Core - Clinical Nurse Specialist + Risk Factor Assessment

This section contains important data, which will help improve our understanding of the causative risk factors across all tumour sites.

May be up to one occurrence per record (0..1)

Note:

• ‘CR7820 Diabetes Mellitus Indicator’ has been retired in v10 and replaced with ‘CR9070 Diabetes Mellitus Type 1 and Type 2 Indicator’

Clinical Nurse Specialist Indication Code

Record if and when the patient saw an appropriate site-specific clinical nurse specialist. Please read all options to select the most appropriate code.

Notes:

• Y1 could be when either the patient was given the diagnosis of cancer by a consultant (with the Nurse Present) or by the clinical nurse specialist themselves (without a consultant) - clinical nurse specialist practice is becoming more independent and in some tumour sites, it will be the clinical nurse specialist that breaks the bad news to the patient
• Y5 was requested by many clinical nurse specialist teams as their workload is more diverse than originally accounted for, which is required to meet the rising demand for their services to help you assign the correct code - the following 3 expanded explanations have been provided:
  • cancer care coordinators are band 3/4 staff who have been employed to work within clinical nurse specialist teams to undertake a number of duties which do not need to be performed by a clinical nurse specialist including telephone triage, pathway management and in some cases acting as key worker to patients with non-complex disease requiring straight forward management
  • where care coordinators are acting as key workers, they have undergone appropriate communication skills training and have developed specific competencies to ensure they have the skills and knowledge to undertake this role which may include the support of patients at diagnosis
  • cancer care coordinators are recognised members of the multi-disciplinary team and are working under the supervision of the senior clinical nurse specialist, and with the approval of the MDT Lead

Tobacco Smoking Status

This is specifically looking at tobacco smoking only. Specify the current tobacco smoking status of the patient. This data item could be collected at presentation either in outpatients or on the ward.

Tobacco Smoking Cessation

This is specifically looking at tobacco smoking treatments. Specify the tobacco smoking cessation treatment status of the patient. This data item could be collected at presentation either in outpatients or on the ward.

History of Alcohol (Current)

Specify the current history of alcohol consumption for the patient (≤3 months) from date of diagnosis.

History of Alcohol (Past)

Specify the past history of alcohol consumption for the patient (>3 months) from date of diagnosis.

Note:

• these are based on the UK Chief Medical Officers' Alcohol Guideline Review (Jan 2016)

Diabetes Mellitus Type 1 and Type 2 Indicator

This is a new data item in v10, and these are risk factors for many cancers. Record if the patient has a diagnosis of type 1 or type 2 diabetes mellitus? This information will normally be available in the patient record.

Notes:

• the presence of diabetes is an independent risk factor of development of HCC and many other cancers
• in v10 (on the request of clinician’s) we have extended this to allow for the accurate recording of ‘Type 1’ or ‘Type 2’ diabetes

Menopausal Status

This data item is a risk factor for many female cancers.

Numerous current treatment options are different according to the menopausal status of a patient (particularly those presenting with breast cancer).

Physical Activity (Current)

This is to specify the current physical activity level of the patient.

The activity assessment is based on the Physical Activity Vital Sign (PAVS) form, which has been recommended for its utility in clinical practice compared to other measures such as International Physical Activity Questionnaires (IPAQ) and the General Practice Physical Activity Questionnaire (GPPAQ).

An alternative is to use the online ‘quick activity calculator’ version, which is part of the ‘More Minute Conversation’ resource for health professionals on the Moving Medicine website. The following link will take you to the ‘Explore current activity’ tab

This ‘quick activity calculator’ could be incorporated into a local patient administration system or EPR, such as this example in maternity services from the Moving Medicine website.

