{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T03:37:59Z","timestamp":1792726679554,"version":"4.5.0"},"reference-count":67,"publisher":"Wiley","issue":"1S","license":[{"start":{"date-parts":[[2014,1,13]],"date-time":"2014-01-13T00:00:00Z","timestamp":1389571200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2014,1,13]],"date-time":"2014-01-13T00:00:00Z","timestamp":1389571200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Parenter Enteral Nutr"],"published-print":{"date-parts":[[2014,5]]},"abstract":"<jats:p>Home parenteral nutrition (HPN) provides nourishment and hydration to patients with short bowel syndrome and intestinal failure and is thus a life\u2010sustaining therapy for these patients. However, measures of quality of life (QOL) are lower among the HPN\u2010dependent population than among patients with other intestinal diseases who do not require HPN. Multiple factors contribute to lower QOL in HPN\u2010dependent patients, including fears surrounding the increased risk of HPN\u2010associated adverse events, such as catheter\u2010related complications, parenteral nutrition\u2212associated liver disease, and metabolic bone disease. In addition, HPN\u2010dependent patients report impaired sleep and daytime fatigue because of pump noises, equipment alarms, and nocturia. Psychosocial burdens on families of HPN\u2010dependent patients include decreased social activities, disrupted family relationships and friendships, and depression. These families also face imposing financial constraints, including decreased employment and large out\u2010of\u2010pocket expenses for insurance premiums and nonreimbursed copayments, medications, and supplies. Furthermore, HPN technology and HPN\u2010related complications and sequelae contribute to the rapid overall increase in the costs of healthcare systems. Additionally, family caregivers provide unpaid healthcare services for patients who require HPN, often to the detriment of their own physical and mental well\u2010being. Nonetheless, patients dependent on HPN and their caregivers often demonstrate considerable resilience and are frequently able to normalize their response to illness and disability. Interventions that may improve QOL among HPN\u2010dependent patients and caregivers include patient education, affiliation with support groups, treatment of concomitant symptoms, and pharmacotherapies that decrease HPN requirements.<\/jats:p>","DOI":"10.1177\/0148607113517717","type":"journal-article","created":{"date-parts":[[2014,1,13]],"date-time":"2014-01-13T21:33:13Z","timestamp":1389648793000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":91,"title":["Clinical, Social, and Economic Impacts of Home Parenteral Nutrition Dependence in Short Bowel Syndrome"],"prefix":"10.1002","volume":"38","author":[{"given":"Marion F.","family":"Winkler","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carol E.","family":"Smith","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2014,1,13]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cgh.2005.10.002"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1177\/0884533610379608"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607186010004416"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/apt.12209"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2012.05.004"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607112469818"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2006.10.002"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607110362582"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607105029003162"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2006.05.003"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607109348612"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.eclnm.2007.10.001"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1177\/0115426506021006544"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jada.2010.08.002"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2012.12.001"},{"key":"e_1_2_12_17_1","article-title":"Screening for psychosocial distress in patients with long\u2010term home parenteral nutrition","author":"Roskott AM","journal-title":"Clin Nutr"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2011.09.009"},{"key":"e_1_2_12_19_1","first-page":"84","article-title":"Catheter\u2010related bloodstream infections","volume":"39","author":"Abad CL","year":"2012","journal-title":"General Surgery News"},{"key":"e_1_2_12_20_1","doi-asserted-by":"crossref","DOI":"10.1016\/0002-9343(91)90351-W","article-title":"Infectious complications among patients receiving home intravenous therapy with peripheral, central, or peripherally placed central venous catheters","volume":"91","author":"Graham DR","year":"1991","journal-title":"Am J Med"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.4065\/81.9.1159"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2012.08.004"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nut.2012.03.010"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10096-012-1643-5"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1005628121546"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1177\/014860710102500101"},{"key":"e_1_2_12_27_1","first-page":"377","article-title":"Nurse's guide to understanding and treating thrombotic occlusion of central venous access devices","volume":"13","author":"McKnight S","year":"2004","journal-title":"Medsurg