years) receiving chemotherapy have it prescribed using an electronic prescribing system.
Data source: Local data collection. National Cancer Peer Review Programme Manual for cancer services: children’s cancer measures: 11-7B-161 Computer generated prescriptions.
Outcome
The number of patient safety incidents in children and young people (aged 0–24 years) related to chemotherapy prescriptions.
Data source: Local data collection.

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

Service providers ensure that an electronic prescribing system is in place for children and young people (aged 0–24 years) receiving chemotherapy.
Healthcare professionals use electronic prescribing systems for prescribing chemotherapy regimens for children and young people (aged 0–24 years).
Commissioners work with service providers to ensure that children and young people (aged 0–24 years) receiving chemotherapy have it prescribed using an electronic prescribing system.

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

Children and young people with cancer receiving chemotherapy have the correct amount of drugs and fluids, and when to have them, calculated by a computer-based prescribing system.

Source guidance

Definitions of terms used in this quality statement

Electronic prescribing system
A computer package that calculates the correct chemotherapy doses, fluids and scheduling for each child and young person based on previously entered and verified data. The system should be suitable for use with paediatric chemotherapy regimens. [Expert opinion]

Psychological and social support

This quality statement is taken from the children and young people with cancer quality standard. The quality standard defines clinical best practice in cancer services for children and young people and should be read in full.

Quality statement

Children and young people (aged 0–24 years) with cancer, and their families and carers, have their psychological and social needs assessed at key points in their care pathway and receive support based on their identified needs.

Rationale

The impact of a diagnosis of cancer, its prognosis and its treatment can be devastating and wide-ranging for children and young people, and their families and carers. As the child or young person progresses through their care pathway, their psychological and social needs, and those of their family, are likely to change. To help address this, their psychological and social support needs should be reassessed at key points to inform their care plan and to assess the need for specialist services such as psychologists.

Quality measures

Structure
a) Evidence of local arrangements to ensure that children and young people (aged 0–24 years) with cancer, and their families and carers, have their psychological and social needs assessed at key points on their care pathway.
Data source: National Cancer Peer Review Programme Manual for cancer services: children’s cancer measures: 11-7B-322 PTC psychosocial assessment guidelines.
b) Evidence of local arrangements to ensure that children and young people (aged 0–24 years) with cancer, and their families and carers, can access services delivering psychological and social support.
Data source: National Cancer Peer Review Programme Manual for cancer services: children’s cancer measures: 11-7B-322 PTC psychosocial assessment guidelines.
Process
a) The proportion of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway who have their psychological and social needs assessed.
Numerator – the number of people in the denominator who have their psychological and social needs assessed.
Denominator – the number of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway.
Data source: Local data collection.
b) The proportion of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway whose family and carers have their psychological and social needs assessed.
Numerator – the number of people in the denominator whose family and carers have their psychological and social needs assessed.
Denominator – the number of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway.
Data source: Local data collection.
c) The proportion of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway who receive support with identified psychological or social needs.
Numerator – the number of people in the denominator receiving psychological or social support.
Denominator – the number of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway with identified psychological or social needs.
Data source: Local data collection.
d) The proportion of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway whose family and carers receive support with identified psychological and social needs.
Numerator – the number of people in the denominator receiving psychological or social support.
Denominator – the number of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway whose family and carers have identified psychological or social needs.
Data source: Local data collection.
Outcome
Children and young people with cancer, and their families and carers, feel supported during their care.
Data source: Local data collection. National Cancer Peer Review Programme Manual for cancer services: teenage and young adults measures: 11-7D-210 TYA cancer measures patient experience exercise.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers ensure that the psychological and social needs of children and young people (aged 0–24 years) with cancer, and their families and carers, are assessed at key points in their care pathway, and that protocols are in place for referral to the appropriate specialists, such as psychologists.
Health and social care practitioners carry out psychological and social needs assessments for children and young people (aged 0–24 years) with cancer, and their families and carers, at key points in their care pathway, and use the results to inform the care plan and offer appropriate specialist support.
Commissioners ensure that they commission services that assess the psychological and social needs of children and young people (aged 0–24 years), and their families and carers, at key points in their care pathway. They should commission services to provide specialist psychological and social support to children and young people with cancer, and their families and carers.

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

Children and young people with cancer, and their families and carers, have their psychological and social needs assessed at different stages during and after their treatment. These assessments should result in a care plan that can be used to get extra help and support if they need it.

Source guidance

Definitions of terms used in this quality statement

Psychological and social needs assessment
An assessment of psychological and social support needs that includes:
  • patient information needs and coping skills that are age-appropriate
  • family information needs and coping skills
  • financial support
  • practical support
  • social and cultural circumstances
  • educational and employment needs
  • the needs of siblings
  • relationships with peers
  • spiritual needs.
The assessment should result in a care plan to meet the identified needs, agreed with the child or young person, and their family or carers. [Expert opinion and adapted from Children and young people with cancer: improving outcomes in children and young people with cancer. Psychosocial care: page 74, paragraph 4]
Key points in their care pathway
The key points in a care pathway when psychological and social needs should be assessed are:
  • at diagnosis
  • during treatment
  • at the end of treatment
  • during long-term follow-up
  • at relapse
  • during palliative care
  • following bereavement (for families and carers).
Psychological and social support
Psychological and social support is the supportive care received by a child or young person and their family or carers during active cancer therapy and long-term follow-up, and it may include respite care, palliative care and bereavement counselling for families and carers. Psychological or social support may help with:
  • how the child or young person perceives the challenge of the disease, its symptoms and the side effects of treatment
  • problems experienced by the child or young person with body image, relationships with peers and potential partners, difficulties with schooling and other education, or difficulties with employment
  • the disruption of the normal transition for young people from dependence on their family to independence
  • the shock and grief a family experiences when a member of the family has a life-threatening illness.

Equality and diversity considerations

When providing psychological and social support for children and young people with cancer, any potential difficulties in accessing services, which may include distance, disability and financial barriers, should be taken into account.

