REVIEW ARTICLE

Supplemental Materials

SUPPLEMENTAL TABLE 4 Search Strategy Developed for Embase and Adapted for Use Across Each Database Search Terms 1. Parent parent*.mp. or parent/ or father/ or father*.mp. or mother*.mp. or mother/ or maternal.mp. or maternal care/ or paternal.mp. or caregiver*.mp. or caregiver*.mp. or carer*.mp. or families.mp. or family.mp. or caregiver/ or care taker*.mp. or caretaker*.mp. or guardian*.mp. 2. Health measurement tools questionnaire/ or health questionnaire*.mp. or health measure*.mp. or interview/ or health interview*.mp. or health survey/ or Health surve*.mp. or interview*.mp. or interview/ or quantitative.mp. or qualitative.mp. or quality of life.mp. or “quality of life”/or Focus Groups.mp. or interview/ or interview.mp. or Health Status.mp. or health status/ or cross- sectional study/ or cross-sectional.mp. 3. (1 AND 2) 4. Child new born*.mp. or pediatric*.mp. or pediatrics/ or baby.mp. or baby/ or babies.mp. or baby/ or toddler*.mp. or toddler/ or girl*.mp. or girl/ or boy*.mp. or boy/ or adolescen*.mp. or juvenile/ or juvenile*.mp. or young people.mp. or child.mp. or child/ or young person.mp. or child*.mp. or newborn*.mp. or adolescen*.mp. or infant*.mp. or neonate*.mp. or pediatric*.mp. 5. LLC or illness 5a. Cancer cancer*.mp. OR neoplasm*.mp. or malignan*.mp. or Leukemia/ or leukemia*.mp. or leukemia*.mp. or Lymphoma/ or lymphoma.mp. or tumor*.mp. or tumor*.mp. 5b. Neuro cerebral palsy/ or cerebral pals*.mp. or / or epileps*.mp. or Epileptic encephalopath*.mp. or muscular dystrophy/ or muscular dystroph*.mp. or Duchenne muscular dystrophy.mp. or Duchenne muscular dystrophy/ or / or Myotonic dystroph*.mp. or glycogen storage disease type 2/ or Pompe*.mp. or anterior horn cell disease/ or anterior horn cell disease*.mp. or Febrile infection-related epilepsy syndrome.mp. or West Syndrome.mp. or infantile spasm/ or Lennox Gastaut syndrome.mp. or Lennox Gastaut syndrome/ or ohtahara syndrome.mp. or ohtahara syndrome/ or “disorders of mitochondrial functions”/ or Mitochondrial disorder*.mp. or spinal muscular atrophy.mp. or spinal muscular atrophy/ or neuronal ceroid lipofuscinosis/ or Infantile neuronal ceroid lipofuscinosis.mp. or Krabbe.mp. or leukodystrophy/ or leukodystroph*.mp. or Pelizaeus Merzbacher disease/ or Pelizaeus Merzbacher.mp. or / or Rett.mp. or Tay Sachs.mp. or Tay Sachs disease/ or Gaucher disease/ or Gaucher*.mp. or Mucopolysaccharidoses.mp. or mucopolysaccharidosis/ or Alpers disease/ or Alpers.mp. or Niemann-Pick Type C.mp. or Friedrich* .mp. or Friedreich ataxia/ or Variant Creutzfeldt Jakob disease.mp. or variant Creutzfeldt Jakob disease/ or Huntington disease.mp. or Subacute sclerosing panencephalitis.mp. or subacute sclerosing panencephalitis/ or multiple sclerosis/ or Pediatric multiple sclerosis.mp. or pediatric Stroke.mp. or meningitis/ or Meningitis.mp. or PEHO syndrome.mp. or CLIPPERS.mp. or Chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids.mp. or acquired brain injury/ or Acquired brain injur*.mp. or Epilepsy syndrom*.mp. or (Neurodegenerative adj disorder*).mp. or 38. (Neurodegenerative adj disease*).mp. or (Neuromuscular adj disorder*).mp. or (Neuromuscular adj disease*).mp. or Metabolic myopath*.mp. or central nervous system infection/ or central nervous system infection*.mp. or Dravet syndrome.mp. or severe in infancy/ or adrenoleukodystrophy/ or Adrenoleukodystrophy*.mp. or Encephalopath*.mp. Metachromatic leukodystrophy.mp. or metachromatic leukodystrophy/ or glycogen storage disease/ or Glycogen storage disorder*.mp. or pediatric stroke.mp. or multiple sclerosis/ or Pediatric multiple sclerosis.mp. or Pediatric multiple sclerosis.mp. 5c.Gastrorenal end stage renal failure.mp. or end stage kidney failure.mp. or end stage kidney disease*.mp. or gastrointestinal disease*.mp. or gastrointestinal malformations*.mp. or enteritis/ or enteritis.mp. or Short gut syndrome.mp. or short bowel syndrome/ or short bowel syndrome.mp. or Short Bowel Syndrome/ or Intestinal atresia*.mp. or intestine atresia/ or Biliary atresia*.mp. or bile duct atresia/ or tracheoesophageal fistula/ or Tracheoesphageal fistula*.mp. or Renal dysplasia*.mp. or kidney dysplasia/ or Renal agenesis.mp. or kidney agenesis/ or Potter syndrome.mp. or Potter syndrome/ or nephrotic syndrome*.mp. or nephrotic syndrome/ Cystic kidney disease.mp. or kidney polycystic disease/ or renal disorder*.mp. or kidney disease/ or end-stage renal disease*.mp. or Kidney Failure, Chronic/ or necrotizing enterocolitis.mp. or necrotizing enterocolitis/ or kidney disease*.mp. or kidney agenesis.mp. or kidney agenesis/ or kidney dysplasia/ or kidney dysplasia*.mp. 5d. Metabolic Metabolic disorder*.mp. or metabolic disorder/ or “inborn error of metabolism”/ or In-born errors of metabolism.mp. or Peroxisomal disorder*.mp. or “disorders of peroxisomal functions”/ or Mitochondrial disorder*.mp. or “disorders of mitochondrial functions”/ Disorders of amino acid metabolism.mp. or Menkes disease.mp. or Menkes syndrome/ or Fanconi syndrome.mp. or Fanconi renotubular syndrome/ or Gaucher disease.mp. or Gaucher disease/ or Mitochondrial disease*.mp. or “disorders of mitochondrial functions”/or glycogen storage disease/ or Glycogen storage disorder*.mp. or metachromatic leukodystrophy.mp. or metachromatic leukodystrophy/ or mucopolysaccharidosis/ or mucopolysaccharidosis.mp. or urea cycle disorder.mp. or urea cycle disorder/ or Glucose transporter deficienc*.mp. Lipid storage disorder*.mp. or globoid cell leukodystrophy.mp. or globoid cell leukodystrophy/

