Understanding the Patient Experience of Severe, Recurrent, Bilateral Nasal Polyps: A Qualitative Interview Study in the United States and Germany

To qualitatively explore patient experiences of severe, recurrent, bilateral nasal polyps (NP). A targeted literature review of published qualitative studies and online blogs describing patient experiences of NP was conducted. Semistructured concept elicitation interviews were conducted in the Unite...

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Veröffentlicht in:Value in health 2020-05, Vol.23 (5), p.632-641
Hauptverfasser: Hall, Rebecca, Trennery, Claire, Chan, Robert, Gater, Adam, Bradley, Helena, Sikirica, Mirko V., von Maltzahn, Robyn, Sousa, Ana R., Nelsen, Linda M.
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container_issue 5
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container_title Value in health
container_volume 23
creator Hall, Rebecca
Trennery, Claire
Chan, Robert
Gater, Adam
Bradley, Helena
Sikirica, Mirko V.
von Maltzahn, Robyn
Sousa, Ana R.
Nelsen, Linda M.
description To qualitatively explore patient experiences of severe, recurrent, bilateral nasal polyps (NP). A targeted literature review of published qualitative studies and online blogs describing patient experiences of NP was conducted. Semistructured concept elicitation interviews were conducted in the United States and Germany with participants ≥18 years with severe, recurrent, bilateral NP to explore their symptom experience and impacts on health-related quality of life (HRQoL; NCT03221192). A subset of 10 participants reported symptoms and impacts using a smartphone or tablet application (app) over a 10-day period. A paucity of qualitative evidence regarding patient experience of NP was identified from the literature or blog review. Twenty-seven participant interviews were conducted. Thirty-six symptoms were identified, including 7 primary symptoms (nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]) and 29 secondary symptoms (the most common were mucus/catarrh and nose bleeds [both n = 20 of 27]). Most symptoms were reported to vary both within and between days. Sixty impacts of severe NP were reported, including impacts on sleep (n = 22 of 27), physical functioning (n = 21 of 27), activities of daily living (n = 21 of 27), emotional well-being (n = 27 of 27), treatment (n = 23 of 27), social life (n = 26 of 27), and work (n = 19 of 27). Symptoms/impacts reported using the app were consistent with interview findings, although new symptoms were identified (ear pain, throat pain, nasal scabs, and nasal burning). These results supported the development of a conceptual model outlining concepts related to symptoms, impacts, and treatment of NP. Severe, recurrent, bilateral NP are associated with a range of symptoms that have significant detrimental impact on HRQoL. •During qualitative, semistructured concept elicitation interviews, participants with severe, recurrent, bilateral nasal polyps (n = 27) from the United States and Germany reported 36 symptoms (7 primary: nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]; and 29 secondary, most frequent: mucus/catarrh [n = 20 of 27] and nose bleeds [n = 20 of 27]). All particip
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A targeted literature review of published qualitative studies and online blogs describing patient experiences of NP was conducted. Semistructured concept elicitation interviews were conducted in the United States and Germany with participants ≥18 years with severe, recurrent, bilateral NP to explore their symptom experience and impacts on health-related quality of life (HRQoL; NCT03221192). A subset of 10 participants reported symptoms and impacts using a smartphone or tablet application (app) over a 10-day period. A paucity of qualitative evidence regarding patient experience of NP was identified from the literature or blog review. Twenty-seven participant interviews were conducted. Thirty-six symptoms were identified, including 7 primary symptoms (nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]) and 29 secondary symptoms (the most common were mucus/catarrh and nose bleeds [both n = 20 of 27]). Most symptoms were reported to vary both within and between days. Sixty impacts of severe NP were reported, including impacts on sleep (n = 22 of 27), physical functioning (n = 21 of 27), activities of daily living (n = 21 of 27), emotional well-being (n = 27 of 27), treatment (n = 23 of 27), social life (n = 26 of 27), and work (n = 19 of 27). Symptoms/impacts