Monitoring
Because prion diseases are terminal, there are no disease-specific indications for blood monitoring; however, patients should be followed up to make sure their symptoms are being successfully managed.
Referrals should also be made to ensure that patients and families are able to cope with the emotional impact of this disease. Counseling for families is highly recommended, and additional considerations may need to be made for families afflicted with genetic forms of prion disease. Social workers and case managers should also be involved in establishing palliative care and homecare needs.
Doctors should stress the importance of autopsy and facilitate the process to ensure that a definitive diagnosis is made after the patient has died.
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