PEDIATRICS Volume 148, number 2, July 2021 1 SUPPLEMENTAL TABLE 4 Continued

Search Terms 5e. Respiratory Respiratory Disease*.mp. or respiratory tract disease/ or Cystic fibrosis.mp. or cystic fibrosis/ or Pulmonary fibrosis.mp. or lung fibrosis/or lung dysplasia/ or Broncho-pulmonary dysplasia*.mp. or lung fibrosis.mp. or Pulmonary hypertension.mp. or pulmonary hypertension/ or congenital central hypoventilation syndrome/ or Central hypoventilation syndrome.mp. or Congenital diaphragmatic hernia*.mp. or congenital diaphragm hernia/ or Bronchiectasis.mp. or bronchiectasis/ or Pulmonary hypoplasia.mp. or lung hypoplasia/ or Pulmonary hypoplasia.mp 5f. Congenital unknown disease.mp. or Congenital abnormalities.mp. or congenital disorder/ or chromosomal abnormalities.mp. or chromosome aberration/ or neurologic disease/ or Disorders of brain development.mp. or brain disease/ or Disorders of brain development.mp. or abnormal brain development.mp. or Holoprosencephaly.mp. or holoprosencephaly/ or Dandy-Walker.mp. or Dandy Walker syndrome/.mp. or hydrocephalus/ or Hydrocephalus.mp. or Schizencephaly.mp. or schizencephaly/ or Neurocutaneous syndromes.mp. or neurofibroma/ or neurofibromatosis/ or NF1.mp. or neurofibromatosis type 1/ or neurofibromatosis/ or NF2.mp. or neurofibromatosis type 2/ or Connective tissue disorders.mp. or connective tissue disease/ or Neonatal marfan.mp. or Metabolic bone disease.mp. or metabolic bone disease/ or Skeletal dysplasia.mp. or bone dysplasia/ or Syndrome* without a name.mp. or / or genetic disorder*.mp. or or neurodegenerative disorder*.mp. or trisomy 13/ or trisomy 18/ or partial trisomy 13/ or trisomy.mp. or trisomy/ or trisomy/ or trisom*.mp. or neurologic disease/ or neurologic disease*.mp. or anencephaly.mp. or anencephalus/ 5g. Cardiac cardiovascular disease.mp. or cardiovascular disease/ or cardiovascular diseases*.mp. or cyanotic heart disease/ or Congenital cyanotic heart disease.mp. or cardiac arrhythmia.mp. or heart arrhythmia/ or cardiac arrhythmia*.mp. or cardiovascular disease.mp. or cardiovascular disease/ or Congenital cyanotic heart disease.mp. or Congenital heart disease.mp. or congenital heart disease/ Valvular heart disease.mp. or valvular heart disease/ or cardiomyopathy/ or Cardiomyopathy.mp. or Hypoplastic left heart syndrome.mp. or hypoplastic left heart syndrome or Hypoplastic right heart syndrome.mp. or hypoplastic left heart syndrome/ or cardiac arrhythmia.mp. or heart arrhythmia/or Pulmonary hypertension.mp. or pulmonary hypertension/ or cardiomyopathies.mp. or cardiomyopathy/ 5h. Palliative dying.mp. or death.mp. or death/ or terminal.mp. or life threaten$.mp. or life limit$.mp. or palliative.mp. or end of life.mp. 6. (4 AND 1 condition listed in 5) 7. (3 AND 6) PEHO, progressive with edema, hypsarrhythmia and optic atrophy syndrome.

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