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Mutations in the <jats:italic>SI<\/jats:italic> gene result in abnormal synthesis and\/or incorrect transport of the SI enzyme. Patients with CSID generally have reduced sucrase activity, but levels of isomaltase activity range from absent to almost normal. This study sought to better understand the experience of patients with CSID prior to, during, and after their diagnosis and its subsequent treatment with sacrosidase.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>This was a cross-sectional interview study conducted in conjunction with a longitudinal, observational study of US patients prescribed and taking sacrosidase for at least three consecutive months as treatment for CSID. The observational study included both children and adults.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>This qualitative interview study explored the experiences of 43 adult and pediatric patients (<jats:italic>n<\/jats:italic>\u2009=\u20098 adults and <jats:italic>n<\/jats:italic>\u2009=\u200935 children\/adolescents) with CSID pre-, during, and post-diagnosis. Findings suggest that a CSID diagnosis is particularly problematic given the disparate range of more commonly understood gastrointestinal (GI) disorders. After diagnosis and treatment with sacrosidase, participants reported considerable improvement in symptoms and health-related quality of life (HRQL), yet symptoms persist that continue to affect daily life, indicating areas of potential unmet need.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>Educating clinicians about CSID may help improve the overall diagnosis experience. As this research is the first of its kind in CSID, additional research, qualitative and quantitative, will be important to furthering the understanding of HRQL impact and unmet need experienced by this population and identifying ways to best meet those needs.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s11136-021-02819-z","type":"journal-article","created":{"date-parts":[[2021,3,27]],"date-time":"2021-03-27T15:02:35Z","timestamp":1616857355000},"page":"2329-2338","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["The patient journey to diagnosis and treatment of congenital sucrase-isomaltase deficiency"],"prefix":"10.1007","volume":"30","author":[{"given":"Heather","family":"Smith","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3318-119X","authenticated-orcid":false,"given":"Beverly","family":"Romero","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emuella","family":"Flood","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne","family":"Boney","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2021,3,27]]},"reference":[{"issue":"2","key":"2819_CR1","doi-asserted-by":"publisher","first-page":"281","DOI":"10.1172\/jci9677","volume":"106","author":"R Jacob","year":"2000","unstructured":"Jacob, R., Zimmer, K. 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At the time of the study, Emuella Flood was an employee of ICON, plc., which was contracted by QOL Medical to conduct the qualitative interview study. Beverly Romero is a current employee of ICON, plc.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by Salus IRB (Austin, TX), a central independent review board (salusirb.com).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Informed consent was obtained from all participants, and\/or their legal guardians, included in the study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"Not applicable.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}]}}