Neuro-rehabilitation

This quality statement is taken from the children and young people with cancer quality standard. The quality standard defines clinical best practice in cancer services for children and young people and should be read in full.

Quality statement

Children and young people (aged 0–24 years) who have had a central nervous system malignancy receive a specialist neuro-rehabilitation care package.

Rationale

All children and young people who have had cancer are likely to need some form of rehabilitation. Many children and young people who have had cancer affecting their central nervous system (such as brain tumours) are likely to need complex rehabilitation over a long period of time (for the rest of their lives for some people). Access to skilled neuro-rehabilitation can make a significant difference, enabling children and young people to become independent adults and reducing the need for ongoing complex care packages.

Quality measures

Structure
Evidence of local arrangements to ensure that all children and young people (aged 0–24 years) who have had a central nervous system malignancy receive a specialist neuro-rehabilitation care package.
Data source: Local data collection.
Process
The proportion of children and young people (aged 0–24 years) who have had treatment for a central nervous system malignancy who receive a specialist neuro-rehabilitation care package.
Numerator – the number of people in the denominator receiving a specialist neuro-rehabilitation care package.
Denominator – the number of children and young people (aged 0–24 years) who have had treatment for a central nervous system malignancy.
Data source: Local data collection.

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

Service providers ensure that specialist neuro-rehabilitation care packages are available for children and young people (aged 0–24 years) who have had a central nervous system malignancy.
Healthcare professionals ensure that children and young people (aged 0–24 years) who have had a central nervous system malignancy receive a specialist neuro-rehabilitation care package.
Commissioners ensure that they commission services that provide specialist neuro-rehabilitation care packages for children and young people (aged 0–24 years) who have had central nervous system malignancy.

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

Children and young people who have had cancer of the central nervous system (such as a brain tumour) are supported by a team of specialists to help them recover as fully as possible (called neuro-rehabilitation).

Source guidance

Definitions of terms used in this quality statement

Specialist neuro-rehabilitation care package
A package of support that takes into account the effects of the cancer and treatment on neurological, physical, psychological and academic function, recognising that these effects can become more evident over time. The specialist team should cover but not be limited to: speech and language therapy, physiotherapy, occupational therapy, neurology and psychology (including neuropsychology). The rehabilitation programme should continue for as long as it is needed and can make a difference. [Adapted from Children and young people with cancer: improving outcomes in children and young people with cancer. Rehabilitation: page 68, paragraph 6]

Equality and diversity considerations

When providing neuro-rehabilitation services for children and young people with cancer, any potential difficulties in accessing services, which may include distance, disability and financial barriers, should be taken into account.

Follow-up and monitoring of late effects

This quality statement is taken from the children and young people with cancer quality standard. The quality standard defines clinical best practice in cancer services for children and young people and should be read in full.

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]

Fertility support

This quality statement is taken from the children and young people with cancer quality standard. The quality standard defines clinical best practice in cancer services for children and young people and should be read in full.

Quality statement

Children and young people (aged 0–24 years) with cancer are assessed for potential future fertility problems and advised about their options for fertility preservation before treatment is started.

Rationale

The late effects of cancer treatment are well-recognised and involve most organ systems. Approximately 15% of patients have a high risk of future fertility problems because of their cancer treatment. Children and young people with cancer and their parents or carers should have the risks discussed with them and be advised about their options for fertility preservation before cancer treatment starts.

Quality measures

Structure
Evidence of local arrangements to ensure that children and young people (0–24 years) with cancer are assessed for potential future fertility problems and advised about their options for fertility preservation before treatment is started.
Data source: Local data collection.
Process
The proportion of children and young people (aged 0–24 years) with cancer who are assessed for potential future fertility problems and advised about their options for fertility preservation before treatment is started.
Numerator – the number of people in the denominator who are assessed for potential future fertility problems before treatment and are advised about their options for fertility preservation.
Denominator – the number of children and young people (aged 0–24 years) diagnosed with cancer.
Data source: Local data collection.

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

Service providers ensure that processes are in place for children and young people (aged 0–24 years) with cancer to be assessed for potential future fertility problems and advised about their options for fertility preservation before treatment for cancer is started.
Healthcare professionals ensure that children and young people (aged 0–24 years) with cancer are assessed for potential future fertility problems before treatment for cancer is started and are advised about their options for fertility preservation.
Commissioners ensure they commission services that assess children and young people (aged 0–24 years) with cancer for potential future fertility problems before they start cancer treatment and advise them about their options for fertility preservation.

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

Children and young people with cancer have the risk of future fertility problems caused by their cancer or its treatment assessed before their treatment is started, and are given advice about their options for freezing some sperm, eggs or embryos for use at a later date (called cryopreservation).

Source guidance

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Factors to take into account when deciding whether to have PCV or radiotherapy first for management of anaplastic oligodendroglioma

PCV first
Radiotherapy first
Overall survival
No clinically important difference.
No clinically important difference.
Progression-free survival
No clinically important difference.
No clinically important difference.
Fertility preservation
Trying to preserve fertility may cause a delay in the start of treatment.
Allows additional time for fertility preservation without delaying treatment.
Planning treatment around important life events
Initially much less contact with the health system, but potentially more fatigue.
Harder to give a precise date for when radiotherapy will start, as people's reaction to chemotherapy is less predictable.
Initially much more contact with the health system: daily visits to radiotherapy department lasting several weeks.
Timing of start of chemotherapy much more predictable.
The following recommendations are from NICE technology appraisal guidance on carmustine implants and temozolomide for the treatment of newly diagnosed high-grade glioma.
Temozolomide and carmustine implants have been appraised separately for the treatment of newly diagnosed high-grade glioma. On the basis of the evidence presented to the Committee, no recommendation can be made regarding the sequential use of these treatments for newly diagnosed high-grade glioma.

Temozolomide

Temozolomide, within its licensed indications, is recommended as an option for the treatment of newly diagnosed glioblastoma multiforme (GBM) in patients with a World Health Organization (WHO) performance status of 0 or 1.

