APPENDIX

Clinical Examples of CMC

DomainType of ComplexitySubtypeChild With Severe Neurologic ImpairmentsChild With Multiple Congenital AnomaliesChild With a Complex Cardiac ConditionChild With Severe Autism
NeedsMedical problemsOrgan systemBrain (seizures, global developmental delay, abnormal tone, behavioral problems, visual/hearing impairment); respiratory (chronic and recurrent pneumonia, reactive airways disease); ear, nose, and throat (sialorrhea, upper airway obstruction); gastrointestinal (gastroesophageal reflux, oromotor feeding problems, constipation); musculoskeletal (scoliosis/contractures)Condition- and phenotype-specificBrain (eg, at risk of developmental delay); respiratory (chronic lung disease); gastrointestinal (gastroesophageal reflux disease, failure to thrive)Brain (seizures, global developmental delay, abnormal tone, behavioral problems)
MedicationsAntiepileptic drugs; bronchodilators; inhaled corticosteroids; gastric acid suppressants; promotility agents; antispasticity agents; antibiotics; laxativesCondition- and phenotype-specificGastric acid suppressants; promotility agents; diuretics; cardiac medications (eg, anti-arrhythmic agent)Antiepileptic medication; other neuropsychiatric drugs (eg, antipsychotic medications, mood stabilizers, etc)
SurgeriesNissen fundoplication; scoliosis repair; salivary gland ligation; ventriculoperitoneal shunt insertionCondition- and phenotype-specific≥1 complex cardiac surgery; Nissen fundoplication
Other, family-identified problemsFinancial burden; respite; education; supportFinancial burden; respite; education; supportFinancial burden; respite; education; supportFinancial burden; respite; education; support
ConditionsCCCs that are severe and/or associated with fragilityKnown: congenital; acquired; unknown (eg, undiagnosed or undescribed syndrome)Brain tumors; congenital brain anomalies; chromosomal anomaly (eg, trisomy 21); other genetic syndrome (eg, Rett syndrome, tuberous sclerosis, etc); acquired brain injury; neurodegenerative metabolic disease (eg, Krabbe disease); hypoxic ischemic encephalopathy; cerebral palsy with global developmental delay; etcChromosomal anomalies; skeletal dysplasias; overgrowth syndromes; storage disorders; congenital connective tissue disorders; sequences; associations; teratogens; unknown; etcHypoplastic left heart syndrome; double-inlet left ventricle, other congenital heart diseases; heart transplantation; etcMay be associated with other conditions (eg, tuberous sclerosis, other neurologic conditions)
Functional limitationsDevelopmental disabilityMotor domainUnable to sit and/or walk and require seating and ambulatory assistive devicesCondition- and phenotype-specificCondition- and child-specific but global developmental disability common in some (eg, hypoplastic left heart); exercise limitation commonVariable
Speech domainUnable to verbally and/or nonverbally communicate; require assistive communicative devicesCondition- and phenotype-specificVariableWide range of issues in both verbal and nonverbal domains characteristic
Feeding domainUnsafe and/or unable to feed normal child foods/liquids, which requires alterations of food textures and typeCondition- and phenotype-specificNeed for supplemental nutrition/hypercaloric intake commonVariable
Social domainVariable; integration and participation in community-based activities can be challengingVariable; integration and participation in community-based activities can be challengingVariable; integration and participation in community-based activities can be challengingImpairments in social activities (eg, reciprocal interactions) characteristic
Technology dependenceEnterostomy tubes; suction machines; tracheostomy tubes; ventriculoperitoneal shunts; feeding pumps; home oxygenCondition- and phenotype-specificVariable but could include one or more of the following: enterostomy tubes, tracheostomy tubes, home oxygen, implantable cardiac devices, etcVariable but can be completely reliant on others for activities of daily living
Health care utilizationProvidersMedicalPrimary care provider (eg, pediatrician); neurologist; gastroenterologist; pulmonologist; otolaryngologist; developmental pediatrician; general surgeon; orthopedic surgeon; neurosurgeon; hospitalistPrimary care provider (eg, pediatrician); large number of subspecialists characteristicPrimary care provider (eg, pediatrician); cardiologist; cardiac surgeon; pulmonologist; large number of other; specialists commonPrimary care provider (eg, pediatrician); neurologist; developmental pediatrician; psychiatrist
Other health professionalsPhysiotherapist; occupational therapist; social worker; speech/language pathologist; dietician; nurses; pharmacistPhysiotherapist; occupational therapist; social worker; speech/language pathologist; dietician; nurses; pharmacistPhysiotherapist; occupational therapist; social worker; speech/language pathologist; dietician; nurses; pharmacistSocial worker; physiotherapist; occupational therapist; speech/language pathologist; nurses; pharmacist; mental health professionals
Health servicesHospitalEmergency department; outpatient clinics; inpatient stays; laboratory services; diagnostic imagingEmergency department; outpatient clinics; inpatient stays; laboratory services; diagnostic imagingEmergency department; outpatient clinics; inpatient stays; laboratory services; diagnostic imagingHospital use less likely to be inpatient-based but still common; use of extensive psychiatric services common both in hospital and, in particular, in the community
CommunitySchool; home/congregate care; respite care; rehabilitation services; transitional careSchool; home/congregate care; respite care; rehabilitation services; transitional careSchool; home/congregate care; respite care; rehabilitation services; transitional careSchool; home/congregate care; respite care; rehabilitation services; transitional care
Interrelated ServicesSpecifics may be jurisdiction-specific, but cross-sectorial care is almost universalFamily/social support; mental and behavioral health; housing; transportation; faith-based/spiritualFamily/social support; mental and behavioral health; housing; transportation; faith-based/spiritualFamily/social support; mental and behavioral health; housing; transportation; faith-based/spiritualFamily/social support; mental and behavioral health; housing; transportation; faith-based/spiritual
  • These examples are for illustrative purposes to emphasize some of the types of children and the spectrum of clinical and systems issues that characterize CMC.