Life-limiting conditions - Fraser

Repository details

Name Life-limiting conditions - Fraser
Version 1
id llc_fraser_v1
Previous version NA
Number of files 1
Code list file (right-click to download) llc_fraser_v1.csv
Restrictions file NA
Truncations file NA
Removals file NA
R script (right-click to download) llc_fraser_v1.r
Stata do file Not yet available
Prepared for repo by Matthew Jay
First check Matthew Jay - 2024-06-18
Second check Difei Shi - 2024-10-17
Date added 2024-06-18

Background information

Authors Fraser et al
Year 2012
Reference Fraser et al, Pediatr, 2012. 129(4):e923-e929.
Target phenotype Life-limiting and life-threatening conditions
Dataset HES APC
Datafields diag
Summary Conditions for which there is no reasonable hope of cure and from which children will die. Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer. Includes life-threatening conditions.
Validation Candidate list of codes based on the Hain dictionary and digansoses for children admitted to a hospice. The list was refined by asking whether most children with each diagnosis are life-limited/life-threatened and whether most subdiangoses are life-limiting/life-threatening.
Original purpose To estimate the prevalence of life-limiting and life-threatening conditions in children.
Groups None
Flags None
Other details NA
Changes from original None
Changes since first version in repo NA
Number of codes 277
Codes removed 0
Codes truncated 0

Preview

code dataset field code_type description
A17 hes_apc diag icd10 tuberculosis of nervous system
A81.0 hes_apc diag icd10 creutzfeldt-jakob disease
A81.1 hes_apc diag icd10 subacute sclerosing panencephalitis
B20 hes_apc diag icd10 human immunodeficiency virus [hiv] disease resulting in infectious and parasitic diseases
B21 hes_apc diag icd10 human immunodeficiency virus [hiv] disease resulting in malignant neoplasms
B22 hes_apc diag icd10 human immunodeficiency virus [hiv] disease resulting in other specified diseases
B23 hes_apc diag icd10 human immunodeficiency virus [hiv] disease resulting in other conditions
B24 hes_apc diag icd10 unspecified human immunodeficiency virus [hiv] disease
C00 hes_apc diag icd10 malignant neoplasm of lip
C01 hes_apc diag icd10 malignant neoplasm of base of tongue
C02 hes_apc diag icd10 malignant neoplasm of other and unspecified parts of tongue
C03 hes_apc diag icd10 malignant neoplasm of gum
C04 hes_apc diag icd10 malignant neoplasm of floor of mouth
C05 hes_apc diag icd10 malignant neoplasm of palate
C06 hes_apc diag icd10 malignant neoplasm of other and unspecified parts of mouth
C07 hes_apc diag icd10 malignant neoplasm of parotid gland
C08 hes_apc diag icd10 malignant neoplasm of other and unspecified major salivary glands
C09 hes_apc diag icd10 malignant neoplasm of tonsil
C10 hes_apc diag icd10 malignant neoplasm of oropharynx
C11 hes_apc diag icd10 malignant neoplasm of nasopharynx
C12 hes_apc diag icd10 malignant neoplasm of piriform sinus
C13 hes_apc diag icd10 malignant neoplasm of hypopharynx
C14 hes_apc diag icd10 malignant neoplasm of other and ill-defined sites in the lip oral cavity and pharynx
C15 hes_apc diag icd10 malignant neoplasm of oesophagus
C16 hes_apc diag icd10 malignant neoplasm of stomach
C17 hes_apc diag icd10 malignant neoplasm of small intestine
C18 hes_apc diag icd10 malignant neoplasm of colon
C19 hes_apc diag icd10 malignant neoplasm of rectosigmoid junction
C20 hes_apc diag icd10 malignant neoplasm of rectum
C21 hes_apc diag icd10 malignant neoplasm of anus and anal canal
C22 hes_apc diag icd10 malignant neoplasm of liver and intrahepatic bile ducts
C23 hes_apc diag icd10 malignant neoplasm of gallbladder
C24 hes_apc diag icd10 malignant neoplasm of other and unspecified parts of biliary tract
