Care Coordination of Nusinersen

Situation: Development of a sustainable care coordination model for nusinersen.

Background: Spinal muscular atrophy (SMA) effects 1 in 6,000 to 1 in 10,000 live births in the US, a rare and often fatal genetic disease that affects muscle strength and movement. Severity of the disease can range from a child that will never sit up independently to a child that will lose ambulation by puberty. Nusinersen is the first FDA approved drug in the treatment of SMA. Our program has been active since FDA approval in December 2016. We began with approximately 20 patients and have grown to over 60 patients. Medication is given by lumbar puncture (LP) in the operating room, interventional radiology, the clinic, or infusion center depending on sedation and clinical needs. Patients receive nusinersen over 4 loading doses within 60 days, and then receive an LP every 4 months for the rest of their lives. Receiving the LP requires care coordination with admitting, the neurology clinic, the care coordinator assistant, pharmacy, specialty pharmacy, and manufacturer prior to every LP.

Program details: Upon diagnosis and development of treatment plan, the care coordination assistant completes a benefits investigation and begins prior authorization. A baseline physical function assessment is obtained prior to the start of drug that will help to show any function gained or maintained while on nusinersen. During maintenance, follow-up visits are scheduled every 4 months for these patients where they are seen by the neurologist and physical therapy. Visits must be coordinated on a day that the therapist is in clinic to ensure physical function testing can be completed for continued authorization of the drug.

Care coordination framework: The process is managed primarily by a care coordinator assistant under the supervision of a registered nurse care coordinator. The care coordinator assistant ensures that all visits are scheduled within 30 days prior to LP, the LP is scheduled in the appropriate location, authorization for the drug is obtained, the procedure team is aware of LP to obtain authorization for the lumbar puncture, and the drug has arrived prior to the day of LP. Regular communication with all necessary departments is imperative to ensure that drug is delivered on time to prevent delays in patient care. Maintaining a master flowsheet with all necessary authorization information, last physical function assessment date, and dates of LP provides all the necessary information to coordinate care for these patients in one central location and allows access to all necessary disciplines.

Challenges and obstacles included: payor developing policies, orders transferring across departments in the electronic health record, admissions, purchasing methods, departmental ownership of different authorization pieces, and payor changes prior to next dose needing to ship.