Ecological Momentary Assessment to uncover affect dynamics in patients with Hereditary Angioedema: A complementary tool for enhancing quality of life evaluation

Ecological Momentary Assessment to uncover affect dynamics in patients with Hereditary Angioedema: A complementary tool for enhancing quality of life evaluation | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Article Ecological Momentary Assessment to uncover affect dynamics in patients with Hereditary Angioedema: A complementary tool for enhancing quality of life evaluation Luca Ranucci, Alessandra Gorini, Monica Parati, Azzurra Cesoni Marcelli, and 7 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6860644/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Hereditary Angioedema (HAE) is a rare genetic condition associated with poor quality of life (QoL). Affect, defined by Activation (energy) and Valence (pleasantness), is linked to QoL and fluctuates daily, reflecting emotion regulation processes. This study explored affective dynamics in HAE patients, with (HAE A + ) and without attacks (HAE A − ), comparing them to healthy controls (CTR), using Ecological Momentary Assessment (EMA). Secondarily, correlation between affective dynamics and AE-QoL was assessed. In this observational study, 12 HAE patients and 14 CTR completed weekly EMA surveys over 16 weeks, assessing Positive Activation (PA), Negative Activation (NA), and Valence (VA). Affective intensity, variability, and instability were computed. HAE participants also completed the AE-QoL and AECT. HAE patients showed higher mean VA (p = 0.016) and lower NA for worry (p = 0.021) than CTR. HAE A − had higher PA and VA, and lower NA for anger and worry than both HAE A + and CTR. AE-QoL correlated negatively with PA (r=–0.78, p = 0.003) and VA (r=–0.68, p = 0.014). HAE patients, especially those without attacks, displayed more positive emotional profiles than controls. EMA captured emotional patterns not evident in traditional questionnaires, supporting its value as a complementary tool for QoL evaluation in rare chronic diseases. Health sciences/Health care/Quality of life Biological sciences/Psychology Physical sciences/Engineering/Biomedical engineering Hereditary angioedema rare disease ecological momentary assessment affect quality of life burden of disease Full Text Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted 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. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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-6860644","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":534090370,"identity":"21433ed0-f0aa-4731-8fa7-bdec9b4d5b82","order_by":0,"name":"Luca 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Affect, defined by Activation (energy) and Valence (pleasantness), is linked to QoL and fluctuates daily, reflecting emotion regulation processes. This study explored affective dynamics in HAE patients, with (HAE A\u003csup\u003e+\u003c/sup\u003e) and without attacks (HAE A\u003csup\u003e\u0026minus;\u003c/sup\u003e), comparing them to healthy controls (CTR), using Ecological Momentary Assessment (EMA). Secondarily, correlation between affective dynamics and AE-QoL was assessed. In this observational study, 12 HAE patients and 14 CTR completed weekly EMA surveys over 16 weeks, assessing Positive Activation (PA), Negative Activation (NA), and Valence (VA). Affective intensity, variability, and instability were computed. HAE participants also completed the AE-QoL and AECT. HAE patients showed higher mean VA (p\u0026thinsp;=\u0026thinsp;0.016) and lower NA for worry (p\u0026thinsp;=\u0026thinsp;0.021) than CTR. HAE A\u003csup\u003e\u0026minus;\u003c/sup\u003e had higher PA and VA, and lower NA for anger and worry than both HAE A\u003csup\u003e+\u003c/sup\u003e and CTR. AE-QoL correlated negatively with PA (r=\u0026ndash;0.78, p\u0026thinsp;=\u0026thinsp;0.003) and VA (r=\u0026ndash;0.68, p\u0026thinsp;=\u0026thinsp;0.014). HAE patients, especially those without attacks, displayed more positive emotional profiles than controls. EMA captured emotional patterns not evident in traditional questionnaires, supporting its value as a complementary tool for QoL evaluation in rare chronic diseases.\u003c/p\u003e","manuscriptTitle":"Ecological Momentary Assessment to uncover affect dynamics in patients with Hereditary Angioedema: A complementary tool for enhancing quality of life evaluation","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-28 04:38:27","doi":"10.21203/rs.3.rs-6860644/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"e8c936c4-0d4b-4e3e-b708-59d55d4ae118","owner":[],"postedDate":"October 28th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":56790363,"name":"Health sciences/Health care/Quality of life"},{"id":56790364,"name":"Biological sciences/Psychology"},{"id":56790365,"name":"Physical sciences/Engineering/Biomedical engineering"}],"tags":[],"updatedAt":"2026-02-04T11:26:40+00:00","versionOfRecord":[],"versionCreatedAt":"2025-10-28 04:38:27","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6860644","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6860644","identity":"rs-6860644","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}