title: Clinical, social, and economic impacts of home parenteral nutrition dependence in short bowel syndrome.
abstract: Home parenteral nutrition (HPN) provides nourishment and hydration to patients with short bowel syndrome and intestinal failure and is thus a life-sustaining therapy for these patients. However, measures of quality of life (QOL) are lower among the HPN-dependent population than among patients with other intestinal diseases who do not require HPN. Multiple factors contribute to lower QOL in HPN-dependent patients, including fears surrounding the increased risk of HPN-associated adverse events, such as catheter-related complications, parenteral nutrition-associated liver disease, and metabolic bone disease. In addition, HPN-dependent patients report impaired sleep and daytime fatigue because of pump noises, equipment alarms, and nocturia. Psychosocial burdens on families of HPN-dependent 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-of-pocket expenses for insurance premiums and nonreimbursed copayments, medications, and supplies. Furthermore, HPN technology and HPN-related 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-being. 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-dependent patients and caregivers include patient education, affiliation with support groups, treatment of concomitant symptoms, and pharmacotherapies that decrease HPN requirements.
authors.affiliation: Department of Surgery/Nutrition Support, Rhode Island Hospital, Alpert Medical School of Brown University, Providence, Rhode Island.
authors.forename: Marion F
authors.initials: MF
authors.lastname: Winkler
authors.forename: Carol E
authors.initials: CE
authors.lastname: Smith
mesh_terms: D001847:Bone Diseases / Q000209:etiology / Q000473:pathology; D055499:Catheter-Related Infections / Q000191:economics / Q000209:etiology / Q000473:pathology; D006801:Humans; D008019:Life Style; D008107:Liver Diseases / Q000209:etiology / Q000473:pathology; D016331:Parenteral Nutrition, Home / Q000009:adverse effects / Q000191:economics / Q000379:methods*; D011788:Quality of Life; D012778:Short Bowel Syndrome / Q000150:complications / Q000191:economics / Q000628:therapy*
keywords: adults; gastroenterology; home parenteral nutrition; quality of life; short bowel syndrome