If you identify someone not achieving the guidance level of physical activity (150 minutes moderate intensity physical activity per week or 75 minutes vigorous intensity physical activity per week), then it is recommended to advise them to increase physical activity even if only by a small amount, by using a brief intervention:

• ‘Moving Medicine’ has consultation guides on how to have good quality conversations with people affected by cancer about their physical activity
  • there are guides for 3 lengths of conversation: 1 minute, 5 minutes and More Minutes
• NICE Guidance also provides advice:
  • Physical activity: brief advice for adults in primary care (PH44 2013)

People affected by cancer can be signposted to resources such as:

• various charities are listed in the ‘More Minutes Conversation’ resource for health professionals on the Moving Medicine website
  • follow this link and go to the ‘Signpost Support Organisations’ tab
• Macmillan Cancer Support’s resources:
  • Physical Activity before treatment webpage
  • Physical Activity after treatment webpage
  • Physical Activity and Cancer booklet
• Cancer Care Map’s directory of cancer support services – search by postcode with the keyword ‘Physical Activity’
• Cancer Research UK - Physically preparing for cancer treatment
• We Are Undefeatable website supporting people to get active whilst living with a health condition (not cancer specific)
• Royal College of Anaesthetists:
  • Fitter Better Sooner (not cancer specific)

Free resources for implementing physical activity interventions across a cancer service including:

• Macmillan Cancer Support resources for professionals:
  • Physical Activity and Cancer: The under-rated wonder drug (2020)
  • Integrating physical activity into cancer care (2020)
  • Sport, physical activity and cancer toolkit (2020)
  • Principles and guidance for prehabilitation within the management and support of people with cancer (2020)
  • Physical activity for people with metastatic bone disease (2020)
  • Physical Activity and Cancer: Ten Top Tips  (2022)
• BMJ Learning’s online course:
  • The health benefits of physical activity: Cancer (2022)
• E-Learning for Health’s:
  • PRosPer online learning programme on prehabilitation and rehabilitation for people living with cancer which includes exercise
• E-learning for Health’s:
  • Physical Activity and Health learning resource (not cancer specific)

Note:

• NHS England is not responsible for the content of external websites. All weblinks are current as of 25 April 2023

This section covers Holistic Needs Assessment and Personalised Care and Support Planning, has been renamed for COSD version 10. Notes on implementation, can be found at the end of this section.

Please read through this whole section as there have been changes to and within data items and coding options compared to COSD version 9. However, the fundamental requirements are still the same as in version 9. For example, to capture whether personalised care and support planning (PCSP) and holistic needs assessments (HNA) are being offered/completed, at which point in the cancer pathway and by which staff group.

Some of the changes were requested by the NHS Cancer Programme and Macmillan Cancer Support to affirm the importance of completing and recording that personalised care and support planning is happening after a holistic needs assessment.

These Holistic Needs Assessment and Personalised Care and Support Planning data items are marked as ‘R – Required’ - while not ‘mandatory’, this means the data items (where applicable) should be submitted as soon as possible but is not required to validate the submitted record.

The COSD dataset is not designed to capture all PCSP and HNA activity for patients. Therefore, please note that, while PCSPs and HNAs may be carried out in any healthcare, social care or community setting, the focus for COSD data capture should be those occurring along the cancer pathway in secondary care settings.

May be multiple occurrences per record (0..*)

HNA/PCSP Staff Role  Choice 1..1

Staff Role - Choice 1

End of Staff Role - Choice 1

Staff Role - Choice 2

End of Staff Role - Choice 2

End of HNA/PCSP Staff Role Choice

The following data items have been retired in v10:

• CR1340 Assessment Completed Date
• CR3150 Assessment Point of Pathway
• CR7910 Staff Role Carrying Out the Assessment
• CR8030 Staff Role Carrying Out the Planning

Assessment Offered

Record whether a PATIENT has been offered an Holistic Needs Assessment (HNA).