Carmustine implants

Carmustine implants, within their licensed indications, are recommended as an option for the treatment of newly diagnosed high-grade glioma only for patients in whom 90% or more of the tumour has been resected.
Treatment with carmustine implants should be provided only within specialist centres that in general conform to guidance in 'Improving outcomes for people with brain and other central nervous system tumours' (NICE cancer service guidance 2006), and should be supervised by specialist neurosurgeons who spend at least 50% of their clinical programmed activities in neuro-oncological surgery. The specialists should also have access to:
  • multidisciplinary teams to enable preoperative identification of patients in whom maximal resection is likely to be achievable
  • magnetic resonance imaging (MRI) to enable preoperative identification of patients in whom maximal resection is likely to be possible, and
  • image-directed technology, such as neuronavigation, for use intraoperatively to assist the achievement of maximal resection.
Carmustine implants are not recommended for the treatment of newly diagnosed high-grade glioma for patients in whom less than 90% of the tumour has been resected.
NICE has written information for the public on carmustine and temozolomide.

Imaging

The evidence indicated that standard structural MRI is useful in distinguishing high-grade from low-grade glioma. The committee noted that this knowledge will inform management. Based on their experience, the committee recommended a protocol that they defined as a minimum standard for imaging acquisition.
No evidence was found on more advanced MRI techniques. However, the committee agreed that in their experience such techniques can be useful for assessing malignant features of a tumour – in particular, for ensuring that high-grade tumours are not misdiagnosed as low-grade tumours, which could have serious consequences for people who receive suboptimal management as a result. However the committee explained that a specialist multidisciplinary team would be needed to interpret features of the scan and decide management, even if advanced techniques were used.

How the recommendations might affect practice

Currently, various imaging strategies are used in different centres and depending on the person's circumstances. These recommendations aim to reduce variation in practice, and ensure that images obtained at different sites and using different equipment can be more accurately compared. Some centres may need to change their imaging protocols. This might increase or reduce costs depending on the imaging protocols which are currently in place.

Investigating suspected brain metastases

In the absence of evidence, the committee recommended standard structural MRI based on their experience, because it is important to establish the exact number of metastases in the brain, which can then guide further treatment. The committee described how failing to establish this could be dangerous. Extracranial imaging, biopsy of the extracranial disease (where indicated) and performing all imaging before multidisciplinary team discussions should ensure that all necessary information is available so that appropriate decisions are made and delays in treatment avoided.

How the recommendations might affect practice

The recommendations reinforce current best practice and should reduce delays to local intracranial treatment.

Care needs of people with brain tumours

Based on the evidence and their own experience, the committee determined that people with brain tumours have very specific needs that are often not met. In particular, they highlighted ways in which the care needs of people with brain tumours differ from those of people with other types of cancer, such as the impact on the person's sense of identity and legal requirements related to driving. Losing the ability or legal right to drive can have a profound effect on the patient's independence, employment status and self-esteem. The committee's aim was to improve the support and information offered to people with brain tumours.
The committee described how the care needs of people with brain tumours were often more complex than could be considered in a single guideline. In particular, young people, people wishing to preserve their fertility, and people nearing the end of their life have especially complex needs. In order to address these needs, the committee signposted to existing NICE guidance in the specific area.

How the recommendations might affect practice

The recommendations should improve care for both people living with brain tumours and their relatives and carers. It is likely that there will be a short-term resource impact in some areas, as supportive care for people with brain tumours is currently variable, with very little support available in some areas.

Investigating suspected meningioma

Evidence indicated that standard structural MRI is useful in distinguishing high-grade from low-grade glioma, and the committee agreed that it is appropriate to extrapolate from this evidence to a belief that MRI can be used to distinguish meningioma from healthy brain tissue. In the committee's experience, CT scans can be more accurate than MRI for assessing meningioma with bone involvement.

How the recommendations might affect practice

Currently, various imaging strategies are used depending on the centre and the person's circumstances. These recommendations aim to reduce variation in practice, and ensure that images obtained at different sites and using different equipment can be more accurately compared. Some centres may need to change their imaging protocols as a result, but this should not require the purchase of additional equipment.

Factors to take into account when deciding on frequency of follow-up for people with glioma

Possible advantages of more frequent follow-up
Possible disadvantages of more frequent follow-up
May identify recurrent disease earlier which may increase treatment options or enable treatment before people become symptomatic.
There is no definitive evidence that identifying recurrent disease early improves outcomes.
May help provide information about the course of the illness and prognosis.
May increase anxiety if changes of uncertain significance are detected on imaging.
Some people can find more frequent imaging and hospital contact reassuring.
Provides an opportunity to identify patient or carer needs (such as psychosocial support and late side effects of treatment).
Some people can find more frequent imaging and hospital contact burdensome and disruptive – they feel their life revolves around their latest scan.
There may be a financial cost from taking time off work and travelling to appointments.
More imaging and follow-up is resource intensive for the NHS.

Managing meningioma after surgery or when surgery is not an option or has been declined

Based on limited evidence and their clinical experience, the committee concluded that management of this group of meningiomas will depend on the type of meningioma. They noted that evidence for 1 grade of meningioma could not normally be used to suggest best management for another grade. Therefore the committee made recommendations for each grade of meningioma separately, using evidence if this was available and their judgement if it was not. The committee identified that management could be more conservative if the tumour grade was lower and initial resection more complete, and should be more aggressive if the tumour grade was higher or initial resection more partial.
The committee agreed that the 3 management options – further radiotherapy, surgery and active monitoring – had different balances of benefits and harms in different situations. However they also agreed that serious harm could be done to a person with a tumour if they were over- or under-treated given the risk profile of their tumour, and so made recommendations according to this risk. For example, for a low-grade almost completely-resected tumour (grade I, Simpson 2 excision), radiotherapy or further surgery could expose the person to risk of harm for no expected clinical gain.
Based on limited evidence, the committee made recommendations on how to deliver radiotherapy or radiosurgery where this was appropriate. They used their experience to highlight features of the tumour or preferences of the person that might help select the most appropriate radiotherapy or radiosurgery modality, and explained that the best results would come through minimising the dose of the radiation delivered to healthy brain tissue while maximising the chance of local control.
The committee were unable to find evidence comparing different timings of radiotherapy in incompletely excised grade I meningioma. As the disease is slow growing it can be difficult to assess the risk of immediate side effects from treatment compared to the longer term benefits of tumour control. Therefore the committee made a research recommendation to investigate this topic.

