Chronic paediatric conditions: Cystic Fibrosis

Swann OV, Williams TC, Fraser LK, Farrell J, Parker M, Kennedy J, Seabourne M, Brophy S, Harrison EM, Docherty AB, Pollock L

PH1691 / 3622 Clinical-Coded Phenotype

  1. Overview

    Phenotype Type
    Disease or syndrome
    Sex
    Both
    Valid Event Date Range
    2021/01/01 - 2021/01/01
    Coding System
    SNOMED CT codesICD10 codesRead codes v2
    Collections
    Phenotype Library
    Tags
    No data
  2. Definition

    This code list is part of a set of harmonised code lists to identify chronic paediatric conditions across primary and secondary care datasets across the UK.

    Published ICD-10 and Read v2 code lists were combined with SNOMED codes derived using CALIBERas below:

    Methods

    Chronic paediatric conditions were defined as health problems requiring medical follow-up for more than 12 months in 50% or more of cases. Code lists were produced by mapping existing ICD-10 codes for chronic paediatric conditions to SNOMED and Read v2 codes using the CALIBER R package, with review by paediatric sub-specialists.

    An established ICD-10 code list of chronic paediatric conditions (Hardelid 2014) was used as the basis for the new lists.1 Chronic paediatric conditions were defined as any health problem requiring medical follow-up (hospital admission, outpatient follow up or use of support services such as physiotherapy) for more than 12 months in 50% or more of cases.[1] A Chronic Paediatric Conditions Committee of paediatric sub-specialists was established. The original ICD-10 list was screened by two paediatricians and acute conditions removed, with disagreements resolved by a third paediatrician. Conditions which were likely acute and would not fulfil our chronic disease definition were excluded, including skeletal injuries and self-harm. Drug-induced conditions were excluded as chronicity was not known. Infections other than human immunodeficiency virus (HIV), hepatitis B or C, or congenital infections (syphilis / toxoplasmosis / rubella / herpes simplex virus / cytomegalovirus) were excluded. Chronic sequelae of infections were retained.

    Published code lists were then identified for Read v2 and SNOMED codes for well-characterised conditions including asthma, diabetes, cystic fibrosis and cancer. The remaining ICD-10 codes were mapped to SNOMED and Read v2 codes using the CALIBER R package and Technology Reference Update Distribution NHS Data Migration tables [2] to produce new code lists suitable for primary care data. These resulting code lists were screened by two sub-specialists to ensure conditions were chronic and in the correct subgroup with disagreements resolved by a third clinician.

    References:

    1. Hardelid P, Dattani N, Gilbert R. Estimating the prevalence of chronic conditions in children who die in England, Scotland and Wales: a data linkage cohort study. BMJ Open 2014; 4: e005331.
    2. CALIBER codelists-package: Generate ICD, Read and OPCS codelists in CALIBER codelists: Generate ICD10, Read and OPCS codelists, https://rdrr.io/rforge/CALIBERcodelists/man/CALIBERcodelists-package.html (accessed 19 October 2022).
  3. Implementation

    Implementation

    We have considered conditions to be active if they had been coded for in the preceding five years. In addition, conditions from the following subgroups were considered to be permanent, therefore active if coded for at any time: metabolic, diabetes, cystic fibrosis, transplant, receiving palliative care, other congenital multisystem syndromes and chromosomal abnormalities, immunological and cerebral palsy / paralysis (a subgroup of "Other neurology" code list).

  4. Clinical Code List

  5. Publication

    Related publications

    No known publications

    Citation Requirements

    To our knowledge, these are the first set of harmonised code lists for chronic paediatric conditions that span commonly used primary and secondary care coding systems in the UK. We hope they will prove a valuable resource for the paediatric research community and welcome suggestions for further development (Olivia.Swann@ed.ac.uk).

  6. API

    To Export Phenotype Details:

    FormatAPI
    JSON site_root/api/v1/phenotypes/PH1691/version/3622/detail/?format=json
    R Package

    # Download here

    library(ConceptLibraryClient)


    # Connect to API

    client = ConceptLibraryClient::Connection$new(public=TRUE)


    # Get details of phenotype

    phenotype_details = client$phenotypes$get_detail(
     'PH1691',
     version_id=3622
    )

    Py Package

    # Download here

    from pyconceptlibraryclient import Client


    # Connect to API

    client = Client(public=True)


    # Get codelist of phenotype

    phenotype_codelist = client.phenotypes.get_detail(
     'PH1691',
     version_id=3622
    )

    To Export Phenotype Code List:

    FormatAPI
    JSON site_root/api/v1/phenotypes/PH1691/version/3622/export/codes/?format=json
    R Package

    # Download here

    library(ConceptLibraryClient)


    # Connect to API

    client = ConceptLibraryClient::Connection$new(public=TRUE)


    # Get codelist of phenotype

    phenotype_codelist = client$phenotypes$get_codelist(
     'PH1691',
     version_id=3622
    )

    Py Package

    # Download here

    from pyconceptlibraryclient import Client


    # Connect to API

    client = Client(public=True)


    # Get codelist of phenotype

    phenotype_codelist = client.phenotypes.get_codelist(
     'PH1691',
     version_id=3622
    )

  7. Version History

    Version IDNameOwnerPublish date
    Chronic paediatric conditions: Cystic Fibrosis farrellj2025-01-19 15:49
    3621 Chronic paediatric conditions: Cystic Fibrosis farrellj2025-01-19 15:47
    3598 Cystic Fibrosis farrellj2025-01-18 15:08