C25 hes_apc diag icd10 malignant neoplasm of pancreas
C26 hes_apc diag icd10 malignant neoplasm of other and ill-defined digestive organs
C30 hes_apc diag icd10 malignant neoplasm of nasal cavity and middle ear
C31 hes_apc diag icd10 malignant neoplasm of accessory sinuses
C32 hes_apc diag icd10 malignant neoplasm of larynx
C33 hes_apc diag icd10 malignant neoplasm of trachea
C34 hes_apc diag icd10 malignant neoplasm of bronchus and lung
C37 hes_apc diag icd10 malignant neoplasm of thymus
C38 hes_apc diag icd10 malignant neoplasm of heart mediastinum and pleura
C39 hes_apc diag icd10 malignant neoplasm of other and ill-defined sites in the respiratory system and intrathoracic organs
C40 hes_apc diag icd10 malignant neoplasm of bone and articular cartilage of limbs
C41 hes_apc diag icd10 malignant neoplasm of bone and articular cartilage of other and unspecified sites
C43 hes_apc diag icd10 malignant melanoma of skin
C44 hes_apc diag icd10 other malignant neoplasms of skin
C45 hes_apc diag icd10 mesothelioma
C46 hes_apc diag icd10 kaposi sarcoma
C47 hes_apc diag icd10 malignant neoplasm of peripheral nerves and autonomic nervous system
C48 hes_apc diag icd10 malignant neoplasm of retroperitoneum and peritoneum
C49 hes_apc diag icd10 malignant neoplasm of other connective and soft tissue
C50 hes_apc diag icd10 malignant neoplasm of breast
C51 hes_apc diag icd10 malignant neoplasm of vulva
C52 hes_apc diag icd10 malignant neoplasm of vagina
C53 hes_apc diag icd10 malignant neoplasm of cervix uteri
C54 hes_apc diag icd10 malignant neoplasm of corpus uteri
C55 hes_apc diag icd10 malignant neoplasm of uterus part unspecified
C56 hes_apc diag icd10 malignant neoplasm of ovary
C57 hes_apc diag icd10 malignant neoplasm of other and unspecified female genital organs
C58 hes_apc diag icd10 malignant neoplasm of placenta
C60 hes_apc diag icd10 malignant neoplasm of penis
C61 hes_apc diag icd10 malignant neoplasm of prostate
C62 hes_apc diag icd10 malignant neoplasm of testis
C63 hes_apc diag icd10 malignant neoplasm of other and unspecified male genital organs
C64 hes_apc diag icd10 malignant neoplasm of kidney except renal pelvis
C65 hes_apc diag icd10 malignant neoplasm of renal pelvis
C66 hes_apc diag icd10 malignant neoplasm of ureter
C67 hes_apc diag icd10 malignant neoplasm of bladder
C68 hes_apc diag icd10 malignant neoplasm of other and unspecified urinary organs
C69 hes_apc diag icd10 malignant neoplasm of eye and adnexa
C70 hes_apc diag icd10 malignant neoplasm of meninges
C71 hes_apc diag icd10 malignant neoplasm of brain
C72 hes_apc diag icd10 malignant neoplasm of spinal cord cranial nerves and other parts of central nervous system
C73 hes_apc diag icd10 malignant neoplasm of thyroid gland
C74 hes_apc diag icd10 malignant neoplasm of adrenal gland
C75 hes_apc diag icd10 malignant neoplasm of other endocrine glands and related structures
C76 hes_apc diag icd10 malignant neoplasm of other and ill-defined sites
C77 hes_apc diag icd10 secondary and unspecified malignant neoplasm of lymph nodes
C78 hes_apc diag icd10 secondary malignant neoplasm of respiratory and digestive organs
C79 hes_apc diag icd10 secondary malignant neoplasm of other and unspecified sites
C80 hes_apc diag icd10 malignant neoplasm without specification of site
C81 hes_apc diag icd10 hodgkin lymphoma
C82 hes_apc diag icd10 follicular lymphoma
C83 hes_apc diag icd10 non-follicular lymphoma
C84 hes_apc diag icd10 mature t/nk-cell lymphomas
C85 hes_apc diag icd10 other and unspecified types of non-hodgkin lymphoma
C86 hes_apc diag icd10 other specified types of t/nk-cell lymphoma
C88 hes_apc diag icd10 malignant immunoproliferative diseases
C90 hes_apc diag icd10 multiple myeloma and malignant plasma cell neoplasms
