Learning Disability QOF codes

[ralmond-nhs-e-i]

The health inequalities analyst team in NHS E&I are hoping to do some analysis of how people with learning disabilities have been impacted by the pandemic. To do so we need to ensure appropriate codes are available in the code lists.

There are currently 3 code lists which reference disabilities: https://codelists.opensafely.org/?q=disab

However they do not reference the Quality and Outcome Framework (QOF) which incentivises GPs to keep a register of individuals with learning disabilities. Therefore it would be ideal if we could add a more suitable list.

There are currently two lists that seem to be up to date and reference SNOMED codes, they are QOF v45.0 Business rules (referencing the 2020-21 base codes, see Download of the expanded cluster list) and Learning Disabilities Data (LDD) (see Version 3.0 referencing 2019-20).

These two data sets are almost identical with the QOF v45.0 Business rules including 252 LD_COD codes and Learning Disabilities Data (LDD) including 253 LC_COD codes. After comparing both lists the only difference is the inclusion/exclusion of the SNOMED code 205824006 which refers to "Noonan's syndrome (disorder)". It's unclear in the business rules why this code has been removed in the more recent QOF v45.0 Business rules as it isn't referenced in the baseline release documents.

Searching for the syndrome within NHS pages finds: https://www.nhs.uk/conditions/noonan-syndrome/ , the characteristics seem to be physical rather than specific to having a learning disability. With the other characteristics section specifically referencing learning disabilities stating "children with Noonan syndrome tend to have a slightly lower-than-average IQ and a small number have learning disabilities, although these are often mild". Without any medical expertise I would the assume that having Noonan syndrome doesn't have a 1-1 relationship with learning disabilities. It would be really helpful to get some clinical understanding of these code to ensure the new code list is appropriate for determining an accurate register for analysis of individuals with learning disabilities.

[ralmond-nhs-e-i]

I've added a draft here: https://codelists.opensafely.org/codelist/user/rosealmond/learning-disabilities-qof-v45-business-rules/770e3a94/

[helenmcd]

Hi,

I think @brianmckenna might be a good person to ask about this.

As I understand it, the list here https://codelists.opensafely.org/codelist/opensafely/learning-disabilities/2020-07-06/ is one which he derived in CTV3 by mapping the QOF codes (we couldn't use SNOMED codes directly at the time).

We've also got two new codelists specifically for cerebral palsy and Down syndrome which may be of interest for expanding the definition too. https://codelists.opensafely.org/codelist/opensafely/cerebral-palsy/1835edac/ https://codelists.opensafely.org/codelist/opensafely/down-syndrome/15832db6/

There've been a few issues spotted with the intellectual disability list (includes some codes which don't indicate a diagnosis, such as "Down's child in family") so it's not recommended for use without an update (we need to find a way to retire codelists that should be archived but not used for fresh studies) https://codelists.opensafely.org/codelist/opensafely/intellectual-disability-including-downs-syndrome/2020-08-27/

You might also consider looking at the PRIMIS specification for indications for vaccination, depending on your study question?

I'm afraid Noonan syndrome is beyond my expertise!

[inglesp]

It's @brianmackenna you're after!

[helenmcd]

Thanks!!