Information Specification

The data items required for National Cancer Data Standards for Wales – Patient Group Specific – Teenage Young Adult (TYA) and their equivalent labels in COSD V9.0, where there is an equivalent, are listed below.

Where the specification cites NHS Wales Data Dictionary, please refer to the Dictionary for the relevant guidance i.e. definition, format, or code list.

For consistency, all dates listed in the Specification are standardised as ccyymmdd.

Where D is denoted in Status, this indicates that the information should be derived from another data item. This typically occurs with data items that are simply text representations of their code counterparts. Other Status codes are M (Mandatory), R (Required) – the data item should be recorded where applicable and O (Optional).

Core data items should be collected for all cancers. To reduce replication of information, Core data items have not been listed in this patient group specific Standard and users should refer to National Cancer Data Standards for Wales – 1. National Cancer Data Set - Full list DSCNs.xlsx (live.com) for a list of Core requirements. However, in some cases, the site/patient group specific application of Core data items may differ e.g. a particular site/patient group may require additional or fewer codes to those already published in Core, or perhaps have additional business rules as to how the Core data item should be coded. Where this occurs, the Core data item will be replicated in the site/patient group specific Standard with the respective additional site/patient group specific detail. These are flagged in the following table with an * next to the data item name.

For data items used in the National Cancer Data Standards for Wales that already exist within the NHS Wales Data Dictionary. These data items have been flagged with an † next to the data item name, as whilst this introduces a change to an existing information standard, the immediate use of this mandate will be used as a framework for the development of the CIS, therefore service/data providers should continue with ‘business as usual’ in terms of the data being collected and reported.