C91 hes_apc diag icd10 lymphoid leukaemia
C92 hes_apc diag icd10 myeloid leukaemia
C93 hes_apc diag icd10 monocytic leukaemia
C94 hes_apc diag icd10 other leukaemias of specified cell type
C95 hes_apc diag icd10 leukaemia of unspecified cell type
C96 hes_apc diag icd10 other and unspecified malignant neoplasms of lymphoid haematopoietic and related tissue
C97 hes_apc diag icd10 malignant neoplasms of independent (primary) multiple sites
D33 hes_apc diag icd10 benign neoplasm of brain and other parts of central nervous system
D43 hes_apc diag icd10 neoplasm of uncertain or unknown behaviour of brain and central nervous system
D44.4 hes_apc diag icd10 neoplasm of uncertain or unknown behaviour: craniopharyngeal duct
D48 hes_apc diag icd10 neoplasm of uncertain or unknown behaviour of other and unspecified sites
D56.1 hes_apc diag icd10 beta thalassaemia
D61.0 hes_apc diag icd10 constitutional aplastic anaemia
D61.9 hes_apc diag icd10 aplastic anaemia unspecified
D70 hes_apc diag icd10 agranulocytosis
D76.1 hes_apc diag icd10 haemophagocytic lymphohistiocytosis
D81 hes_apc diag icd10 combined immunodeficiencies
D82.1 hes_apc diag icd10 di george syndrome
D83 hes_apc diag icd10 common variable immunodeficiency
D89.1 hes_apc diag icd10 cryoglobulinaemia
E31.0 hes_apc diag icd10 autoimmune polyglandular failure
E34.8 hes_apc diag icd10 other specified endocrine disorders
E70.2 hes_apc diag icd10 disorders of tyrosine metabolism
E71 hes_apc diag icd10 disorders of branched-chain amino-acid metabolism and fatty-acid metabolism
E72 hes_apc diag icd10 other disorders of amino-acid metabolism
E74 hes_apc diag icd10 other disorders of carbohydrate metabolism
E75 hes_apc diag icd10 disorders of sphingolipid metabolism and other lipid storage disorders
E76 hes_apc diag icd10 disorders of glycosaminoglycan metabolism
E77 hes_apc diag icd10 disorders of glycoprotein metabolism
E79.1 hes_apc diag icd10 lesch-nyhan syndrome
E83.0 hes_apc diag icd10 disorders of copper metabolism
E84 hes_apc diag icd10 cystic fibrosis
E88.0 hes_apc diag icd10 disorders of plasma-protein metabolism not elsewhere classified
E88.1 hes_apc diag icd10 lipodystrophy not elsewhere classified
F80.3 hes_apc diag icd10 acquired aphasia with epilepsy [landau-kleffner]
F84.2 hes_apc diag icd10 rett syndrome
G10 hes_apc diag icd10 huntington disease
G11.1 hes_apc diag icd10 early-onset cerebellar ataxia
G11.3 hes_apc diag icd10 cerebellar ataxia with defective dna repair
G12 hes_apc diag icd10 spinal muscular atrophy and related syndromes
G20 hes_apc diag icd10 parkinson disease
G23.0 hes_apc diag icd10 hallervorden-spatz disease
G23.8 hes_apc diag icd10 other specified degenerative diseases of basal ganglia
G31.8 hes_apc diag icd10 other specified degenerative diseases of nervous system
G31.9 hes_apc diag icd10 degenerative disease of nervous system unspecified
G35 hes_apc diag icd10 multiple sclerosis
G40.4 hes_apc diag icd10 other generalized epilepsy and epileptic syndromes
G40.5 hes_apc diag icd10 special epileptic syndromes
G60.0 hes_apc diag icd10 hereditary motor and sensory neuropathy
G60.1 hes_apc diag icd10 refsum disease
G70.2 hes_apc diag icd10 congenital and developmental myasthenia
G70.9 hes_apc diag icd10 myoneural disorder unspecified
G71.0 hes_apc diag icd10 muscular dystrophy
G71.1 hes_apc diag icd10 myotonic disorders
G71.2 hes_apc diag icd10 congenital myopathies
G71.3 hes_apc diag icd10 mitochondrial myopathy not elsewhere classified
G80.0 hes_apc diag icd10 spastic quadriplegic cerebral palsy
G80.8 hes_apc diag icd10 other cerebral palsy
G82.3 hes_apc diag icd10 flaccid tetraplegia
G82.4 hes_apc diag icd10 spastic tetraplegia
G82.5 hes_apc diag icd10 tetraplegia unspecified
G93.4 hes_apc diag icd10 encephalopathy unspecified
