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Social circumstances and medical complications in children with intestinal failure
Veena Zamvar1, John W L Puntis, Girish Gupte
1Department of Paediatric Gastroenterology, Leeds Children's Hospital, The General Infirmary at Leeds, , Leeds, UK.
Insights
Social disadvantages and poor compliance in children on home parenteral nutrition (HPN) and after small bowel transplantation (SBTx) are linked to complications. Improving support services can enhance outcomes for these vulnerable pediatric patients.
Area of Science:
- Pediatric Gastroenterology
- Transplantation Surgery
- Social Determinants of Health
Background:
- Home parenteral nutrition (HPN) is a critical intervention for children with intestinal failure.
- While most children achieve enteral autonomy, some require long-term HPN or small bowel transplantation (SBTx) due to life-threatening complications.
- Social circumstances and family compliance significantly impact the management of pediatric patients requiring complex home care.
Purpose of the Study:
- To investigate the relationship between social circumstances, adherence to treatment, and complications in children on HPN and those who have undergone SBTx.
- To identify factors influencing the success of home-based complex care for pediatric patients.
Main Methods:
- An observational study conducted between 2008-2012 included 64 children (34 HPN, 30 SBTx) from three specialized units.
- Social circumstances were assessed during discharge planning, and family adherence to home care was scored.
- Catheter-related bloodstream infections and graft rejection episodes were recorded and analyzed in relation to compliance and social factors over a 2-year period.
Main Results:
- A quarter of families faced disadvantages (e.g., language barriers, parental disability, mental health issues), and 20% of children were cared for by a single parent.
- Social factors and housing needs delayed discharge for 27% of families.
- Poor compliance was associated with increased risk of catheter-related bloodstream infections and graft rejection, particularly in younger children (<3 years) and those from disadvantaged backgrounds.
Conclusions:
- Children requiring complex home care, including HPN and SBTx, often experience social isolation.
- Addressing social disadvantages and enhancing compliance through community support, social care involvement, and respite care are crucial for improving outcomes.
- Multifaceted support systems are essential for successful pediatric home-based complex care management.
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.
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