Poorer IPF quality of life reports in community pulmonary practices vs. ILD centers
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Key takeaways:
- Researchers found differences between the two settings when evaluating the number of patients who agreed with quality-of-life statements.
- Clinician mentions of treatment options also differed by setting.
BOSTON — Based on patient responses, quality of life with idiopathic pulmonary fibrosis was worse among those treated in community pulmonary practices vs. interstitial lung disease centers, according to data at the CHEST Annual Meeting.
“We do not know how IPF care differs between ILD centers and community practices to understand why people receiving care in community practices would report a poorer quality of life, but these data suggest that exploring people’s activities and social interactions may make medical care teams aware of daily challenges faced by people with IPF and allow them to provide enhanced support,” Camilla S. Graham, MD, MPH, vice president of medical affairs at PureTech Health, told Healio.
Using interview responses from patients with IPF, Graham and colleagues created an online survey and analyzed patient responses based on where they were being treated — either ILD centers or community pulmonary practices (CPPs) — to observe whether there are differences in HCP communications, disease management and perceptions of quality of life between the two groups.
This study included responses from 45 patients with IPF treated at ILD centers (median age, 72 years; 49% men; 91% white; 78% Medicare) and 45 patients with IPF treated in CPPs (median age, 72 years; 56% men; 87% white; 60% Medicare), according to the presentation.
Researchers did not report any statistically significant differences in antifibrotic exposure between the ILD centers group and the CPP group.
Among those treated at ILD centers, 35% reported never receiving an antifibrotic, whereas the remainder had either used only nintedanib (Ofev, Boehringer Ingelheim; 29%), only pirfenidone (Esbriet, Genentech; 27%) or both these antifibrotics via switch (9%), according to the presentation. Among those treated in CPPs, 33% reported never receiving an antifibrotic, and the rest of the cohort either used nintedanib only (36%), pirfenidone only (20%) or both via switch (11%).
Supplemental oxygen was used by a larger proportion of patients in the CPP group vs. the ILD centers group (60% vs. 49%), and more patients in the CPP group noted use “at all times” (30% vs. 23%).
When presented with five options capturing different avenues on where to get information on IPF, the most useful avenue reported by both groups was their pulmonologist (ILD centers, 92%; CPPs, 89%). The options with fewer patients reporting them as the most useful avenue included the internet/Google (ILD centers, 46%; CPPs, 36%), IPF/pulmonary fibrosis support groups (44%; 36%), their primary care provider (30%; 39%) and nurses (14%; 20%).
The survey also asked patients whether their HCP mentioned the two current antifibrotic treatment options. In the ILD center group, 76% reported hearing about both Esbriet and Ofev from their HCP, whereas a smaller proportion (56%) of the CPP group reported HCP mentions of these two options, according to the presentation.
Most of the remaining patients from the CPP group (36%) reported HCP mention of only one antifibrotic option, whereas this was not often the case in the ILD center group (11%). Researchers observed small proportions of patients from both groups reporting no HCP mention of the treatment options (ILD centers, 13%; CPP, 9%).
When asked how they felt about the communication and information they received from the HCP that diagnosed them with IPF, a response of “very satisfied” was reported by 67% of patients being treated at ILD centers and 56% of patients being treated in CPPs.
“The majority of people who reported receiving care in academic ILD centers and community pulmonary practices described themselves as very satisfied with their communications with their doctors around IPF diagnosis and management, which gives me a lot of hope for the management of IPF in the future,” Graham told Healio.
In both groups, researchers noted comparable proportions of patients who reported trying supplemental oxygen (ILD centers, 58%; CPPs, 62%), Ofev (38%; 47%), Esbriet or generic pirfenidone (36%; 31%) and steroids/prednisone (both 31%).
In contrast, more patients in the ILD center group reported trying exercise to manage their IPF than the CPP group (73% vs. 56%), and this outcome was also found when looking at how many patients tried going to pulmonary rehabilitation (42% vs. 27%), according to the presentation.
The final part of the online survey asked patients to score various statements centering around their quality of life. Researchers identified agreement with the statements through scores of 5 to 7 on a Likert scale of 1 to 7.
When faced with the statement, “I have trouble keeping up with my family, friends, children and/or grandchildren because of IPF,” 60% of CPP patients expressed agreement, and this was significantly higher than the 38% of ILD center patients who agreed, according to the presentation.
The proportion of patients who agreed that IPF makes it difficult to carry out basic housework jobs also significantly differed between the groups, with more patients agreeing in the CPP group (58% vs. ILD center, 36%).
“We were surprised that a higher number of people receiving care in community practices agreed that IPF had negatively impacted their lives compared to those in ILD centers,” Graham told Healio.
Of the remaining eight statements, a higher proportion of patients in the CPP group vs. ILD center group expressed agreement for seven of them.
These statements captured the inability to perform hobbies and activities (51% vs. 38%), impaired independence (47% vs. 31%), the inability to travel (36% vs. 31%), having to stop work earlier than expected (29% vs. 24%), difficulty keeping up with personal hygiene (27% vs. 11%), impaired relationships with family and friends (24% vs. 13%) and impaired romantic relationships (24% vs. 11%) all due to IPF.
“People with IPF know they have a terminal disease, and they want their remaining time to be as high quality as possible,” Graham told Healio. “We need better measures to integrate into clinical trials that reflect the patient experience and the consequences of their disease and treatments to better assess whether novel drugs in development improve clinical progression and preserve quality of life.”
Reference:
- PureTech presents research highlighting burden of idiopathic pulmonary fibrosis and use of a Bayesian statistical analysis for LYT-100 (Deupirfenidone) at CHEST 2024 Annual Meeting. https://investors.puretechhealth.com/news-releases/news-release-details/puretech-presents-research-highlighting-burden-idiopathic#_ftn1. Published Oct. 9, 2024. Accessed Oct. 22, 2024.