G93.6 hes_apc diag icd10 cerebral oedema
G93.7 hes_apc diag icd10 reye syndrome
H11.1 hes_apc diag icd10 conjunctival degenerations and deposits
H49.8 hes_apc diag icd10 other paralytic strabismus
H35.5 hes_apc diag icd10 hereditary retinal dystrophy
I21 hes_apc diag icd10 acute myocardial infarction
I27.0 hes_apc diag icd10 primary pulmonary hypertension
I42 hes_apc diag icd10 cardiomyopathy
I61.3 hes_apc diag icd10 intracerebral haemorrhage in brain stem
I81 hes_apc diag icd10 portal vein thrombosis
J84.1 hes_apc diag icd10 other interstitial pulmonary diseases with fibrosis
J96 hes_apc diag icd10 respiratory failure not elsewhere classified
J98.4 hes_apc diag icd10 other disorders of lung
K55.0 hes_apc diag icd10 acute vascular disorders of intestine
K55.9 hes_apc diag icd10 vascular disorder of intestine unspecified
K72 hes_apc diag icd10 hepatic failure not elsewhere classified
K74 hes_apc diag icd10 fibrosis and cirrhosis of liver
K76.5 hes_apc diag icd10 hepatic veno-occlusive disease
K86.8 hes_apc diag icd10 other specified diseases of pancreas
M31.3 hes_apc diag icd10 wegener granulomatosis
M32.1 hes_apc diag icd10 systemic lupus erythematosus with organ or system involvement
M89.5 hes_apc diag icd10 osteolysis
N17 hes_apc diag icd10 acute renal failure
N18 hes_apc diag icd10 chronic kidney disease
N19 hes_apc diag icd10 unspecified kidney failure
N25.8 hes_apc diag icd10 other disorders resulting from impaired renal tubular function
P10.1 hes_apc diag icd10 cerebral haemorrhage due to birth injury
P11.2 hes_apc diag icd10 unspecified brain damage due to birth injury
P21.0 hes_apc diag icd10 severe birth asphyxia
P28.5 hes_apc diag icd10 respiratory failure of newborn
P29.0 hes_apc diag icd10 neonatal cardiac failure
P29.3 hes_apc diag icd10 persistent fetal circulation
P35.0 hes_apc diag icd10 congenital rubella syndrome
P35.1 hes_apc diag icd10 congenital cytomegalovirus infection
P35.8 hes_apc diag icd10 other congenital viral diseases
P37.1 hes_apc diag icd10 congenital toxoplasmosis
P52.4 hes_apc diag icd10 intracerebral (nontraumatic) haemorrhage of fetus and newborn
P52.5 hes_apc diag icd10 subarachnoid (nontraumatic) haemorrhage of fetus and newborn
P52.9 hes_apc diag icd10 intracranial (nontraumatic) haemorrhage of fetus and newborn unspecified
P83.2 hes_apc diag icd10 hydrops fetalis not due to haemolytic disease
P91.2 hes_apc diag icd10 neonatal cerebral leukomalacia
P91.6 hes_apc diag icd10 hypoxic ischaemic encephalopathy of newborn
P96.0 hes_apc diag icd10 congenital renal failure
Q00.0 hes_apc diag icd10 anencephaly
Q01 hes_apc diag icd10 encephalocele
Q03.1 hes_apc diag icd10 atresia of foramina of magendie and luschka
Q03.9 hes_apc diag icd10 congenital hydrocephalus unspecified
Q04.0 hes_apc diag icd10 congenital malformations of corpus callosum
Q04.2 hes_apc diag icd10 holoprosencephaly
Q04.3 hes_apc diag icd10 other reduction deformities of brain
Q04.4 hes_apc diag icd10 septo-optic dysplasia
Q04.6 hes_apc diag icd10 congenital cerebral cysts
Q04.9 hes_apc diag icd10 congenital malformation of brain unspecified
Q07.0 hes_apc diag icd10 arnold-chiari syndrome
Q20.0 hes_apc diag icd10 common arterial trunk
Q20.3 hes_apc diag icd10 discordant ventriculoarterial connection
Q20.4 hes_apc diag icd10 double inlet ventricle
Q20.6 hes_apc diag icd10 isomerism of atrial appendages
Q20.8 hes_apc diag icd10 other congenital malformations of cardiac chambers and connections
Q21.3 hes_apc diag icd10 tetralogy of fallot
Q23.2 hes_apc diag icd10 congenital mitral stenosis
Q21.8 hes_apc diag icd10 other congenital malformations of cardiac septa
Q22.0 hes_apc diag icd10 pulmonary valve atresia
Q22.1 hes_apc diag icd10 congenital pulmonary valve stenosis
