Patient journey and treatment patterns in adults with IPF based on health care data in Sweden from 2001 to 2015

Abstract

Background: For patients with idiopathic pulmonary fibrosis (IPF), there is limited real-world data on patient journey and treatment patterns. Aim: To explore predictors of early diagnosis and treatment initiation, and treatment patterns in IPF patients using linked data from Swedish registers and electronic medical records (EMRs). Population: A national cohort (C1) of 17,247 pulmonary fibrosis patients (ICD-10 code J84.1; no competing diagnosis) diagnosed between 2001 and 2015, and an EMR-based regional subset (C2) comprising 1755 IPF patients diagnosed between 2004 and 2017. The time from early disease symptoms to diagnosis, use of antifibrotic medications, time from diagnosis to initiation of anti-fibrotic treatment, and adherence, persistence and treatment length with pirfenidone were explored in these patients. Results: In C1, the median time to diagnosis from the first symptoms dyspnoea, cough and fatigue were 307, 563 and 639 days, respectively. Glucocorticoids were the most frequently prescribed medication. Less than 10% of patients undergoing or initiating treatment, used pirfenidone or nintedanib. Males had a higher probability of initiating anti-fibrotic treatment than females within a year of diagnosis. One-year persistence in pirfenidone patients was 42% in C1 and 25% in C2. Conclusion: Diagnosis of pulmonary fibrosis was delayed in patients with cough and fatigue, which are early symptoms of IPF. This, and lower than expected utilisation of anti-fibrotic medications, suggests missed opportunities for early disease diagnosis and treatment. The high rate of treatment discontinuation underscores the importance of supporting and guiding patients to persist with their medications to ensure an accrual benefit of treatment.

Treatment patterns, healthcare resource utilization, and costs among patients with idiopathic pulmonary fibrosis treated with antifibrotic medications in US-based commercial and Medicare Supplemental claims databases: a retrospective cohort study

“…Two recent studies of US Medicare and commercially-insured patients found that those who indexed on pirfenidone had higher adherence and longer persistence than patients who indexed on nintedanib; however, the mean follow-up time was less than half of that reported in this study and there are difference in the patient populations and patient selection criteria [ 25 , 26 ]. In an analysis of Swedish patients with IPF treated with pirfenidone, 24.7–41.8% (depending on data source) were persistent at 1 year compared with over 50% in our study; however, they used a 30-day gap to define discontinuation compared to the 60-day gap used in this study [ 27 ]. Treatment pattern analysis was not available on patients who indexed on nintedanib in the Swedish analysis due to low utilization during the study time frame.…”

“…Among the subset of patients with 12 months of follow-up data, all-cause and respiratoryrelated adjusted annual costs were similar regardless of To account for titration, an additional 7 days were added to the day supply of the first pirfenidone prescription claim, unless the supply was 207 pills for 30 days, which is correct if following the recommended titration schedule 3 Patients with a lung transplant before the end of a gap of ≥60 days were not considered to have discontinued 4 Among those with a lung transplant 5 Among those who discontinued treatment index medication; however, index drug-related costs were lower for patients who indexed on pirfenidone. Adherence to and persistence with antifibrotic therapies in IPF are important for maintaining treatment benefits and slowing lung function decline; however, there is limited existing data on treatment patterns as pirfenidone and nintedanib have only been recently approved to treat IPF in the US [25][26][27]. Two recent studies of US Medicare and commercially-insured patients found that those who indexed on pirfenidone had higher adherence and longer persistence than patients who indexed on nintedanib; however, the mean follow-up time was less than half of that reported in this study and there are difference in the patient populations and patient selection criteria [25,26].…”

“…Adherence to and persistence with antifibrotic therapies in IPF are important for maintaining treatment benefits and slowing lung function decline; however, there is limited existing data on treatment patterns as pirfenidone and nintedanib have only been recently approved to treat IPF in the US [ 25 – 27 ]. Two recent studies of US Medicare and commercially-insured patients found that those who indexed on pirfenidone had higher adherence and longer persistence than patients who indexed on nintedanib; however, the mean follow-up time was less than half of that reported in this study and there are difference in the patient populations and patient selection criteria [ 25 , 26 ].…”

Effectiveness of Pharmacist–Physician Collaborative Management for Patients With Idiopathic Pulmonary Fibrosis Receiving Pirfenidone

“…In real-world clinical practice, the rates of pirfenidone discontinuation owing to any reason and owing to ADEs at 12 months have been reported to be 35-75% (Ogura et al, 2015;Bando et al, 2016;Barratt et al, 2018;Ogawa et al, 2018;Uehara et al, 2018;Sköld et al, 2019) and 15-35% (Ogura et al, 2015;Bando et al, 2016;Galli et al, 2017;Barratt et al, 2018), respectively. In our study, the rates of pirfenidone discontinuation owing to any reason and owing to ADEs at 12 months were 51.7 vs. 33.3% and 35.0 vs. 33.3% in the conventional vs. collaborative management groups; these values were generally within the range reported previously.…”

What Patients With Idiopathic Pulmonary Fibrosis and Caregivers Want: Filling the Gaps With Patient Reported Outcomes and Experience Measures

“…9,10 Cough, dyspnea, and fatigue are frequently underrecognized in primary care, leading to delays in referral. 51,52 The use of generic PROMs and PREMs in primary care may bring dyspnea and cough to light, raising the suspicion and early detection of the disease.…”