This data item CR7900 ‘Assessment Offered’ indicates whether the PATIENT:

• was undecided about whether to have an HNA (code 01)
• declined the offer of an HNA (code 02)
• accepted the offer of having an HNA and completed it (code 03)
• was not offered a HNA for clinical reasons (code 04)
  • for example, where they would not normally be expected to undergo HNA and PCSP due to being on a clinical pathway that deliberately does not include it (for example because the patient will be referred on to another provider who will offer the HNA and PCSP), or
• was offered an HNA but was unable to complete it (code 05)
  • for example, due to cognitive difficulties, imminent end of life, or where they have died after the offer of the assessment but without having the opportunity to complete it

Rationale:

• it is important to capture the offer of personalised care, whether the HNA occurs or not
• there will always be some people for whom it is correct to make the clinical decision to not offer an HNA to, or who, having been offered an HNA, will be unable to complete it
  • for example, being close to end of life, or being referred to another provider
  • this decision will have been made that as part of an individual’s care and it is important to capture this as part of understanding what has happened
• where there is a proper clinical decision to ‘not offer’ HNA, then this gives Trusts the place to record that entirely appropriate decision
• this coding also ensures when the ratio of HNAs to PCSPs is reviewed nationally, there is a more accurate picture

Additional notes to support data recording of CR7900 ‘Assessment Offered’:

• there is currently no formal national definition of what constitutes the ‘offer’ of an HNA
• however, it should be a ‘proactive’ offer, so that the patient’s response is known and can be recorded
• HNAs and PCSPs should be regarded as an opt-out part of care, not opt-in
  • for example, sending a standardised letter or text message that requires the patient to request to have an HNA, should not be recorded as an ‘offer’ of an HNA
• local teams should have an agreed policy and procedure for conducting HNAs and PCSPs and how these are recorded consistently and accurately for patient record and in accordance with the COSD data specification and this document
• HNAs and PCSPs may be requested at any time by the patient:
  • on these occasions, please use the ‘Offered and Accepted’ code (03)
• if the offer of an HNA is not accepted or completed or it is not offered:
  • the data item CR7930 ‘Assessment/Care Plan Date’ must still be completed with the date the assessment was offered for the non-acceptance or non-completion or non-offer of the HNA to have a time stamp and thus be correctly featured in aggregate data reports
  • the data item CR7920 ‘Assessment/Care Plan Status’ does not apply
  • the data item CR7940 ‘Assessment/Care Plan Point of Pathway’ does still apply
  • the data item CR7950 ‘Staff Role Offering the Assessment Pathway’ does still apply
  • the data item CR7960 ‘Staff Role Offering the Planning’ does not apply

Assessment/Care Plan Status

This is a new data item for v10. This data item provides an indication of whether a PATIENT has been offered a Holistic Needs Assessment (HNA) and /or Personalised Care and Support Plan (PCSP) and whether these have been completed.

This data item CR7920 ‘Assessment/Care Plan Status’ captures what happens as part of the HNA and PCSP process once the initial offer of the HNA has been accepted and the assessment completed. If the offer of an assessment is not accepted, or the assessment is not completed, this data item will not apply.

The values in this field will indicate, once the PATIENT has completed the assessment (HNA), that:

• a care plan was not offered (code 01)
• a care plan was offered, but at the time of recording it may not be clear whether the patient will take up the offer of a care plan, for example if they are undecided (code 02)
• a care plan was offered and has been completed (code 03)
• a care plan was offered but the patient has declined a care planning conversation (code 04)
• a care planning conversation could not be completed with the patient (code 05)
  • for example, if the patient has lost capacity, has transferred to another care provider, or has died between the completion of the assessment and the offer of a care plan, or
• a care plan has not been offered on the basis that the individual identified no concerns in completing the assessment (HNA) (code 06).

Note that in some instances the patient may identify no concerns in the HNA, but in further discussion may raise issues which are resolved in a Personalised Care and Support Plan. These should be coded as 03, to indicate that a care plan has been completed.

Assessment/Care Plan Date

This is a new data item in v10. Record the date if:

• a Holistic Needs Assessment or Personalised Care and Support Plan is offered, or
• the date when a decision was made not to offer an assessment for valid clinical reasons as described above
  • if the decision is to not offer an assessment, then data item CR7900 ‘Assessment Offered’ should be coded 'Not Offered'

This date should correspond to the Assessment/Care plan Point of Pathway and Staff role data items.