reported using the app were consistent with interview findings, although new symptoms were identified (ear pain, throat pain, nasal scabs, and nasal burning). These results supported the development of a conceptual model outlining concepts related to symptoms, impacts, and treatment of NP. Severe, recurrent, bilateral NP are associated with a range of symptoms that have significant detrimental impact on HRQoL. •During qualitative, semistructured concept elicitation interviews, participants with severe, recurrent, bilateral nasal polyps (n = 27) from the United States and Germany reported 36 symptoms (7 primary: nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]; and 29 secondary, most frequent: mucus/catarrh [n = 20 of 27] and nose bleeds [n = 20 of 27]). All participants reported relationships between symptoms experienced, and most varied both within and between days.•Impacts on health-related quality of life were also reported: proximal impacts on sleep (22 of 27; 81.5%), physical functioning (21 of 27; 77.7%), and activities of daily living (21 of 27; 77.7%); and distal impacts on emotional well-being (27 of 27; 100.0%), treatments (23 of 27; 85.1%), social life (26 of 27; 96.3%), and work (19 of 27; 70.4%).•Symptoms and impacts reported by participants during the app task were generally consistent with interview findings, although 4 new symptoms were identified that were not reported during the interviews: ear pain, throat pain, nasal scabs, and nasal burning (reported by 1 participant each). Alternative methodologies or technologies are valuable supplemental tools for collection of further insights into patient experiences in addition to patient interviews.</description><identifier>ISSN: 1098-3015</identifier><identifier>EISSN: 1524-4733</identifier><identifier>DOI: 10.1016/j.jval.2019.11.005</identifier><identifier>PMID: 32389229</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>chronic rhinosinusitis ; concept elicitation ; health-related quality of life ; nasal polyps ; patient-reported outcomes</subject><ispartof>Value in health, 2020-05, Vol.23 (5), p.632-641</ispartof><rights>2020 ISPOR–The Professional Society for Health Economics and Outcomes Research</rights><rights>Copyright © 2020 ISPOR–The Professional Society for Health Economics and Outcomes Research. Published by Elsevier Inc. All rights reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c400t-e24d51dac7f8af50d6511fc4e03ce4fea9e48a175b6c207294e6101a771af3b73</citedby><cites>FETCH-LOGICAL-c400t-e24d51dac7f8af50d6511fc4e03ce4fea9e48a175b6c207294e6101a771af3b73</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1016/j.jval.2019.11.005$$EHTML$$P50$$Gelsevier$$Hfree_for_read</linktohtml><link.rule.ids>314,780,784,3550,27924,27925,45995</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32389229$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hall, Rebecca</creatorcontrib><creatorcontrib>Trennery, Claire</creatorcontrib><creatorcontrib>Chan, Robert</creatorcontrib><creatorcontrib>Gater, Adam</creatorcontrib><creatorcontrib>Bradley, Helena</creatorcontrib><creatorcontrib>Sikirica, Mirko V.</creatorcontrib><creatorcontrib>von Maltzahn, Robyn</creatorcontrib><creatorcontrib>Sousa, Ana R.</creatorcontrib><creatorcontrib>Nelsen, Linda M.</creatorcontrib><title>Understanding the Patient Experience of Severe, Recurrent, Bilateral Nasal Polyps: A Qualitative Interview Study in the United States and Germany</title><title>Value in health</title><addtitle>Value Health</addtitle><description>To qualitatively explore patient experiences of severe, recurrent, bilateral nasal polyps (NP). A targeted literature review of published qualitative studies and online blogs describing patient experiences of NP was conducted. Semistructured concept elicitation interviews were conducted in the United States and Germany with participants ≥18 years with severe, recurrent, bilateral NP to explore their symptom experience and impacts on health-related quality of life (HRQoL; NCT03221192). A subset of 10 participants reported symptoms and impacts using a smartphone or tablet application (app) over a 10-day period. A paucity of qualitative evidence regarding patient experience of NP was identified from the literature or blog review. Twenty-seven participant interviews were conducted. Thirty-six symptoms were identified, including 7 primary symptoms (nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]) and 29 secondary symptoms (the most common were mucus/catarrh and nose bleeds [both n = 20 of 27]). Most symptoms were reported