Q22.4 hes_apc diag icd10 congenital tricuspid stenosis
Q22.5 hes_apc diag icd10 ebstein anomaly
Q22.6 hes_apc diag icd10 hypoplastic right heart syndrome
Q23.0 hes_apc diag icd10 congenital stenosis of aortic valve
Q23.4 hes_apc diag icd10 hypoplastic left heart syndrome
Q23.9 hes_apc diag icd10 congenital malformation of aortic and mitral valves unspecified
Q25.4 hes_apc diag icd10 other congenital malformations of aorta
Q25.6 hes_apc diag icd10 stenosis of pulmonary artery
Q26.2 hes_apc diag icd10 total anomalous pulmonary venous connection
Q26.4 hes_apc diag icd10 anomalous pulmonary venous connection unspecified
Q26.8 hes_apc diag icd10 other congenital malformations of great veins
Q28.2 hes_apc diag icd10 arteriovenous malformation of cerebral vessels
Q32.1 hes_apc diag icd10 other congenital malformations of trachea
Q33.6 hes_apc diag icd10 hypoplasia and dysplasia of lung
Q39.6 hes_apc diag icd10 diverticulum of oesophagus
Q41.0 hes_apc diag icd10 congenital absence atresia and stenosis of duodenum
Q41.9 hes_apc diag icd10 congenital absence atresia and stenosis of small intestine part unspecified
Q43.7 hes_apc diag icd10 persistent cloaca
Q44.2 hes_apc diag icd10 atresia of bile ducts
Q74.8 hes_apc diag icd10 other specified congenital malformations of limb(s)
Q44.5 hes_apc diag icd10 other congenital malformations of bile ducts
Q44.7 hes_apc diag icd10 other congenital malformations of liver
Q60.1 hes_apc diag icd10 renal agenesis bilateral
Q60.6 hes_apc diag icd10 potter syndrome
Q61.4 hes_apc diag icd10 renal dysplasia
Q61.9 hes_apc diag icd10 cystic kidney disease unspecified
Q64.2 hes_apc diag icd10 congenital posterior urethral valves
Q74.3 hes_apc diag icd10 arthrogryposis multiplex congenita
Q75.0 hes_apc diag icd10 craniosynostosis
Q77.2 hes_apc diag icd10 short rib syndrome
Q77.3 hes_apc diag icd10 chondrodysplasia punctata
Q77.4 hes_apc diag icd10 achondroplasia
Q78.0 hes_apc diag icd10 osteogenesis imperfecta
Q78.5 hes_apc diag icd10 metaphyseal dysplasia
Q79.2 hes_apc diag icd10 exomphalos
Q79.3 hes_apc diag icd10 gastroschisis
Q80.4 hes_apc diag icd10 harlequin fetus
Q81 hes_apc diag icd10 epidermolysis bullosa
Q82.1 hes_apc diag icd10 xeroderma pigmentosum
Q82.4 hes_apc diag icd10 ectodermal dysplasia (anhidrotic)
Q85.8 hes_apc diag icd10 other phakomatoses not elsewhere classified
Q86.0 hes_apc diag icd10 fetal alcohol syndrome (dysmorphic)
Q87.0 hes_apc diag icd10 congenital malformation syndromes predominantly affecting facial appearance
Q87.1 hes_apc diag icd10 congenital malformation syndromes predominantly associated with short stature
Q87.2 hes_apc diag icd10 congenital malformation syndromes predominantly involving limbs
Q87.8 hes_apc diag icd10 other specified congenital malformation syndromes not elsewhere classified
Q91 hes_apc diag icd10 edwards’ syndrome and patau syndrome
Q92.0 hes_apc diag icd10 whole chromosome trisomy meiotic nondisjunction
Q92.1 hes_apc diag icd10 whole chromosome trisomy mosaicism (mitotic nondisjunction)
Q92.4 hes_apc diag icd10 duplications seen only at prometaphase
Q92.7 hes_apc diag icd10 triploidy and polyploidy
Q92.8 hes_apc diag icd10 other specified trisomies and partial trisomies of autosomes
Q93.2 hes_apc diag icd10 chromosome replaced with ring or dicentric
Q93.3 hes_apc diag icd10 deletion of short arm of chromosome 4
Q93.4 hes_apc diag icd10 deletion of short arm of chromosome 5
Q93.5 hes_apc diag icd10 other deletions of part of a chromosome
Q93.8 hes_apc diag icd10 other deletions from the autosomes
Q95.2 hes_apc diag icd10 balanced autosomal rearrangement in abnormal individual
T86.0 hes_apc diag icd10 bone-marrow transplant rejection
T86.2 hes_apc diag icd10 heart transplant failure and rejection
Z51.5 hes_apc diag icd10 palliative care