{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T08:54:15Z","timestamp":1784105655559,"version":"3.55.0"},"reference-count":25,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,8,7]],"date-time":"2025-08-07T00:00:00Z","timestamp":1754524800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,8,7]],"date-time":"2025-08-07T00:00:00Z","timestamp":1754524800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100007723","name":"Takeda Pharmaceuticals U.S.A.","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007723","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["aspenjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Nut in Clin Prac"],"published-print":{"date-parts":[[2025,10]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Patients with short bowel syndrome\u2013associated intestinal failure (SBS\u2010IF) require complex, personalized, and multidisciplinary care; however, there are disparities in access. This study measured the impact of unmet needs and treatment burden among patients and their caregivers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This cross\u2010sectional, mixed\u2010method study included US adults self\u2010reporting SBS\u2010IF and receiving home parenteral nutrition for \u22656 months and their caregivers. One\u2010hour interviews informed the development of a 30\u2010min survey administered to participants from an online health community.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Among 68 patients, the mean age was 42 years, 79% were female, and 88% were White. Most of the 16 caregivers were female (69%), and younger than 45 years (69%). Of 32 patients (47%) receiving care from an SBS specialist, only 19 (59%) were referred after diagnosis; in 58% of these, referral occurred &gt;6 months after diagnosis. Depression was reported in 44 patients (65%), with 54% not receiving professional mental health care. Financial concerns were common, with 44 patients (65%) unable to work and 40 patients (59%) reporting annual household income of &lt;$50,000. Of 32 patients reporting difficulty paying medical bills, 22 (32%) could not fill prescriptions and 19 (28%) canceled\/delayed healthcare provider visits. Social determinant of health challenges were reported by 44 patients (65%). Caregivers' responsibilities impacted their ability to work (50%) and future outlook (63%).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Patients with SBS\u2010IF face difficulties accessing specialized healthcare, and are at risk of adverse healthcare outcomes, financial hardships, and poor quality of life. Mental health and work\/financial issues were common among both patients and caregivers.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ncp.70002","type":"journal-article","created":{"date-parts":[[2025,8,7]],"date-time":"2025-08-07T10:25:35Z","timestamp":1754562335000},"page":"1115-1124","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Short bowel syndrome\u2013associated intestinal failure patient experience: A mixed\u2010method study leveraging an online patient community"],"prefix":"10.1002","volume":"40","author":[{"given":"Brian Po\u2010Han","family":"Chen","sequence":"first","affiliation":[{"name":"Inspire Arlington Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-1751-4459","authenticated-orcid":false,"given":"Josh","family":"Feldman","sequence":"additional","affiliation":[{"name":"Inspire Arlington Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Megan","family":"Gower","sequence":"additional","affiliation":[{"name":"Takeda Pharmaceuticals U.S.A., Inc. Lexington Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Kirby","sequence":"additional","affiliation":[{"name":"Takeda Pharmaceuticals U.S.A., Inc. Lexington Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian","family":"Terreri","sequence":"additional","affiliation":[{"name":"Takeda Pharmaceuticals U.S.A., Inc. Lexington Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maggie","family":"McCue","sequence":"additional","affiliation":[{"name":"Takeda Pharmaceuticals U.S.A., Inc. Lexington Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7902-3544","authenticated-orcid":false,"given":"Manpreet S.","family":"Mundi","sequence":"additional","affiliation":[{"name":"Division of Endocrinology, Diabetes, Metabolism, and Nutrition Mayo Clinic Rochester Minnesota USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,8,7]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bpg.2016.02.011"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0016-5085(19)38643-3"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/gut.2010.218271"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607113512678"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/jhn.12803"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607110362582"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2022.12.003"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607113518946"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1185\/03007995.2013.784700"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/1476-5918-6-7"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/jpen.2388"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607113517717"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2020.06.010"},{"issue":"1","key":"e_1_2_10_15_1","first-page":"S17","article-title":"Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome","volume":"38","author":"Winkler M","year":"2023","journal-title":"Nutr Clin Pract"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2021.12.030"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/jpen.2248"},{"issue":"6","key":"e_1_2_10_18_1","first-page":"393","article-title":"Complex home care: part III\u2010\u2010economic impact on family caregiver quality of life and patients' clinical outcomes","volume":"28","author":"Smith CE","year":"2010","journal-title":"Nurs econ"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2012.12.001"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/ncp.11110"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/jpen.2426"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/ncp.11008"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2023.113819"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.2147\/PPA.S443026"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2018.06.981"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnesp.2020.03.023"}],"container-title":["Nutrition in Clinical Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/aspenjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ncp.70002","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/aspenjournals.onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ncp.70002","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/aspenjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ncp.70002","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,8]],"date-time":"2026-03-08T17:26:14Z","timestamp":1772990774000},"score":1,"resource":{"primary":{"URL":"https:\/\/aspenjournals.onlinelibrary.wiley.com\/doi\/10.1002\/ncp.70002"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,8,7]]},"references-count":25,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2025,10]]}},"alternative-id":["10.1002\/ncp.70002"],"URL":"https:\/\/doi.org\/10.1002\/ncp.70002","archive":["Portico"],"relation":{},"ISSN":["0884-5336","1941-2452"],"issn-type":[{"value":"0884-5336","type":"print"},{"value":"1941-2452","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,8,7]]},"assertion":[{"value":"2024-10-09","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-06-22","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-08-07","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}