Around 50% of patients with IPF report negative influence of symptoms on relationships
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Key takeaways:
- An online survey was created to capture the burden of IPF.
- Patients frequently reported shortness of breath.
- IPF and supplemental oxygen use negatively impact ability to perform enjoyable hobbies and activities.
BOSTON — When presented with the statement, “I have trouble keeping up with my family, friends, children and/or grandchildren because of IPF” via online survey, 49% agreed, according to a poster presented at the CHEST Annual Meeting.
“Antifibrotics have been available in the U.S. for a decade, yet people with IPF still have substantial burden of disease which impacts their quality of life,” Camilla S. Graham, MD, MPH, vice president of medical affairs at PureTech Health, told Healio.
Using interview responses from 16 patients (median age, 69 years; 38% men) with IPF, Graham and colleagues created an online survey to gain a better understanding of the burden of IPF and assessed Likert scale-scored responses from 90 U.S. patients (median age, 72 years; 52% men; 89% white).
When asked about antifibrotic exposure, 34% reported never receiving an antifibrotic, whereas the remainder had either used nintedanib only (32%), pirfenidone only (23%) or both of these antifibrotics via switch (10%).
GERD was the most frequently reported comorbidity, impacting 42% of patients, followed by heart conditions (38%), anxiety/depression (31%) and obstructive sleep apnea (26%), according to the poster.
Additionally, researchers found reports of supplemental oxygen use from over half of the study population (54%), with 27% noting use “at all times.”
Among the IPF symptoms reported, those impacting a high proportion of patients included shortness of breath/trouble breathing (87%; 41% with scores signaling this symptom as “very burdensome”), fatigue/tiredness (78%; 47% with “very burdensome” scores) and cough (77%; 30% with “very burdensome” scores), according to the poster.
“We were struck by the degree to which certain symptoms were considered very burdensome,” Graham told Healio.
The poster also highlighted several symptoms reported less frequently by patients:
- muscle and joint aching (40%; 42% with “very burdensome” scores);
- sleeping challenges (30%; 37% with “very burdensome” scores);
- unintentional weight loss (24%; 14% with “very burdensome” scores);
- chest pain (23%; 24% with “very burdensome” scores);
- loss of appetite and/or weight loss (23%; 38% with “very burdensome" scores); and
- rounded and swollen fingertips/toes (13%; 17% with “very burdensome" scores).
The online survey also asked patients to score various statements centering around the consequences of living with IPF symptoms. Researchers noted that agreement with the statement was identified through scores of 5 to 7 on a scale of 1 to 7.
According to the poster, the statement with the highest percent of patients reporting agreement (49%) read, “I have trouble keeping up with my family, friends, children and/or grandchildren because of IPF.”
Other statements that one-third or more of patients agreed with captured struggles with carrying out basic housework jobs (47%), an inability to perform hobbies and activities (44%), impaired independence (39%) and an inability to travel (33%) all due to IPF.
The last section of the survey was similar to the one above involving agreement with statements but targeted the 49 patients who reported supplemental oxygen use.
When presented with the statement, “Oxygen helps improve my IPF symptoms a lot,” researchers found that most of these patients (78%) indicated agreement.
As previously seen in the entire IPF survey population, a little over half (53%) of the group using supplemental oxygen reported that requirement of this treatment has made them unable to perform enjoyable hobbies and activities, according to the poster.
Other consequences resulting from the need for oxygen included patients feeling embarrassed about outside oxygen use (33%) and leaving the house becoming a rare event (27%).
“We need to focus on the burden of IPF and consequences on people’s lives, not just the existence of adverse events,” Graham told Healio. “The requirement for supplemental oxygen is a major inflection point in the natural history of disease progression for people with IPF.
“People would benefit from more research on powerful yet discrete machines to deliver oxygen, and we need improved mechanisms to reimburse for state-of-the-art oxygen delivery systems that help maintain people’s quality of life,” Graham said.
When asked how these results will impact clinical studies, Graham highlighted some questions that patients and providers have.
“Patients and providers would like to know whether an investigational drug allows someone to feel and function better, and whether it delays or reduces the need for supplemental oxygen,” Graham told Healio. “We need better tools to capture these effects in clinical trials.”
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.