How the recommendations might affect practice

The recommendations reflect standard practice in many centres, and should make treatment more consistent.
An appointment with an oncologist for all people who may have radiotherapy is not currently standard practice. However, for most people this is likely to mean a change in the timing of their first appointment with an oncologist, rather than many more people having oncologist appointments.

Managing brain metastases

The committee made recommendations based on the available evidence and their judgement. They described how features of brain metastases, including the number and volume (which is important for establishing prognosis), should be evaluated before starting treatment, and decisions about treatment made on the basis of these features and the person's preferences.
The committee described how systematic anti-cancer therapies were widely used in the management of other types of metastases, and therefore they might be expected to work for brain tumours. In the absence of evidence, the committee recommended considering systematic anti-cancer therapies on the basis of their clinical experience. Whether or not these therapies should be given depends on the type of metastasis: if it is not likely to respond then the side effects would not justify giving the therapy, whereas if the metastasis was likely to respond then the therapy was likely to be beneficial.
Evidence indicated that surgery, stereotactic radiosurgery and stereotactic radiotherapy are effective for treating a single brain metastasis, but there was no evidence to recommend 1 technique over the other. There was some evidence that irradiation of the cavity site improved local control, so the committee recommended it on the basis that improving local control should improve quality of life.
For people with multiple brain metastases, the committee described how treatment options are more variable, and that resection, stereotactic radiosurgery, stereotactic radiotherapy and whole-brain radiotherapy could all be considered in certain circumstances.
The committee recommended that neither memantine nor concurrent systemic therapy should be offered to enhance the efficacy of whole-brain radiotherapy, on the basis of evidence of no benefit and a potential risk of harm. However there were biological reasons to think these treatments might be beneficial in some settings, so the committee agreed these therapies could be offered in the context of a clinical trial to investigate this.

How the recommendations might affect practice

Current practice varies greatly between centres. Some of the variation reflects clinically relevant factors such as expertise in a particular technique or the patient population. The recommendations should help to standardise care and prevent some harmful and wasteful practices from continuing. Economic modelling identified that the recommendations will likely increase costs, but the committee believed that this was still an efficient use of NHS resources, as the improvement to quality of life was significant.

Using molecular markers

Molecular markers are an emerging and important area in the treatment of brain tumours. The committee looked for evidence on these markers but did not find any. However, they noted that there are some molecular markers for which the evidence of benefit if tested is overwhelming, as reported in studies identified in searches for other review questions. This applies in particular for MGMT promoter methylation and TERT promoter mutations in IDH-wildtype glioma, although the committee agreed the evidence was of a higher quality in the first case than the second. The committee agreed that even these markers are not being consistently tested for and that testing should be standardised. Therefore they made recommendations based on their knowledge and experience, highlighting the WHO classification, to ensure that all centres follow a consistent process for assessing and interpreting information on molecular markers. This was important, since failure to consistently report molecular markers can mislead clinicians or limit treatment options.

How the recommendations might affect practice

As testing for molecular markers is relatively new, practice can vary widely and this is to be expected. In principle there should not be a major change, although the time taken to implement the new molecular tests will vary significantly between centres.

Neurorehabilitation

No evidence was found for this topic. Based on their experience, the committee agreed that neurological rehabilitation is likely to be suitable for many people with brain tumours. Given that neurological rehabilitation is time consuming (especially if the person with a tumour lives a long way from the rehabilitation centre) and sometimes not appropriate, the committee agreed that assessment should be carried out at every stage of diagnosis and follow-up to identify which, if any, forms of rehabilitation are suitable for the person. The aim of the recommendations is to ensure that neurological rehabilitation is considered at every stage of treatment and follow-up.

How the recommendations might affect practice

There is currently variation in practice in assessing whether people with a brain tumour need neurological rehabilitation. Some of this reflects the availability of neurological rehabilitation services. The recommendations reinforce current best practice, and will mean a change in practice in some areas, including where assessment is 'ad hoc' rather than systematic.
People with a brain tumour make up a small percentage of people referred for neurological rehabilitation, so only a small increase in demand on resources is expected. There should not be any extra training needs because professionals already have the knowledge and skills to provide the services.

Possible regular clinical review schedule for people with glioma depending on grade of tumour

Years after end of treatment:
0 to 1
1 to 2
2 to 3
3 to 4
[5 to 10}
>10 (for the rest of life)
Grade I
Scan at 12 months, then:
  • consider discharge if no tumour visible on imaging unless completely resected pilocytic astrocytoma
  • consider ongoing imaging at increasing intervals for 15 years for completely resected pilocytic astrocytoma
  • consider if ongoing imaging is needed at a rate of once every 1 to 3 years for the rest of the person's life if the tumour is visible on imaging
Grade II 1p/19q non-codeleted, IDH mutated
Scan at 3 months, then every 6 months
Annually
Every 1 to 2 years
Consider ongoing imaging every 1 to 2 years
Grade II 1p/19q codeleted
Grade III 1p/19q codeleted
Grade II IDH-wildtype
Every 3 to 6 months
Every 6 to 12 months
Annually
Consider ongoing imaging every 1 to 2 years
Grade III 1p/19q non-codeleted
Grade IV (Glioblastoma)
Consider adjuvant stereotactic radiosurgery/radiotherapy to the surgical cavities for people with 1 to 3 brain metastases that have been resected.

