1. It Takes Guts: Parental Impact of Gastroschisis
23rd International Meeting of the Pediatric Colorectal Club
It Takes Guts: Parental Impact of Gastroschisis
Ford K, Davidson J, Ade-Ajayi N
Department of Paediatric Surgery
Introduction
Aim and Method
Gastroschisis (GS) is a full thickness abdominal wall defect affecting 1:2,000 – 3,000 infants1
The incidence of GS is increasing 2.
Mortality in HIC has reduced but time to full enteral autonomy remains days3.
Gastroschisis related intestinal dysmotility (GRID) occurs in a proportion of children4 with GS which is responsible for 16% of all paediatric patients with intestinal failure5.
Infants with GRID have long hospital stays, with financial, social and emotional consequences.
We aim to report GS parental perspectives; their expectations and the practical, financial and emotional impact of hospitalisation.
Single centre series (January April 2015).
All infants born with GS within study period were included.
Primary carers (PC) completed a questionnaire exploring expectations for the postnatal period and the reality of hospitalisation.
Opinions were also sought regarding future research to reduce time to enteral autonomy (EA).
Data is given as median (range). P<0.05 was considered significant.
Results
35 infants consecutive infants with GS; 11 excluded - not contactable (n=7), child adopted (n=2), emigration (n=1) inpatient at the time of study (n=1).
100% of PCs who were contactable agreed to participate (n=24, 13 female).
Cohort descriptive data:
Gestational age was 36 weeks (33 – 40) and birth weight was 2.58kg (1.7 – 3.7)
5 infants were ‘complex’ (closing n=1, ileal atresia n=2, colonic atresia n=1, jejunal and colonic atresia n=1).
88% of cases were managed with a silo (n=21).
All parents had undergone antenatal counselling. The median rating of the antenatal counselling was 7.5 (1 – 10/10).
The length of stay was 35 days (17 – 269). This was unexpected by 6 PC, 5 of whom had a stay >42 days (p=0.018) (Table 1).
23 PC visited at least once a day and 6 (2-15) other family members visited the infant once a week or more.
10 PC reported significant family stress (Table 1).
48% were provided with on-site accommodation (all living between 1-4 hours travel time from the hospital), commuting distance twice those not offered accommodation (p=0.002). All travel was self funded, with a return journey cost of £15.5 (£5-90)/person.
Plans for future research to reduce time taken to EA were strongly supported; 10 (7-10/10).
Length of stay
Didn’t expect length of stay (n)
Strain on family relationships (n)
Working/in education (n)
Back to work (n)
Partners extend unpaid leave (n)
<42 days (n=14) 1 4 9 3
>42 days (n=9) 5 6 7
P value*
*Fisher’s exact
P=0.018 -
TABLE 1: Length of stay analysis, <42 days vs. >42 days
References
Conclusions
1. Penman DG, Fisher RM Noblett HR et al. Increase in incidence of gastroschisis in the southwest of England in Br J ObstetGynaecol 1998;105:328-31
2. Kilby MD. The incidence of gastroschisis. BMJ 2006;332:250-1
3. Charlesworth P, Akinnola I, Hammerton C et al. Preformed silos versus traditional abdominal wall closure in gastroschisis (GS): 163 infants at a single institution. Eur J Pediatr Surg 2014;24:88–93.
4. Philips JD, Raval MV, Redden C et al, Gastroschisis, atresia, dysmotility: surgical treatment strategies for a distinct clinical entity. J Pediatr Surg 2008;43:
5. Squires RH, Duggan C, Teitelbaum DH et al. Natural history of pediatric intestinal failure: Initial report from the pediatric intestinal failure consortium. J Pediatr 2012;16;
PCs of GS infants face considerable practical, financial and emotional stress during admission
Despite antenatal counselling, an inpatient stay of >42 days was beyond the expectations of PCs
PCs strongly welcome research and interventions to reduce time to EA