to vary both within and between days. Sixty impacts of severe NP were reported, including impacts on sleep (n = 22 of 27), physical functioning (n = 21 of 27), activities of daily living (n = 21 of 27), emotional well-being (n = 27 of 27), treatment (n = 23 of 27), social life (n = 26 of 27), and work (n = 19 of 27). Symptoms/impacts reported using the app were consistent with interview findings, although new symptoms were identified (ear pain, throat pain, nasal scabs, and nasal burning). These results supported the development of a conceptual model outlining concepts related to symptoms, impacts, and treatment of NP. Severe, recurrent, bilateral NP are associated with a range of symptoms that have significant detrimental impact on HRQoL. •During qualitative, semistructured concept elicitation interviews, participants with severe, recurrent, bilateral nasal polyps (n = 27) from the United States and Germany reported 36 symptoms (7 primary: nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]; and 29 secondary, most frequent: mucus/catarrh [n = 20 of 27] and nose bleeds [n = 20 of 27]). All participants reported relationships between symptoms experienced, and most varied both within and between days.•Impacts on health-related quality of life were also reported: proximal impacts on sleep (22 of 27; 81.5%), physical functioning (21 of 27; 77.7%), and activities of daily living (21 of 27; 77.7%); and distal impacts on emotional well-being (27 of 27; 100.0%), treatments (23 of 27; 85.1%), social life (26 of 27; 96.3%), and work (19 of 27; 70.4%).•Symptoms and impacts reported by participants during the app task were generally consistent with interview findings, although 4 new symptoms were identified that were not reported during the interviews: ear pain, throat pain, nasal scabs, and nasal burning (reported by 1 participant each). Alternative methodologies or technologies are valuable supplemental tools for collection of further insights into patient experiences in addition to patient interviews.</description><subject>chronic rhinosinusitis</subject><subject>concept elicitation</subject><subject>health-related quality of life</subject><subject>nasal polyps</subject><subject>patient-reported outcomes</subject><issn>1098-3015</issn><issn>1524-4733</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><recordid>eNp9kc9u1DAQxiMEoqXlBTggHzk0YcZ2kg3iUqpSKlXQf3u2vPYEvMo6W9tZ2MfgjfF2C0cu9mj8m2_k7yuKNwgVAjbvl9Vyo4eKA3YVYgVQPysOseaylK0Qz3MN3awUgPVB8SrGJQA0gtcviwPBxazjvDssfs-9pRCT9tb57yz9IHatkyOf2PmvNYVcGWJjz-5oQ4FO2C2ZKYT8fsI-uUEnCnpgX3XM5_U4bNfxAztlN5MeXMo6G2KXPjMbRz_ZXZrsljn_uGXuXSKbe1kisryeXVBYab89Ll70eoj0-uk-Kuafz-_PvpRX3y4uz06vSiMBUklc2hqtNm0_030NtqkReyMJhCHZk-5IzjS29aIxHFreSWqya7ptUfdi0Yqj4t1edx3Gh4liUisXDQ2D9jROUXEJiMDbbofyPWrCGGOgXq2DW-mwVQhqF4Vaql0UaheFQlQ5ijz09kl_WqzI_hv5630GPu4Byr_MBgUVzaPd1gUySdnR_U__Dw66nDs</recordid><startdate>202005</startdate><enddate>202005</enddate><creator>Hall, Rebecca</creator><creator>Trennery, Claire</creator><creator>Chan, Robert</creator><creator>Gater, Adam</creator><creator>Bradley, Helena</creator><creator>Sikirica, Mirko V.</creator><creator>von Maltzahn, Robyn</creator><creator>Sousa, Ana R.</creator><creator>Nelsen, Linda M.</creator><general>Elsevier Inc</general><scope>6I.</scope><scope>AAFTH</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope></search><sort><creationdate>202005</creationdate><title>Understanding the Patient Experience of Severe, Recurrent, Bilateral Nasal Polyps: A Qualitative Interview Study in the United States and Germany</title><author>Hall, Rebecca ; Trennery, Claire ; Chan, Robert ; Gater, Adam ; Bradley, Helena ; Sikirica, Mirko V. ; von Maltzahn, Robyn ; Sousa, Ana R. ; Nelsen, Linda M.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c400t-e24d51dac7f8af50d6511fc4e03ce4fea9e48a175b6c207294e6101a771af3b73</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>chronic rhinosinusitis</topic><topic>concept elicitation</topic><topic>health-related quality of life</topic><topic>nasal polyps</topic><topic>patient-reported outcomes</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Hall, Rebecca</creatorcontrib><creatorcontrib>Trennery, Claire</creatorcontrib><creatorcontrib>Chan, Robert</creatorcontrib><creatorcontrib>Gater, Adam</creatorcontrib><creatorcontrib>Bradley, Helena</creatorcontrib><creatorcontrib>Sikirica, Mirko V.</creatorcontrib><creatorcontrib>von Maltzahn, Robyn</creatorcontrib><creatorcontrib>Sousa, Ana R.</creatorcontrib><creatorcontrib>Nelsen, Linda M.