Resection techniques

There was evidence that 5-ALA, intraoperative MRI and diffusion tensor imaging could improve either the extent or safety of resection (particularly the preservation of neurological function). The committee noted that a combination of techniques might be needed to optimise both the extent and safety of resection for a particular surgical plan. The committee concluded that the evidence for MRI could be generalised to intraoperative ultrasound on the basis of their clinical experience, and therefore that clinicians should be able to choose either technique depending on availability.
The evidence for awake craniotomy was equivocal (non-significant differences compared with surgery under general anaesthesia), therefore from the evidence it was not possible to conclude that awake craniotomy would benefit all people with glioma. This is in line with the committee's clinical experience that some people benefit from the procedure (in terms of preserving language, motor and visual function) but others are harmed – particularly from psychological effects, which act as a contraindication to awake craniotomy. The committee described how better preoperative procedures could reduce the number of people distressed by the procedure.

How the recommendations might affect practice

Some techniques recommended by the committee require a very high level of intraoperative skill, and this might have resource implications for hospitals recruiting people with these specialist skills. There is significant variation in the current provision of psychological support for people before and during awake craniotomy, and implementing this could carry a high cost to an individual unit.
If a unit does not have access to intraoperative ultrasound or MRI, the cost of acquiring this equipment could be substantial (MRI is relatively expensive, ultrasound is relatively cheap). However the committee concluded that most units should have access to one or the other already. Therefore the only resource impact would be if a unit currently using intraoperative ultrasound decided that the additional evidence for preservation of neurological function in intraoperative MRI justified the cost of switching machines. However, the committee thought this was unlikely to happen.
Using 5-ALA is associated with a high cost, and 5-ALA-guided surgery needs a non-standard fluorescence-detecting microscope. Therefore the resource impact of this recommendation is likely to be high in all settings, and very high in settings without access to a fluorescence-detecting microscope. The anticipated resource impact of this recommendation is greater than £1 million per year.
Do not offer whole-brain radiotherapy to people with:
  • non-small-cell lung cancer and
  • brain metastases that are not suitable for surgery or stereotactic radiosurgery/radiotherapy and
  • a Karnofsky performance status of under 70.

Surveillance for the late-onset side effects of treatment

No evidence was found for this topic. Some people experience late effects after treatment for a brain tumour. With the possible exception of stroke risk it is unknown if these late effects can be prevented, but the committee agreed that any negative impact can be managed through clinical vigilance and referral into appropriate specialist monitoring pathways. The committee explained that it was important to consider referral for anyone at risk of late effects – not just those at 'high' risk – but that there may be no value in such a referral overall in lower risk groups.

How the recommendations might affect practice

The recommendations should not significantly alter practice, as they reflect common clinical practice.

Brain metastases follow-up

In the absence of evidence, the committee made recommendations based on their clinical experience. They recommended regular clinical review as the only plausible way of identifying and potentially managing recurrence or changing symptoms. They also recommended the review schedule take into account all of the person's relevant characteristics, including grade of tumour. As this is quite difficult to work out, the committee suggested a schedule of clinical reviews that is likely to be beneficial for a 'typical' person, which can be amended as needed to take into account individual variation. The committee did not uncover evidence on who should do the follow-up and so did not make a recommendation on this topic as it would vary according to clinical need, but discussed how it could be – for example – the local oncologist, neuro-oncologist, neurologist, neurosurgeon, clinical nurse specialist, or GP.
As regular clinical review should include imaging, based on their experience the committee suggested an MRI sequence which they believed would be suitable to monitor for recurrence. They discussed how advanced MRI techniques might be valuable, but as these techniques are time consuming and difficult to interpret the committee concluded they should only be recommended under certain circumstances where extra information was likely to substantially alter treatment plans. The committee recommended that any change in neurological signs or symptoms (which would include changes in behavioural, emotional and psychological signs and symptoms) be treated as a sign of a potential change to the tumour, and therefore recommended clinical review outside the usual schedule in order to investigate this.

How the recommendations might affect practice

The recommendations are in line with current best practice, and should standardise practice. They are unlikely to cause a significant increase in resource use, but there may be some additional costs or changes in service configuration if practice differs in a particular centre.
The imaging sequences are recommended on the basis of evidence for the appropriate sequences for initial diagnosis, and so might not be the standard sequence for follow-up in all centres. As a result, adopting the recommended sequences might create some additional workload for some centres. However the recommendations for exact schedules are examples based on consensus in the committee, and there is therefore flexibility for centres to adapt these to their own models, limiting resource impact.

Meningioma follow-up

In the absence of evidence, the committee made recommendations based on their clinical experience. They recommended regular clinical review as the only plausible way of identifying and potentially managing recurrence or changing symptoms. They also recommended the review schedule take into account all of the person's relevant characteristics, including grade of tumour. As this is quite difficult to work out, the committee suggested a schedule of clinical reviews that is likely to be beneficial for a 'typical' person, which can be amended as needed to take into account individual variation. The committee did not uncover evidence on who should do the follow-up and so did not make a recommendation on this topic as it would vary according to clinical need, but discussed how it could be – for example – the local oncologist, neuro-oncologist, neurologist, neurosurgeon, clinical nurse specialist, or GP.
As regular clinical review should include imaging, based on their experience the committee suggested an MRI sequence which they believed would be suitable to monitor for recurrence. They discussed how advanced MRI techniques might be valuable, but as these techniques are time-consuming and difficult to interpret the committee concluded they should only be recommended under certain circumstances where extra information was likely to substantially alter treatment plans. The committee recommended that any change in neurological signs or symptoms (which would include changes in behavioural, emotional and psychological signs and symptoms) be treated as a sign of a potential change to the tumour, and therefore recommended clinical review outside the usual schedule in order to investigate this.

How the recommendations might affect practice

The recommendations are in line with current best practice, and should standardise practice. They are unlikely to cause a significant increase in resource use, but there may be some additional costs or changes in service configuration if practice differs in a particular centre.
The imaging sequences are recommended on the basis of evidence for the appropriate sequences for initial diagnosis, and so might not be the standard sequence for follow-up in all centres. As a result, adopting the recommended sequences might create some additional workload for some centres. However the recommendations for exact schedules are examples based on consensus in the committee, and there is therefore flexibility for centres to adapt these to their own models, limiting resource impact.