Nurs"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1097\/MCO.0b013e328329e4ef"},{"key":"e_1_2_12_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.humpath.2011.07.008"},{"key":"e_1_2_12_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1499-3872(12)60229-X"},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0899-9007(00)00583-9"},{"key":"e_1_2_12_32_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-132-7-200004040-00003"},{"key":"e_1_2_12_33_1","doi-asserted-by":"publisher","DOI":"10.5863\/1551-6776-16.1.31"},{"key":"e_1_2_12_34_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607110382023"},{"key":"e_1_2_12_35_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607112450301"},{"key":"e_1_2_12_36_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nut.2012.07.009"},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.1177\/0115426507022003329"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.1054\/clnu.2002.0548"},{"key":"e_1_2_12_39_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607104028005289"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.1359\/jbmr.2003.18.11.1989"},{"key":"e_1_2_12_41_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jsbmb.2005.06.020"},{"key":"e_1_2_12_42_1","doi-asserted-by":"publisher","DOI":"10.2307\/3423315"},{"key":"e_1_2_12_43_1","first-page":"283","volume-title":"Clinical Nutrition for Surgical Patients","author":"Compher C","year":"2008"},{"key":"e_1_2_12_44_1","doi-asserted-by":"publisher","DOI":"10.1177\/0115426504019003297"},{"key":"e_1_2_12_45_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607102026003164"},{"key":"e_1_2_12_46_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2004.12.009"},{"key":"e_1_2_12_47_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12529-010-9116-7"},{"key":"e_1_2_12_48_1","doi-asserted-by":"publisher","DOI":"10.1097\/00006199-200311000-00008"},{"key":"e_1_2_12_49_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607193017006501"},{"key":"e_1_2_12_50_1","first-page":"135","article-title":"Quality of life and changes in health insurance in long\u2010term home care","volume":"22","author":"Gaskamp CD","year":"2004","journal-title":"Nurs Econ"},{"key":"e_1_2_12_51_1","first-page":"393","article-title":"Complex home care, part III: economic impact on family caregiver quality of life and patients\u2019 clinical outcomes","volume":"28","author":"Smith CE","year":"2010","journal-title":"Nurs Econ"},{"key":"e_1_2_12_52_1","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(92)90231-E"},{"key":"e_1_2_12_53_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607105029006408"},{"key":"e_1_2_12_54_1","first-page":"255","article-title":"Complex home care, part I: utilization and costs to families for health care services each year","volume":"28","author":"Piamjariyakul U","year":"2010","journal-title":"Nurs Econ"},{"key":"e_1_2_12_55_1","first-page":"18","article-title":"Medicare enteral and parenteral reimbursement: requirements for successful coverage and payment","volume":"28","author":"Wojtylak FR","year":"2006","journal-title":"Support Line"},{"key":"e_1_2_12_56_1","doi-asserted-by":"publisher","DOI":"10.1177\/0115426506021006539"},{"key":"e_1_2_12_57_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.gastro.2005.09.065"},{"key":"e_1_2_12_58_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11894-009-0048-9"},{"key":"e_1_2_12_59_1","doi-asserted-by":"publisher","DOI":"10.4088\/JCP.v64n1211"},{"key":"e_1_2_12_60_1","unstructured":"HouserAN GibsonMJ.Valuing the invaluable: the economic value of family caregiving 2008 update. Available at:http:\/\/assets.aarp.org\/rgcenter\/il\/i13_caregiving.pdf. Accessed April 3 2013."},{"key":"e_1_2_12_61_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2168.1996.02308.x"},{"key":"e_1_2_12_62_1","doi-asserted-by":"publisher","DOI":"10.1136\/gut.2010.218271"},{"key":"e_1_2_12_63_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.gastro.2012.09.007"},{"key":"e_1_2_12_64_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cgh.2012.12.029"},{"key":"e_1_2_12_65_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2013.03.016"},{"key":"e_1_2_12_66_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1547-5069.2001.00021.x"},{"key":"e_1_2_12_67_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607102026003159"},{"key":"e_1_2_12_68_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607103027002137"}],"container-title":["Journal of Parenteral and Enteral Nutrition"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0148607113517717","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/0148607113517717","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/aspenjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1177\/0148607113517717","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,19]],"date-time":"2025-10-19T12:55:15Z","timestamp":1760878515000},"score":1,"resource":{"primary":{"URL":"https:\/\/aspenjournals.onlinelibrary.wiley.com\/doi\/10.1177\/0148607113517717"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2014,1,13]]},"references-count":67,"journal-issue":{"issue":"1S","published-print":{"date-parts":[[2014,5]]}},"alternative-id":["10.1177\/0148607113517717"],"URL":"https:\/\/doi.org\/10.1177\/0148607113517717","archive":["Portico"],"relation":{},"ISSN":["0148-6071","1941-2444"],"issn-type":[{"value":"0148-6071","type":"print"},{"value":"1941-2444","type":"electronic"}],"subject":[],"published":{"date-parts":[[2014,1,13]]}}}