How good is quality-of-life for children receiving home parenteral nutrition? - A pilot study.

BACKGROUND & AIMS: Children on home parenteral nutrition and their parents not only engage with complex nutritional issues but also have to manage difficult social and financial problems with social and clinical support that may not always meet their needs. Baxter's HPN-QOL questionnaire, assesses the QOL of adult patients treated with HPN, and has been developed rigorously using standard guidelines, measuring various dimensions of QOL. Our aim was to use this tool to explore how HPN influences the QOL of paediatric patients. METHODS: The HPN-QOL questionnaire was modified to suit a paediatric HPN population. Data on demographics, aetiology of intestinal failure and duration of HPN were collected from a departmental database. Quality-of-Life grading of functional and symptom scales, HPN specific items and overall QOL Numerical Rating Scales were determined. RESULTS: Fourteen out of 17 families returned the completed questionnaires. QOL was significantly impaired by increased dependency regarding items of daily living such as eating, dressing, washing, and mobility, but was not affected in the domains of school attendance, general fatigue, pain and body image. There were no significant differences in QOL when patients with and without enterostomy were compared. Patients felt well supported by the hospital nutrition team in managing logistics related to HPN. CONCLUSIONS: QOL in HPN patients was not significantly affected by the medical aspects of care. This descriptive study highlights the need for further integration of medical and social care in order to support families of children receiving HPN as QOL was impaired in relation to activities of daily living and social functioning.

Social circumstances and medical complications in children with intestinal failure.

UNLABELLED: 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.

Recurrent life-threatening sepsis in intestinal failure: transplantation or foster care?

Parenteral nutrition has transformed the outlook for patients with intestinal failure, but is associated with serious long-term complications, including catheter-related blood stream infection, liver disease and loss of venous access. Risks can be significantly reduced by strict adherence to management regimens, such as catheter-care protocols, but intestinal transplantation is indicated when complications threaten survival. The responsibility of home parenteral nutrition as an alternative to long-term hospitalisation is welcomed by many parents, but represents a huge burden of care that sometimes proves beyond their capacity. We report two children with recurrent life-threatening central venous catheter infections who were removed from the intestinal transplant list following virtual cessation of infective episodes after going into foster care. These cases raise important issues about the level of family support offered, the role of non-compliance with treatment routines in relation to risk of complications, and how this should be assessed and monitored.

Nasojejunal tube placement in paediatric intensive care.

Nasojejunal delivery of enteral feeds is a safe and effective alternative to parenteral nutrition in critically ill children in whom intra-gastric feeding is usually poorly tolerated. A guideline for bedside placement of nasojejunal tubes (NJTs) was developed by a mulit-disciplinary group. An audit of practice was carried out following implementation of the guideline. During the audit period 27 NJTs were successfully passed in 21 patients. The result of this innovation has been early initiation of nasojejunal feeding and an increase in bedside placement of NJTs within the PICU. Paediatric radiologists have reported a reduction in requests for NJT placement under X-ray screening and there has been a reduction in the use of medication and X-ray to place NJTs. Based on the audit data, 58 per cent of the children would have definitely or probably commenced parenteral nutrition had NJT placement and feeding been unsuccessful. The audit also demonstrated that 26 out of 27 nurses and doctors reported they found the guidelines easy or very easy to follow. Reducing variations in practice through the use of guidelines increases the frequency of jejunal feeding. This benefits critically ill patients by improving tolerance of enteral feeding for better nutritional outcomes.