Treatment choices after surgery or if surgery was not possible for different kinds of meningioma

Grade
Extent of surgery
Recurrent
Completely excised (Simpson 1 to 3)
Incompletely excised (Simpson 4 to 5)
No excision (radiological only diagnosis)
I
Consider further surgery (if possible), radiotherapy, or active monitoring.
Consider active monitoring or radiotherapy.
Consider further surgery or radiotherapy (if not previously used).
II
Offer a choice between active monitoring and radiotherapy.
Consider further surgery (if possible). Offer radiotherapy if surgery is not possible including if the person declines surgery, or if the tumour is incompletely excised afterwards.
Consider further surgery and offer radiotherapy (if not previously used).
III
Offer radiotherapy.
Consider further surgery (if possible) and offer radiotherapy.
Consider further surgery and offer radiotherapy (if not previously used).

Factors to take into account when deciding on radiotherapy as treatment for a surgically treated meningioma

Radiotherapy
No radiotherapy
Control of tumour
There is evidence that radiotherapy is effective in the local control of a tumour.
Receiving no radiotherapy means the tumour may continue to grow.
Risk of developing subsequent symptoms
Controlling the tumour will reduce the risk of developing symptoms from the tumour in the future.
If the tumour grows, it can cause irreversible symptoms such as loss of vision.
Risk of re-treatment
Less risk of needing second surgery compared with no radiotherapy.
Higher risk of needing second surgery compared with radiotherapy.
If the tumour has progressed, then the surgery might be more complex.
If the tumour has progressed, then not all radiotherapy techniques may be possible.
Early side effects of treatment
Early side effects from radiotherapy can include:
  • fatigue
  • hair loss
  • headache
  • nausea
  • seizures
  • skin irritation.
No side effects from treatment.
Late side effects of treatment
Late side effects from radiotherapy can include:
  • effect on cognition
  • risk of stroke
  • risk of radionecrosis
  • risk of second tumours
  • cranial nerve effects
  • hypopituitarism
  • cataracts.
No side effects from treatment.
Management of side effects
Increased use of steroids to manage side effects.
No side effects from treatment.

Initial management of low-grade glioma

There was evidence that optimal resection of a large percentage of the tumour improved survival for people with low-grade glioma. The committee noted that it is sometimes not appropriate to offer maximal safe resection (for example, if the balance of risks and benefits favours not resecting all areas) and that a specialist surgical team should look at the value of doing an operation given its safe extent. They agreed that biopsy should be considered in these cases, based on limited evidence showing improved overall survival after biopsy compared with active monitoring. However, the committee also concluded that some tumours were of such limited risk that the risks of surgery outweighed the possible gain of biopsy or resection.
The committee described how there was no evidence for immediate intervention, but that intervention should not be delayed due to the probability that surgical resection would have benefit for the person with the tumour. They therefore recommended intervention within 6 months, to allow for time to discuss treatment options with the person with the tumour. This also to allows for the possibility of a second imaging sequence to be done later to look for progression and to assess for symptom change, as the committee also recognised that a proportion of low-grade gliomas have unfavourable gene profiles (for example, IDH wild-type) that make them more like high-grade tumours from a prognostic perspective.
A small number of people might have had initial treatment before it was standard practice to save a tissue sample for biopsy, and these people would currently be actively monitored. Based on their experience the committee agreed that these people may not need further surgery as long as their condition is stable (that is, they are not showing radiological or clinical disease progression).

How the recommendations might affect practice

The recommendations are likely to change practice at some centres, and remove unnecessary variation. There are currently differences between centres in which molecular diagnoses are performed and in treatment of very low-risk low-grade tumours. This is partly because low-grade gliomas may be managed by non-expert surgical teams.
The recommendation about the management of low-grade gliomas that have been managed but then progress is unlikely to substantially change practice, as management would be largely unchanged.

Further management of low-grade glioma

There was evidence that PCV chemotherapy after radiotherapy improved overall survival and progression-free survival compared with radiotherapy alone. The committee discussed how the evidence for the exact regime was complex, and used their judgement to recommend possible sequence and dose. In addition, the committee noted that there are some circumstances where radiotherapy and PCV might not be appropriate (particularly for the very lowest-concern and highest-concern low-grade tumours) and made recommendations based on their experience in these cases.
The committee included approximate age cut-offs based on evidence showing that treatment improved survival in people aged around 40 or over with or without residual tumour, and their clinical judgement that treatment would be unlikely to be of benefit for people aged around 40 or under without residual tumour.
The committee found no evidence on the treatment of IDH-wildtype grade II glioma. They determined that management of this type of glioma was likely to be different from other low-grade glioma, as IDH-wildtype grade II glioma behaves more like a high-grade glioma. The committee therefore made a research recommendation on whether treating this tumour type more like a grade II glioma or grade IV glioma was most beneficial.

How the recommendations might affect practice

These recommendations aim to standardise practice. They will probably result in the same amounts of chemotherapy and radiotherapy being given, but these treatments will be more precisely targeted and it is possible that they will be given earlier. This would result in more people requiring long-term treatment for the side effects of radiation and chemotherapy. More people are likely to have active monitoring alone, which is not likely to create a resource impact.

Factors to take into account when deciding on frequency of follow-up for people with meningioma

Possible advantages of more frequent follow-up
Possible disadvantages of more frequent follow-up
May identify recurrent disease earlier which may increase treatment options or enable treatment before people become symptomatic.
There is no definitive evidence that identifying recurrent disease early improves outcomes.
May help provide information about the course of the illness and prognosis.
May increase anxiety if changes of uncertain significance are detected on imaging.
Some people can find more frequent imaging and hospital contact reassuring.
Provides an opportunity to identify patient or carer needs (such as psychosocial support and late side effects of treatment).
Some people can find more frequent imaging and hospital contact burdensome and disruptive – they feel their life revolves around their latest scan.
There may be a financial cost from taking time off work and travelling to appointments.
More imaging and follow-up is resource intensive for the NHS.

