IPF Care, a support program for patients with idiopathic pulmonary fibrosis in the UK

Background: The idiopathic pulmonary fibrosis (IPF) Care program provides long-term support and education to patients receiving pirfenidone (PFD) in the UK. Through patient-managed discussions with nurses, IPF Care supports patients living with their condition to help them manage adverse events (AEs) and adhere to therapy. Objective: To evaluate patient feedback and satisfaction with the UK IPF Care program focusing on program discontinuation rates, discussion topics and AE management. Methods: Data analyzed included: rates and reasons for program discontinuation; frequency, duration and topics of phone calls with IPF nurses; results from an 8-question patient satisfaction survey. Results: Of the 465 patients enrolled, 332 (71%) remained in the program at 18 months with 49% receiving maintenance therapy (a stable PFD dose). The most common reasons for program withdrawal were discontinuation of PFD (16%) and death (11%). Of 823 calls from 239 patients, frequently discussed topics included AE management, test results, oxygen and homecare/drug delivery. 140/239 (59%) patients reported at least 1 AE, early in treatment. The majority, 66%, remained on maintenance therapy and 13% discontinued treatment. Patient satisfaction ratings were high noting that IPF Care provided a feeling of control, enhanced expectations and confidence in disease management. As a result of IPF Care, patients felt they were more likely to stay on treatment longer and that the program would be useful to other patients on PFD. Conclusions: There is high satisfaction and a low rate of discontinuation for patients enrolled in IPF Care in the UK, highlighting the value of the advice and support patients receive in the program.