Appeal type: Medical necessity
Decision: Overturned

Diagnosis: Sickle cell disease
Treatment: Private Duty Nursing With A Registered Nurse; 10 Hours Per Day 7 Days Per Week; A Total of 70   Hours Per Week
The insurer denied the Private Duty Nursing With A Registered Nurse; 10 Hours Per Day 7 Days Per Week; A Total of 70   Hours Per Week
The denial is overturned. 

The patient is a male infant with medical history significant for sickle cell disease, an as-yet undiagnosed neurologic condition resulting in irritability and hypotonia with concern for possible seizures, dysmorphic features including facial asymmetry, poor oral feeding and gastroesophageal reflux status post gastrostomy tube placement and dependence for all nutrition and fluids, and multiple congenital abnormalities. He receives feedings every three hours around-the-clock via feeding pump.

The patient lives with his mother, his sole caregiver. His father is trained in his care, but is not available due to work obligations out of town. His mother has worked two jobs in the past and must return in order to make ends meet: Monday through Friday 35 hours weekly (per his mother, eight hours daily) with four hours total commute time, and Saturday/Sunday variable hours totaling minimum 32 hours monthly.

The patient's skilled nursing needs include gastrostomy tube care and feedings, maintenance of reflux and aspiration precautions, monitoring for possible seizure activity, monitoring for episodes of irritability and discomfort with adjustments in feeding or position to resolve, and medication administration.

Note: The topic of this review is for ten hours per day seven days per week for a total of 70 hours per week.  However, the request form the attending physician is for 20 hours per day for a total of 120 hours per week.

Yes, the Private Duty Nursing With A Registered Nurse; 10 Hours Per Day 7 Days Per Week; A Total of 70 Hours Per Week is medically necessary.

According to the American Academy of Pediatrics Guidelines for Home Care of Infants, Children, and Adolescents with Chronic Disease, "comprehensive planning should minimize physical and emotional risk to the patient, adverse effects on family members, or unforeseen financial burdens." (1) Further, "the goal of a home health care program for infants, children, or adolescents with chronic conditions is the provision of comprehensive, cost-effective health care within a nurturing home environment that maximizes the capabilities of the individual and minimizes the effects of the disabilities." (1)

This young male infant has a number of skilled needs as a result of and in addition to his sickle cell disease, neurologic disability, and possible other genetic condition as described above. He requires gastrostomy tube feedings around-the-clock every three hours with close monitoring for reflux, aspiration, feeding intolerance, and increased irritability, with appropriate adjustments as needed. He is at risk for seizures because of his neurologic condition and irritability. His mother works more than full time outside of the home in order to maintain independence and provide for her son. It would be unsafe and inappropriate for her to provide more than four hours of care daily with her current schedule. The level of care that this infant requires is far beyond what can be provided by regular babysitters in the home or in a daycare situation. Further, outside daycare is not appropriate because of his risk of infection and sepsis (due to sickle cell disease). Based on this infant's complex medical condition, high risk for infection and at risk for seizures and aspiration, the requested skilled nursing care 10 hours per day is medically necessary and appropriate.