Possible regular clinical review schedule depending on grade of tumour, for people with meningioma

Years after end of treatment
0 to 1
1 to 2
2 to 3
3 to 4
4 to 5
5 to 6
6 to 7
7 to 8
8 to 9
>9 (for the rest of life)
Grade I: no residual tumour*
Scan at 3 months
Annually
Once every 2 years
Consider discharge
Grade I: residual tumour*
Scan at 3 months
Annually
Once every 2 years
Consider discharge
Grade I: after radiotherapy
Scan 6 months after radiotherapy
Annually
Once every 2 years
Consider discharge
Grade II
Scan at 3 months, then 6 to 12 months later
Annually
Once every 2 years
Consider discharge
Grade III
Every 3 to 6 months
Every 6 to 12 months
Annually
Asymptomatic incidental meningioma
Scan at 12 months. If no change consider discharge or scan at 5 years.
*The presence of any residual tumour can only be established after the first scan at 3 month.s

Managing grade III glioma in people with a Karnofsky performance status of 70 or more following surgery

The committee considered evidence for grade III and grade IV glioma separately.
Based on randomised control trial evidence, the committee recommended radiotherapy and either PCV or temozolomide chemotherapy, depending on tumour subtype and performance status, for people with grade III glioma.

How the recommendations might affect practice

Adjuvant PCV for treating codeleted grade III glioma is standard practice, but adjuvant temozolomide for non-codeleted grade III gliomas is a change in practice. However, some centres may already have started to adopt this as standard care, since the results of the study supporting this treatment were made publicly available in 2016.

Factors to take into account when deciding between surgery and stereotactic radiosurgery or radiotherapy as treatment for a single brain metastasis

Surgery
Stereotactic radiosurgery / radiotherapy
Overall survival
No clinically important difference
No clinically important difference
Risk of needing additional treatment
Risk that stereotactic radiosurgery / radiotherapy may be needed in any case.
Risk that surgery may be needed in any case. However, has higher local control rate than surgery (meaning surgery is less likely after radiotherapy than the other way around).
Key benefit of treatment
Has more rapid control of symptoms.
Additionally, surgery allows for obtaining an up-to-date pathological diagnosis which may guide future treatment, making it more effective.
Has a higher local control rate than surgery, meaning more treatment is less likely to be needed.
Additionally, is an outpatient treatment and does not need a general anaesthetic.
Key risks of treatment
Surgical procedures carry known risks that vary depending on the person and the tumour. These include infection, stroke, a prolonged hospital stay or death.
Surgery is more painful than radiotherapy during recovery.
Radiation carries the risk of delayed effects such as radionecrosis, which might need surgical resection.
There is an increased risk of seizures with this technique, although this appears to mostly affect people who have pre-existing epilepsy.
Steroid use
Early reduction in steroid dose.
Likely to need steroids for longer, and at a higher dose. Steroids have significant side effects when used long-term, such as changes in mood, heart problems and changes in body fat.
Planning treatment around important life events
The wound from the surgery may affect the ability to carry out certain activities in the short term, such as air travel and sport.
The cosmetic appearance of the wound from surgery may be important to some people, and should be discussed.
Some people find the techniques used in radiotherapy challenging or upsetting, especially the equipment which immobilises the head. This is especially likely to be true for people with claustrophobia.
Other considerations
Radiotherapy can reach some areas of the brain that surgery cannot, and might be the only appropriate technique for certain tumour types.

Treatments not to offer or that evidence does not support for grade III glioma

The committee considered evidence for grade III and grade IV glioma separately.
Based on the available evidence, the committee recommended that some treatments should not be offered because they were harmful. They also agreed, based on their experience, that it would be useful for healthcare professionals to tell people with glioma that no evidence had been found to indicate that certain treatments are beneficial.

How the recommendations might affect practice

Adjuvant PCV for treating codeleted grade III glioma is standard practice, but adjuvant temozolomide for non-codeleted grade III gliomas is a change in practice. However, some centres may already have started to adopt this as standard care, since the results of the study supporting this treatment were made publicly available in 2016.

Managing grade IV glioma

The committee considered evidence for grade III and grade IV glioma separately.
The committee saw some evidence demonstrating improved overall survival in some groups of people with grade IV glioma who had radiotherapy with concurrent and adjuvant temozolomide (compared with radiotherapy alone). However, based on their clinical experience they were unsure that these results could be generalised to all people with grade IV glioma, so suggested a range of possible treatments that can be considered for other groups, depending on the exact clinical characteristics of the tumour.
Approximate age cut-offs for people with grade IV glioma were specified by the committee based on evidence that a radiotherapy dose of 40 Gy did not result in lower survival in people aged around 70 or over compared with a 60 Gy dose. Therefore a lower radiotherapy dose is likely to cause fewer side effects without compromising clinical effectiveness for this group.
The committee were aware that the prognosis of people with a grade IV glioma and a low performance status was poor, and recommended palliative care be considered. However the committee did not find any evidence on whether earlier or later palliative care was most beneficial for people who might need it. They therefore made a research recommendation on this topic, with the aim of finding out the point in the treatment pathway when it would be most beneficial for people with this type of glioma to have palliative care.

How the recommendations might affect practice

For younger people with a grade IV glioma and a good performance status, a course of radiotherapy with concurrent and adjuvant temozolomide is standard care. However, for people aged around 70 and over, particularly those with a glioma with methylated MGMT, the use of concurrent and adjuvant temozolomide with 15 fractions of radiotherapy is a change of practice that will probably result in more people being treated. This is a relatively small group of people, and so the recommendation is unlikely to have a significant resource impact.