</creatorcontrib><collection>ScienceDirect Open Access Titles</collection><collection>Elsevier:ScienceDirect:Open Access</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Value in health</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hall, Rebecca</au><au>Trennery, Claire</au><au>Chan, Robert</au><au>Gater, Adam</au><au>Bradley, Helena</au><au>Sikirica, Mirko V.</au><au>von Maltzahn, Robyn</au><au>Sousa, Ana R.</au><au>Nelsen, Linda M.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Understanding the Patient Experience of Severe, Recurrent, Bilateral Nasal Polyps: A Qualitative Interview Study in the United States and Germany</atitle><jtitle>Value in health</jtitle><addtitle>Value Health</addtitle><date>2020-05</date><risdate>2020</risdate><volume>23</volume><issue>5</issue><spage>632</spage><epage>641</epage><pages>632-641</pages><issn>1098-3015</issn><eissn>1524-4733</eissn><abstract>To qualitatively explore patient experiences of severe, recurrent, bilateral nasal polyps (NP). A targeted literature review of published qualitative studies and online blogs describing patient experiences of NP was conducted. Semistructured concept elicitation interviews were conducted in the United States and Germany with participants ≥18 years with severe, recurrent, bilateral NP to explore their symptom experience and impacts on health-related quality of life (HRQoL; NCT03221192). A subset of 10 participants reported symptoms and impacts using a smartphone or tablet application (app) over a 10-day period. A paucity of qualitative evidence regarding patient experience of NP was identified from the literature or blog review. Twenty-seven participant interviews were conducted. Thirty-six symptoms were identified, including 7 primary symptoms (nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]) and 29 secondary symptoms (the most common were mucus/catarrh and nose bleeds [both n = 20 of 27]). Most symptoms were reported to vary both within and between days. Sixty impacts of severe NP were reported, including impacts on sleep (n = 22 of 27), physical functioning (n = 21 of 27), activities of daily living (n = 21 of 27), emotional well-being (n = 27 of 27), treatment (n = 23 of 27), social life (n = 26 of 27), and work (n = 19 of 27). Symptoms/impacts reported using the app were consistent with interview findings, although new symptoms were identified (ear pain, throat pain, nasal scabs, and nasal burning). These results supported the development of a conceptual model outlining concepts related to symptoms, impacts, and treatment of NP. Severe, recurrent, bilateral NP are associated with a range of symptoms that have significant detrimental impact on HRQoL. •During qualitative, semistructured concept elicitation interviews, participants with severe, recurrent, bilateral nasal polyps (n = 27) from the United States and Germany reported 36 symptoms (7 primary: nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]; and 29 secondary, most frequent: mucus/catarrh [n = 20 of 27] and nose bleeds [n = 20 of 27]). All participants reported relationships between symptoms experienced, and most varied both within and between days.•Impacts on health-related quality of life were also reported: proximal impacts on sleep (22 of 27; 81.5%), physical functioning (21 of 27; 77.7%), and activities of daily living (21 of 27; 77.7%); and distal impacts on emotional well-being (27 of 27; 100.0%), treatments (23 of 27; 85.1%), social life (26 of 27; 96.3%), and work (19 of 27; 70.4%).•Symptoms and impacts reported by participants during the app task were generally consistent with interview findings, although 4 new symptoms were identified that were not reported during the interviews: ear pain, throat pain, nasal scabs, and nasal burning (reported by 1 participant each). Alternative methodologies or technologies are valuable supplemental tools for collection of further insights into patient experiences in addition to patient interviews.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>32389229</pmid><doi>10.1016/j.jval.2019.11.005</doi><tpages>10</tpages><oa>free_for_read</oa></addata></record>
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source Elsevier ScienceDirect Journals Complete; EZB Electronic Journals Library
subjects chronic rhinosinusitis
concept elicitation
health-related quality of life
nasal polyps
patient-reported outcomes
title Understanding the Patient Experience of Severe, Recurrent, Bilateral Nasal Polyps: A Qualitative Interview Study in the United States and Germany
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