Pediatric and Adult Cystic Fibrosis Programs Collaborate on Patient Care
Fifty years ago most of the children diagnosed with cystic fibrosis never made it past elementary school. Today, 40 percent of the national CF patient population is over the age of 18. With the life span of patients increasing so does the need for treatment programs specifically geared to the medical needs of adults.
Over two hundred adults with cystic fibrosis are currently being treated at Stanford, making it one of the largest centers in the country. According Program Director David Weill MD, “Adult patients outnumber the children at our Center.” Weill, who is also the Medical Director of the Lung and Heart Lung Transplant Program, runs the program assisted by pulmonologists, Paul Mohabir MD, Gundeep Dhillon MD, and Rama Sista MD. Nurse practitioners Camille Washowich and Elika Derakshandeh coordinate the inpatient service. It’s a team whose combined experience allows for flexibility and a system where patients are not dependent on one physician.
Care for adults initially evolved out of the pediatric CF program at Lucile Packard Children’s Hospital. Weill and his team continue to work closely with the LPCH and Rick Moss MD who leads the program with Carlos Milla MD. Although the shift to the adult hospital typically occurs between the ages of 18-21, an elaborate transition plan begins in childhood. As patients grow from children into teenagers they slowly become more familiar with their treatments and medications. They visit the doctor alone and participate in discussions about sexuality and drugs.
A Smooth Transition
“The patient’s primary physician changes, and where they get hospitalized changes from Packard to Stanford, but the ancillary team that treated that patient since he or she was a child remains the same,” explained Moss, who has worked with CF patients at LPCH and SUH since 1981. A pediatric coordinator transitions the patient to an adult coordinator but since the social worker, nutritionist, and respiratory therapist that he or she is familiar and comfortable with are there, the transition is easier. The entire group meets weekly to discuss the patients at Stanford and Packard, along with those seen at the clinic. Two nurse practitioners act as point people for the adult patients and work with attending faculty.
The high quality of care is reflected in the increased survival rate for Stanford CF patients. While the median life span for adults with cystic fibrosis in the US is 37, at Stanford that is stretched to over 40 years of age. Drs. Weill, Moss and Milla’s joint commitment to providing the best all around care possible has led to plans for establishing a joint cystic fibrosis and diabetes clinic. In addition, incorporating subspecialists from gastroenterology, endocrinology, and vascular medicine and continued clinical and research collaboration are high on the agenda. All of these factors will work in tandem to increase communication and improve the quality of life for adults living with cystic fibrosis.