Rationale:

• having a single, easily recorded, and consistent date allows for more accurate recording of the data and allows for the identification and removal of duplicate records
• it can be as important to record that a decision has been taken not to offer an assessment as it can be to record that the offer has been made

Assessment/Care Plan Point of Pathway

This is a new data item for v10. Record the point of the pathway where:

• a Holistic Needs Assessment or Personalised Care and Support Planning is offered or
• at which the decision it taken to not offer these

This point of the pathway should correspond to the CR7930 Assessment/Care Plan Date.

Additional notes to help with data recording of CR7940 ‘Assessment/Care Plan Point of Pathway’:

• the HNA pathway time points are not defined in terms of a number of days or weeks from diagnosis or from start/end of treatment that the HNA happens within
• at the time of writing there is no national target timescales for HNA and PCSP to happen after diagnosis or after end of treatment
• however, local standards or protocols may be agreed as to where in each cancer type pathway the HNAs and PCSPs should be carried out as a minimum
  • for example, a local protocol may include the offer of HNA and PCSP prior to treatment, after the end of treatment and (if required) on transition to further treatment or to palliative care
• the focus of HNA and PCSP activity as part of NHS England commitments on the personalisation of cancer care is on these happening at least at diagnosis/start of treatment and again around/after the end of treatment, although for some cancers, diagnosis and completion of treatment may happen on the same day
  • for example, early skin cancer
• HNAs and PCSPs may be requested at any time by the patient
  • please use the nearest appropriate point in pathway code
• if a patient is undergoing further treatments following primary treatment, then the timepoint of pathway should be Start of/During/End of Treatment, as appropriate
  • for example, treatment for recurrence or metastatic disease

Staff Role Offering the Assessment (Choice 1)

This is a new data item for v10, and forms part of a choice. Record the role of the staff member offering the Holistic Needs Assessment. The staff member offering the care planning is recorded in CR7960 ‘Staff Role Offering the Planning’ as this may be a different person.

Additional notes to help with data recording of CR7950 ‘Staff Role Offering the Assessment’:

• HNAs are carried out by any health or social care professional and by support workers/care navigators, volunteers or by the person themselves from home
  • hence, this data item is capturing the staff member offering the HNA rather than how the assessment is carried out
• a staff role is needed to support workforce planning of who and how HNAs are being offered

Staff Role Offering the Planning (Choice 2)

This is a new data item for v10, and forms part of a choice. Record the role of the staff member offering the Personalised Care and Support Planning after completion of the assessment.

Additional notes to help with data recording of CR7960 Staff Role Offering the Planning:

• personalised care and support planning is usually offered by a health or social care professional
• a staff role is needed to support workforce planning of and the workforce offering PCSP activities

Information to support implementation of Holistic Needs Assessment or Personalised Care and Support Planning:

• Macmillan Cancer Support provide comprehensive resources including:
  • Personalised Care guide for professionals
  • educational resources via their learning and development platform including the ‘What Matters to Me?’ short module, and a Personalised Care Community of Practice (requires login)
  • a wide range of resources for people affected by cancer including a booklet on holistic needs assessment
• Guy’s Cancer Academy’s online:
  • learning package on Personalised Care and Support Planning
• E-Learning for Health’s:
  • PRosPer module on supporting people with cancer in personalised care and support planning, prehabilitation and rehabilitation
• NHS England:
  • webpage on Personalised Care and Support Planning (not cancer specific), including guidance and resources
• Personalised Care Institute (not cancer specific):
  • provides a range of resources to equip health and care professionals with the knowledge, skills, and confidence to help patients get more involved in decisions about their care

Note:

• NHS England is not responsible for the content of external websites. All weblinks are current as of 25th April 2023.

This section has been retired in v10; this includes the following data items:

• CR8000 - Care Planning Offered
• CR8010 - Care Planning Completed Date
• CR8020 - Point of Pathway

These have been replaced by the version 10 schema described above, which consists of:

• CR7900 - Assessment Offered
• CR7920 - Assessment/Care Plan Status
• CR7930 - Assessment/Care Plan Date
• CR7940 - Assessment/Care Plan Point of Pathway
• CR7950 - Staff Role Offering the Assessment
• CR7960 - Staff Role Offering the Planning