Reporting Data Item	Definition	Format	Code List (Code)	Code List (Text)	Status	COSD
MDT Details
MDT Referral from Local MDT Team to TYA MDT	Record if a MDT referral from the Health Board MDT team to the TYA MDT was made	Code List	01	Yes	R	N/A
			02	No
MDT Specialty Referring to the TYA MDT*	Record the MDT site specialty referring the patient for discussion at the TYA MDT This could be determined by the MDT meeting type	Code List		Any code from the Core list of codes for Multidisciplinary Team Meeting Type (CR3190), excluding 0407 - Teenage and Young Adult MDT	R	Multidisciplinary Team Meeting Type (CR3190)
Discussed at TYA MDT where treatment plan confirmed	Record if the patient was discussed at the TYA MDT Meeting where the Treatment Plan was Confirmed Note: This data item is only required where MDT Meeting Identifier (MDT Meeting Type) (in Core) is recorded as Teenage and Young Adult MDT	Code List	01	Yes	R	N/A
			02	No
TYA Clinical Trial Availability Assessment Undertaken	Record if a TYA clinical trial assessment has been undertaken for the patient To ensure that specific TYA/Paediatric/Adult clinical trials are considered if available	Code List	01	Yes	R	N/A
			02	No
TYA/Paediatric/Adult Trial Available	Following the clinical trial assessment, was a TYA/Paediatric/Adult trial available for the patient	Code List	01	Yes	R	N/A
			02	No
Treatment (One occurrence per treatment submission/multiple treatments through pathway)
TYA Principal Treatment Centre Status	An indication of the status of whether a patient has been offered treatment (SACT/Supportive Care) within the TYA Principal Treatment Centre	Code List	01	Offered and Accepted Treatment within the PTC	R	N/A
			02	Offered and Declined Treatment within the PTC
			09	Not Known (Not Recorded)
Place of Care Chosen	Record the patient’s choice of where to receive care and treatment	Code List	7A4	PTC - Cardiff & Vale UHB	R	N/A
			317	Treatment locally in TYA designated hospital and not at a PTC
			318	Treatment locally but NOT in a TYA designated hospital and not at a PTC
			RRK02	University Hospitals Birmingham NHS Foundation Trust
			RBV01	The Christie NHS Foundation Trust
			REN20	The Clatterbridge Cancer Centre NHS Foundation Trust
			09	Not Known
Organisation Site Identifier	Record the organisation where SACT and/or Supportive Care treatment was provided by a local organisation Note: This data item is only required where Place of Care Chosen is recorded as Treatment locally in TYA designated hospital and not at a PTC or Treatment locally but NOT in a TYA designated hospital and not at a PTC	See Terms - Organisation Code - LHB/Trust Site Code	N/A	N/A	R	N/A
Teenage Young Adult (TYA) Principal Treatment Centre	Record the patient's nominated TYA principal treatment centre (PTC), whether they have chosen to have treatment at the PTC. If the service is integrated between two PTCs, record both. Multiples can be chosen Note: Only those centres applicable to Wales are listed here	Code List	7A4	Cardiff and Vale University Health Board	R	Teenage Young Adult (TYA) Principal Treatment Centre (CT7610)
			RRK02	University Hospitals Birmingham NHS Foundation Trust
			RBV01	The Christie NHS Foundation Trust
			REN20	The Clatterbridge Cancer Centre NHS Foundation Trust
			REM	Liverpool University Hospitals NHS Foundation Trust
			RBS01	Alder Hey Children's NHS Foundation Trust
Keyworker (Multiples can be added through Pathway)
Staff Role Carrying out the Keyworker Role	Record the role of the individual carrying out the role of Keyworker	Code List	01	Cancer Nurse Specialist	R	N/A
			07	Cancer Nurse Specialist - Tumour Site Specific
			10	Cancer Nurse Specialist - TYA Specific
			02	Other Nurse
			03	Allied Health Professional
			04	Support Worker/Care Navigator/Cancer Information & Support co-ordinator
			05	Psychologist or other mental health professional
			06	Consultant/Medical Team
			11	TYA Social Care Professional
			12	TYA Social Worker
			13	TYA Youth Worker
			08	Other
			09	Not Known
Additional Patient Care Details - Fertility (Multiples can be added through pathway)
Fertility Preservation Assessment Undertaken	Record if the patient underwent a fertility preservation assessment	Code List	01	Yes	R	N/A
			02	No
Reason No Assessment Undertaken	Record the reason why No fertility assessment was undertaken Note: This data item is only required where Fertility Preservation Assessment Undertaken is recorded as No	Code List	01	Not required/not appropriate	R	N/A
			02	Unable to assess due to clinical urgency to commence treatment
			03	Offered but declined - patient preference
			04	Not offered
			09	Not known
Fertility - Point in Pathway	The point in the pathway when fertility services was allocated	Code List	91	Point of Suspicion	R	N/A
			01	Initial cancer diagnosis
			02	Start of treatment
			03	During treatment
			04	End of treatment
			05	Diagnosis of recurrence
			06	Transition to palliative care
			07	Prehabilitation
			08	Late onset - consequence of cancer
			98	Other
Date referred to Wales Fertility Institute	Record the date that the patient was referred to the Wales Fertility Institute	ccyymmdd	N/A	N/A	R	N/A
Type of Fertility Preservation Procedure Performed	Record the type of fertility preservation procedure that was performed	Code List	01	Sperm Collection	R	N/A
			02	Egg Collection
			03	Testicular Biopsy
			04	Ovarian Biopsy
			05	Not Done
			06	GnRH analogue injection
Psychosocial Care Details (Multiples can be added through pathway)
Psychosocial Support Status	An indication of the status of whether a patient has been offered psychosocial support	Code List	01	Offered and Accepted	R	N/A
			02	Offered and Declined
			09	Not Known (Not Recorded)
Psychosocial Support Place	An indication of the place that provided the psychosocial support services, if accepted (multiples responses)	Code List	01	Principal Treatment Centre (PTC)	R	N/A
			02	Local Service provided within Health Board
			03	Third Sector Support Services
			09	Not Known (Not Recorded)
Psychosocial - Point in Pathway	The point in the pathway when psychosocial support was offered	Code List	01	At Diagnosis	R	N/A
			02	During treatment
			03	End of Definitive Treatment
			04	During Long Term Follow Up
			05	Relapse/Recurrence
			06	During Palliative Care
			07	Bereavement
			98	Other
Psychology Services Care Details (Multiples can be added through pathway)
Psychology Services Referral	Record if the patient was referred to Psychology Services	Code List	01	Yes	R	N/A
			02	No
Date of Psychology Services Referral	Record the date a Psychology Services Referral was made	ccyymmdd	N/A	N/A	R	N/A
Psychology Services Referral - Point in Pathway	The point in the pathway when a psychology services referral was made	Code List	01	At Diagnosis	R	N/A
			02	During treatment
			03	End of Definitive Treatment
			04	During Long Term Follow Up
			05	Relapse/Recurrence
			06	During Palliative Care
			07	Bereavement
			98	Other
Allied Health Professional (AHP) Services Care Details (Multiples can be added through pathway) (Repeating data items as could be referred to more than one AHP service)
AHP Services Referral	Record if the patient was referred to an AHP Service	Code List	01	Yes	R	N/A
			02	No
Start of Repeating Data Items
AHP Service Referred To	Record the AHP service the patient was referred to	Code List	01	Physiotherapy	R	N/A
			02	Occupational Therapy
			03	Speech and Language Therapy (SALT)
			04	Dietician
			05	Complementary Therapy
Date of AHP Service Referral	Record the date the AHP Service Referral was made	ccyymmdd	N/A	N/A	R	N/A
AHP Services Referral - Point in Pathway	The point in the pathway when the AHP services referral was made	Code List	01	At Diagnosis	R	N/A
			02	During treatment
			03	End of Definitive Treatment
			04	During Long Term Follow Up
			05	Relapse/Recurrence
			06	During Palliative Care
			07	Bereavement
			98	Other
End of Repeating Data Items
Rehabilitation - Recovery Package (Multiples can be added through pathway)
Recovery Package Offered	An indication of whether a patient has been offered a recovery package post treatment	Code List	01	Offered and Undecided	R	N/A
			02	Offered and Declined
			03	Offered and Accepted
			04	Not Offered
			05	Offered but patient unable to complete
Date Recovery Package Offered	Record the date the Recovery Package is offered	ccyymmdd	N/A	N/A	R	N/A
Recovery Package Completed Date	Record the date Recovery Package is completed	ccyymmdd	N/A	N/A	R	N/A