Friday, June 22, 2007

Patient Registry Report (Part 2)

Clinic Guidelines

Many factors contribute to managing the disease successfully. Patients, their caregivers and the CF specialty team clinics should work together for optimal results. In order to determine how successfully this relationship is working, the CFF has developed guidelines for CF care. This includes:

-4 or more clinic visits per year at an accredited Care Center

-2 or more pulmonary function test per year

-respiratory cultures at least once a year

-creatinine level (yearly)

-glucose tolerance testing (yearly for pwCF older than 14)

-liver enzyme blood work (yearly)

In 2005, the CFF reported that the percentage of children who meet these requirements exceeds that of the number of adults. Perhaps this is because children are not yet responsible for their own health management. Only 2/3 of pediatric CF patients visit the clinic 4 or more times per year. Only 52% of adults visit a CF clinic 4 times per year.

Ideally, this trend should be reversed. As people with CF are growing older and more responsible for their own treatment of CF, they should be increasingly diligent to visit the doctor. By catching infections earlier, rather than later, the number of exacerbations could likely decrease. Also, as the disease progresses, more concurrent issues arise that need further medical involvement. Regular visits (4 or more) during the year to a CF center would do much to improve the overall health and wellness of CF patients.

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