Perspectives of People Living with Idiopathic Pulmonary Fibrosis: A Qualitative and Quantitative Study

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Graham, Brianna Bisson, Jessica Shore, Emily Pardy, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6190511/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 08 May, 2025 Read the published version in BMC Pulmonary Medicine → Version 1 posted 12 You are reading this latest preprint version Abstract Background: The antifibrotic therapies, pirfenidone and nintedanib, have been approved since 2014 for idiopathic pulmonary fibrosis (IPF), but in the United States only a quarter of people living with IPF have ever been exposed to an antifibrotic. Understanding the burden and consequences of the disease and its treatment from the perspective of people living with IPF may facilitate improved education and outreach for them and their providers. Methods: Qualitative interviews with people living with IPF explored perspectives on the diagnosis and management of IPF. Transcripts were analyzed to derive themes and topics, and illustrative quotes were selected for presentation. Data were developed into a 74-item on-line survey taken by additional people living with IPF. Quantitative survey data were analyzed with 95% confidence intervals and Z tests. Results: Sixteen people living with IPF underwent qualitative interviews. Direct quotes were used to derive and support themes, and survey stimuli are presented. Ninety additional people living with IPF responded to the on-line survey. 52% of survey participants were male, 54% used supplemental oxygen, and 34% had never been exposed to an antifibrotic. Top sources of information about their IPF diagnosis were their healthcare provider, the internet, and support groups. Most participants had one or more of shortness of breath, fatigue, or cough and over 40% described these symptoms as very burdensome. The most common reason for not starting an antifibrotic was, “I am waiting to start treatment until my symptoms worsen.” For those treated with antifibrotics, (78%) agreed with a statement that their antifibrotic gives them hope even though around 90% had at least one side effect. Conclusions: Most individuals living with IPF experienced significant challenges due to their disease and its treatment, that substantially impacted their quality of life. A better understanding of these challenges can facilitate patient-centered and shared decision-making, ultimately enhancing outcomes and satisfaction for people living with IPF. Idiopathic pulmonary fibrosis quality of life qualitative research antifibrotic therapy oxygen therapy Full Text Additional Declarations Competing interest reported. C.G., E.P, B.B. and F.S are current or former employees of PureTech Health and L.L and T.K are consultants to PureTech Health. Supplementary Files AdditionalFile1QualitativeStudyInterviewGuide.docx AdditionalFile2SurveyQuestionnaire.docx Cite Share Download PDF Status: Published Journal Publication published 08 May, 2025 Read the published version in BMC Pulmonary Medicine → Version 1 posted Editorial decision: Revision requested 06 Apr, 2025 Reviews received at journal 06 Apr, 2025 Reviews received at journal 04 Apr, 2025 Reviews received at journal 01 Apr, 2025 Reviewers agreed at journal 28 Mar, 2025 Reviewers agreed at journal 27 Mar, 2025 Reviewers agreed at journal 27 Mar, 2025 Reviewers invited by journal 26 Mar, 2025 Editor assigned by journal 25 Mar, 2025 Editor invited by journal 24 Mar, 2025 Submission checks completed at journal 24 Mar, 2025 First submitted to journal 24 Mar, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6190511","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":436922630,"identity":"ab7df8d8-71f3-431e-bf6f-36bff618f76a","order_by":0,"name":"Camilla S. 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C.G., E.P, B.B. and F.S are current or former employees of PureTech Health and L.L and T.K are consultants to PureTech Health.","formattedTitle":"Perspectives of People Living with Idiopathic Pulmonary Fibrosis: A Qualitative and Quantitative Study","fulltext":[],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":false,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":true,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":true,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-pulmonary-medicine","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pulm","sideBox":"Learn more about [BMC Pulmonary Medicine](http://bmcpulmmed.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pulm/default.aspx","title":"BMC Pulmonary Medicine","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Idiopathic pulmonary fibrosis, quality of life, qualitative research, antifibrotic therapy, oxygen therapy","lastPublishedDoi":"10.21203/rs.3.rs-6190511/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6190511/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003eThe antifibrotic therapies, pirfenidone and nintedanib, have been approved since 2014 for idiopathic pulmonary fibrosis (IPF), but in the United States only a quarter of people living with IPF have ever been exposed to an antifibrotic. Understanding the burden and consequences of the disease and its treatment from the perspective of people living with IPF may facilitate improved education and outreach for them and their providers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e Qualitative interviews with people living with IPF explored perspectives on the diagnosis and management of IPF. Transcripts were analyzed to derive themes and topics, and illustrative quotes were selected for presentation. Data were developed into a 74-item on-line survey taken by additional people living with IPF. Quantitative survey data were analyzed with 95% confidence intervals and Z tests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eSixteen people living with IPF underwent qualitative interviews. Direct quotes were used to derive and support themes, and survey stimuli are presented. Ninety additional people living with IPF responded to the on-line survey. 52% of survey participants were male, 54% used supplemental oxygen, and 34% had never been exposed to an antifibrotic. Top sources of information about their IPF diagnosis were their healthcare provider, the internet, and support groups. Most participants had one or more of shortness of breath, fatigue, or cough and over 40% described these symptoms as very burdensome. The most common reason for not starting an antifibrotic was, “I am waiting to start treatment until my symptoms worsen.” For those treated with antifibrotics, (78%) agreed with a statement that their antifibrotic gives them hope even though around 90% had at least one side effect.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions: \u003c/strong\u003eMost individuals living with IPF experienced significant challenges due to their disease and its treatment, that substantially impacted their quality of life. A better understanding of these challenges can facilitate patient-centered and shared decision-making, ultimately enhancing outcomes and satisfaction for people living with IPF.\u003c/p\u003e","manuscriptTitle":"Perspectives of People Living with Idiopathic Pulmonary Fibrosis: A Qualitative and Quantitative Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-04-02 12:00:34","doi":"10.21203/rs.3.rs-6190511/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-04-06T19:31:32+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-06T16:08:12+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-04T13:03:06+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-01T13:33:16+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"12304087864528120287920032286687893890","date":"2025-03-28T13:38:00+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"102259043882453548030376966817133486052","date":"2025-03-27T15:49:26+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"93700930690833404962183275591235084265","date":"2025-03-27T08:44:57+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-03-26T05:49:02+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-03-25T06:04:14+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-03-25T01:33:40+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-03-24T21:53:49+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pulmonary Medicine","date":"2025-03-24T21:52:45+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-pulmonary-medicine","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pulm","sideBox":"Learn more about [BMC Pulmonary Medicine](http://bmcpulmmed.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pulm/default.aspx","title":"BMC Pulmonary Medicine","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"84f9d912-43e7-4fd7-9b55-fc55bb901eb0","owner":[],"postedDate":"April 2nd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-05-12T16:05:29+00:00","versionOfRecord":{"articleIdentity":"rs-6190511","link":"https://doi.org/10.1186/s12890-025-03689-8","journal":{"identity":"bmc-pulmonary-medicine","isVorOnly":false,"title":"BMC Pulmonary Medicine"},"publishedOn":"2025-05-08 15:57:00","publishedOnDateReadable":"May 8th, 2025"},"versionCreatedAt":"2025-04-02 12:00:34","video":"","vorDoi":"10.1186/s12890-025-03689-8","vorDoiUrl":"https://doi.org/10.1186/s12890-025-03689-8","workflowStages":[]},"version":"v1","identity":"rs-6190511","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6190511","identity":"rs-6190511","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}