Social circumstances and medical complications in children with intestinal failure

• Published in: Archives of disease in childhood Vol. 99; no. 4; pp. 336 - 341
• Main Authors: Zamvar, Veena, Puntis, John W L, Gupte, Girish, Lazonby, Gill, Holden, Christine, Sexton, Elaine, Bunford, Christopher, Protheroe, Susan, Beath, Susan V
• Format: Journal Article
• Language: English
• Published: London BMJ Publishing Group 01.04.2014; BMJ Publishing Group Ltd; BMJ Publishing Group LTD
• Subjects: Adolescent; Analysis; Biological and medical sciences; Blood; Catheter-Related Infections - etiology; Catheters; Child; Child Abuse; Child Safety; Child, Preschool; Children & youth; Community involvement; Compliance; Complications and side effects; Drug administration; England; Families & family life; Family Involvement; Female; General aspects; Graft Rejection - etiology; Health problems; Hospitals; Humans; Infant; Infections; Influence; Intestine, Small - transplantation; Learning Problems; Malabsorption Syndromes - psychology; Malabsorption Syndromes - therapy; Male; Medical instruments; Medical sciences; Mental disorders; Miscellaneous; Nutrition; Observational studies; Parenteral feeding; Parenteral nutrition; Parenteral Nutrition, Home - adverse effects; Parenteral Nutrition, Home - psychology; Parenteral Nutrition, Home - standards; Parenteral therapy; Parents; Parents & parenting; Patient Compliance; Patients; Prevention and actions; Public health. Hygiene; Public health. Hygiene-occupational medicine; Retrospective Studies; Risk Factors; Single-Parent Family; Social Conditions; Social Support; Transplantation; Transplantation of organs, tissues, etc; Transplants & implants; Vulnerable Populations - psychology; England; Human; Medicine; Pediatrics; intestinal failure; Digestive diseases; Intestinal disease; Complication; Child; Social aspect; Public health; Comm Child Health; Multidisciplinary team-care; compliance; Gastroenterology; transplantation
• ISSN: 0003-9888; 1468-2044
• DOI: 10.1136/archdischild-2013-304482

Although most children discharged on home parenteral nutrition (HPN) will achieve enteral autonomy, some remain parenteral nutrition dependent; those who develop life-threatening complications may undergo small bowel transplantation (SBTx). The aim of this study was to investigate the relationship between social circumstances, compliance and complications. Subjects and methods An observational study in 2008–2012 on 64 children (34 HPN, 30 SBTx) from three units (two regional gastroenterology; one transplant). Social circumstances were assessed routinely as part of discharge planning; adherence by families to home care management was scored, and episodes of catheter-related blood stream infection and graft rejection were recorded for 2 years and related to compliance and social circumstances. Results A quarter of families had a disadvantaged parent: non-English speaking (n=11), unable to read (n=5), physical disability (n=3), mental health problems disclosed (n=10); 20% children were cared for by a lone parent. Discharge home was delayed by social factors (n=9) and need for rehousing (n=17, 27%). 17/34 (50%) of HPN and 12/30 (40%) of transplant families were assessed as fully adherent. 10 families were assessed as non-adherent, eight were subject to child protection review and care was taken over by another family member (n=3) or foster parents (n=2). The risk of catheter-related blood stream infection was increased by parental disadvantage and age <3 years (p<0.05). Poor compliance was associated with complications in HPN and SBTx recipients. Conclusions Children receiving complex home care may be socially isolated and measures to support improved compliance such as increased community support, social care involvement and respite care may improve outcomes.