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The Special Needs of Adults with Cystic Fibrosis
Cystic fibrosis typically worsens with age due to complications associated with multi-resistant bacteria, the onset of diabetes and pancreatic insufficiency. At UCLA's adult clinic, patients receive care from a multidisciplinary team of specialists with experience in this phase of the disease. Mental health and psychosocial support become increasingly important to help these patients simultaneously manage adult responsibilities, such as educational and job pursuits and family relationships. Patients considering pregnancy are referred to reproductive health specialists. Care is coordinated so the patient can see a number of specialists in one visit to the clinic.
Core Cystic Fibrosis Team:
- Pulmonary and Critical Care Medicine specialists
- CF Nurse specialist
- Social worker
- Respiratory therapist
Patients are referred to other specialists, such as endocrinologists, gastroenterologists and infectious disease experts, as needed.
Transition from Pediatric Care
A major focus in the care of cystic fibrosis patients today centers on smoothing the transition from pediatric to adult care. The transition period, occurring in late adolescence or early adulthood, can be a particularly vulnerable time. Gaps in care or problems in adherence to therapies can result in setbacks to a patient's health. Nationwide, as many as 60 percent of patients experience gaps in medical care, health insurance coverage or both as they move from adolescence to adulthood.
UCLA's Transition Care Program was established to serve patients with chronic conditions who are transitioning from pediatric to adult programs. The network of resources includes Cystic Fibrosis Foundation-approved patient education and support programs to assist patients in assuming responsibility for their health. Patients at UCLA are provided with extensive educational opportunities beginning in adolescence. Patients at UCLA are further assisted with insurance coverage issues, a significant factor in maintaining stable health into adulthood.
Cystic fibrosis patients who become candidates for lung transplantation are referred to UCLA's outstanding lung transplantation program, one of the largest in the region. Care is coordinated between the lung transplant and cystic fibrosis teams.
Similarly, cystic fibrosis patients in need of liver transplantation are referred to UCLA’s exceptional liver transplant program.
Awards and Accolades:
2019 Great Strides Cup
Cystic Fibrosis Foundation National Outstanding Partnership Award 2019
Cystic Fibrosis Foundation National Outstanding Partnership Award 2020
More information for patients:
Cystic Fibrosis Foundation: CFF.org
Cystic Fibrosis Modulator Therapies: https://www.cff.org/managing-cf/cftr-modulator-therapies
Clinical Trials for emerging therapies: https://apps.cff.org/trials/finder/