Potential benefits and harms of whole-brain radiotherapy for multiple metastases

Whole-brain radiotherapy
No whole-brain radiotherapy
Overall survival
No clinically important difference
No clinically important difference
Quality of life
Short-term deterioration in quality of life because of treatment.
No impact on quality of life because of treatment, but deterioration because of the disease progression.
Potential benefits
Can stabilise or reduce the brain metastases.
Brain metastases may continue to grow.
Side effects
Temporary hair loss and fatigue. Potential for accelerated cognitive loss because of radiotherapy.
Potential for cognitive loss because of disease progression.
Time commitment
Requires 5 to 10 hospital visits.
No time commitment.
Other considerations
People with non-small-cell lung cancer will not benefit from treatment if their overall prognosis is poor.

Factors to take into account when deciding on frequency of follow-up for people with brain metastases

Possible advantages of more frequent follow-up
Possible disadvantages of more frequent follow-up
May identify recurrent disease earlier which may increase treatment options or enable treatment before people become symptomatic.
There is no definitive evidence that identifying recurrent disease early improves outcomes.
May help provide information about the course of the illness and prognosis.
May increase anxiety if changes of uncertain significance are detected on imaging.
Some people can find more frequent imaging and hospital contact reassuring.
Provides an opportunity to identify patient or carer needs (such as psychosocial support and late side effects of treatment).
Some people can find more frequent imaging and hospital contact burdensome and disruptive – they feel their life revolves around their latest scan.
There may be a financial cost from taking time off work and travelling to appointments.
More imaging and follow-up is resource intensive for the NHS.

Treatments not to offer or that evidence does not support for grade IV glioma

Based on the available evidence, the committee recommended that certain treatments should not be offered. This included tumour treating fields (TTF) based on published health economic evidence that they are not an efficient use of NHS resources. They also agreed, based on their clinical experience, that it would be useful for healthcare professionals to tell people with glioma that no evidence had been found to suggest that certain treatments are beneficial.

How the recommendations might affect practice

For younger people with a grade IV glioma and a good performance status, a course of radiotherapy with concurrent and adjuvant temozolomide is standard care. However, for people aged around 70 and over, particularly those with a glioma with methylated MGMT, the use of concurrent and adjuvant temozolomide with 15 fractions of radiotherapy is a change of practice that will probably result in more people being treated. This is a relatively small group of people, and so the recommendation is unlikely to have a significant resource impact.

Possible regular clinical review schedule for people with brain metastases

Years after end of treatment:
0 to 1
1 to 2
2 onwards
Brain metastases
Every 3 months
Every 4 to 6 months
Annually

Managing recurrent grade III or IV glioma

Based on the available evidence, the committee recommended that treatment options for people with recurrent glioma should include temozolomide, PCV and single-agent CCNU (lomustine). No evidence was found to indicate which of these 3 options is likely to lead to the best outcomes, and on the basis of their clinical experience the committee concluded that the choice of treatment should take several factors into account, including the individual features of the tumour and the preferences of the person. The committee also highlighted the possibility of considering supportive care alone.

How the recommendations might affect practice

These recommendations reflect standard treatment for recurrent high-grade glioma, and therefore should not represent a substantial change in practice.

Treatments not to offer or that evidence does not support for recurrent grade III or IV glioma

Based on the available evidence, the committee recommended that certain treatments should not be offered. This included tumour treating fields (TTF) on the basis of evidence of some clinical benefit but indirect published health economic evidence, in people with newly diagnosed high-grade glioma, that they are not cost-effective. They also agreed, based on their clinical experience, that it would be useful for healthcare professionals to tell people with glioma that no evidence had been found to suggest that certain treatments are beneficial.

How the recommendations might affect practice

These recommendations reflect standard treatment for recurrent high-grade glioma, and therefore should not represent a substantial change in practice.

Glioma follow-up

In the absence of evidence, the committee made recommendations based on their clinical experience. They recommended regular clinical review as the only plausible way of identifying and potentially managing recurrence or changing symptoms. They also recommended the review schedule take into account all of the person's relevant characteristics, including grade of tumour. As this is quite difficult to work out, the committee suggested a schedule of clinical reviews that is likely to be beneficial for a 'typical' person, which can be amended as needed to take into account individual variation. The committee did not uncover evidence on who should do the follow-up and so did not make a recommendation on this topic as it would vary according to clinical need, but discussed how it could be – for example – the local oncologist, neuro-oncologist, neurologist, neurosurgeon, clinical nurse specialist, or GP.
As regular clinical review should include imaging, based on their experience the committee suggested an MRI sequence which they believed would be suitable to monitor for recurrence. They discussed how advanced MRI techniques might be valuable, but as these techniques are time-consuming and difficult to interpret the committee concluded they should only be recommended under certain circumstances where extra information was likely to substantially alter treatment plans. The committee recommended that any change in neurological signs or symptoms (which would include changes in behavioural, emotional and psychological signs and symptoms) be treated as a sign of a potential change to the tumour, and therefore recommended clinical review outside the usual schedule in order to investigate this.
The committee believed that a dedicated supportive care clinic could improve outcomes for people with low-grade glioma, but did not find any evidence on this. Therefore they made a research recommendation on improving the long-term outcomes of people with low-grade glioma.

How the recommendations might affect practice

The recommendations are in line with current best practice, and should standardise practice. They are unlikely to cause a significant increase in resource use, but there may be some additional costs or changes in service configuration if practice differs in a particular centre.
The imaging sequences are recommended on the basis of evidence for the appropriate sequences for initial diagnosis, and so might not be the standard sequence for follow-up in all centres. As a result, adopting the recommended sequences might create some additional workload for some centres. However the recommendations for exact schedules are examples based on consensus in the committee, and there is therefore flexibility for centres to adapt these to their own models, limiting resource impact.

Glossary

regular clinical and radiological review of a person with a brain tumour or brain metastases who are not currently having treatment for their cancer
(dysembryoplastic neuroepithelial tumour)
outpatient review of the person with a brain tumour or brain metastases at a planned interval from the previous visit in order to assess symptoms and care needs, to provide support and treatment and to perform imaging when appropriate
(procarbazine, CCNU (lomustine) and vincristine)
(defined as T2 weighted, FLAIR, DWI series and T1 pre- and post-contrast volume)

Paths in this pathway

Pathway created: July 2018 Last updated: July 2018

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