Question

Generate a list of professionals who should be involved in the care of the following disorders: asthma, cystic fibrosis, chronic lung disease of prematurity, idiopathic congenital central hypoventilation syndrome, tracheoesophageal fistula with esophageal atresia, tracheoesophageal fistula without esophageal atresia, and congenital diaphragmatic hernia.

Answer

 

  • Asthma: Regular pediatric preventative care; nutritionist and ophthalmologist in children taking corticosteroids; and a specialist (pediatric pulmonologist/immunologist) in the event of life-threatening exacerbation, atypical signs and symptoms, other asthma complicating problems, or additional testing.
  • Cystic fibrosis: Cystic fibrosis care center (visits every 1-3 months) including the following team members: pediatric pulmonologist, pediatric gastroenterologist, clinical nurse, respiratory therapy, dietetics and nutrition, and medical social work; a local pediatrician; local pulmonologist; otorhinolaryngologist (if needed); and evaluation by a transplant center (if needed).
  • Chronic lung disease of prematurity (CLD): General pediatrician or nurse; pediatric pulmonologist or pediatric intensivist; otolaryngologist; ophthalmologist; audiologist; pediatric dentist; occupational therapist; speech pathologist; pediatric registered dietician; and a developmental pediatrician.
  • Idiopathic congenital central hypoventilation syndrome (CHHS): Skilled nursing care; pediatrician; local pulmonologist; pulmonologist at a center with expertise; pediatric cardiologist (if needed); developmental examination; ophthalmologic exam; pediatric otolaryngologist; speech therapist; pediatric gastroenterologist (if necessary); pediatric neurologist (if warranted); neuropsychologist; tutor/learning center; and occupational and recreational therapists.
  • Tracheoesophageal fistula with esophageal atresia: skilled-in home nursing following surgeries; multidisciplinary team; pediatrician; pediatric registered dietician; occupational therapist; speech therapist; pediatric gastroenterologist; pediatric pulmonologist; pediatric surgeon; special education services; and a psychologist.
  • Tracheoesophageal fistula without esophageal atresia: surgery and then few needs following this repair other than long-term anti-reflux medications.
  • Congenital diaphragmatic hernia: pediatric surgeon; pediatrician; pediatric pulmonologist; pediatric gastroenterologist; pediatric registered dietician; developmental pediatrician; occupational therapist; speech therapist; neuropsychologist; special education/tutoring; developmental pediatrician; and an audiologist.
  • Were you able to locate additional professionals not listed in the sample response? What about other items that may be included in the life care plan?

 

Engleman. (2011). Chapter 17: ” Life Care Planning for the Child with Asthma and Other Chronic Respiratory Conditions”, in Pediatric Life Care Planning and Case Management, Second Edition. (pages 435-464)

Engleman. (2004). Chapter 21:  “Life Care Planning for the Child with Asthma and Other Chronic Respiratory Conditions”, in Pediatric Life Care Planning and Case Management, First Edition. (pages 487-528)

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