Impact of home parenteral nutrition on family members: A national multi-centre cross-sectional study. Issue 2 (February 2022)

• Record Type: Journal Article
• Authors: French, Chloe; Lal, Simon; Jones, Debra; Sowerbutts, Anne Marie; Brundrett, Diane; Burch, Nicola; Calvert, Chris; Cooper, Sheldon C.; Donnellan, Clare; Forbes, Alastair; Gabe, Simon; Lam, Ching; Major, Giles; Mountford, Christopher G.; Muggridge, Rebecca; Natarajan, Brenavan; Neild, Penny; Rogers, Dan; Sharkey, Lisa; Thompson, Beth; Wheatley, Carolyn; Burden, Sorrel
• Is Part Of: Clinical nutrition. Volume 41:Issue 2(2022)
• Page Start: 500
• Page End: 507
• Publication Date: 2022-02
• Subjects: Parenteral nutrition (PN) -- Intestinal failure -- Family member; HPN Home parenteral nutrition -- IF intestinal failure -- SBS short bowel syndrome -- BSFC burden scale for family caregivers -- PNIQ parenteral nutrition impact questionnaire -- PN parenteral nutrition -- U.K. United Kingdom -- PINNT Patients on Intravenous and Nasogastric Nutrition -- EQ-5D-5L EuroQol- 5 Dimension -- EQ-VAS EuroQuol-visual analogue scale -- QoL quality of life -- SD standard deviation -- 95% CI 95% confidence interval -- aOR adjusted odds ratio; Critically ill -- Nutrition -- Periodicals; Diet therapy -- Periodicals; Parenteral feeding -- Periodicals; Enteral feeding -- Periodicals; Enteral Nutrition -- Periodicals; Parenteral Nutrition -- Periodicals; Metabolism -- Periodicals; Diétothérapie -- Périodiques; Alimentation parentérale -- Périodiques; Alimentation entérale -- Périodiques; Nutrition -- Périodiques; Diet therapy; Enteral feeding; Nutrition; Parenteral feeding; Electronic journals; Periodicals; Electronic journals; 615.854
• DOI: 10.1016/j.clnu.2021.12.030
• Languages: English
• ISSNs: 0261-5614

Abstract

Summary: Background & aims: Home parenteral nutrition (HPN) is a necessary treatment for patients with chronic, type 3, intestinal failure (IF). HPN often requires lifestyle adaptations, which are likely to affect quality of life (QoL) in both patients and family members. The aim of this study was to identify the level of burden on family members who are involved with HPN care and to understand specific factors that contribute to any burden. Methods: Patients over the age of 18 and receiving HPN were identified in IF clinics from multiple centres across the U.K. Eligible patients were asked to complete the parenteral nutrition impact questionnaire (PNIQ) to assess their QoL, while family members were asked to complete the burden scale for family caregivers (BSFC). Logistical regression was undertaken giving adjusted odds ratios (aOR). Results: 678 participants completed the survey representing 339 patients with their appointed family member. Mean PNIQ score was 11.53 (S.D. 5.5), representing a moderate impact of HPN on patients' QoL. On the BSFC scale, 23% of family members reported a moderate to very severe subjective burden indicating an increased risk of psychosomatic symptoms. After adjusting for age and gender, predictors of BSFC included: family members self-reported health status using the EuroQol visual analogue scale (aOR 19.91, 95% CI 1.69, 233.99, p = 0.017) and support received by health services (aOR = 5.83, 95% CI = 1.93, 17.56, p = 0.002). Employment status, disease type, number of nights on HPN and length of time on HPN were not associated with BSFC. Conclusions: Family members with a poor health status or lack of support by health service were more likely to have a moderate to very severe subjective burden. Tailored support from the multi-professional IF team may reduce the burden experienced by family members of people dependent on HPN.