2017 - CIRTA

10- Intestinal Transplantation

52.17 - Quality of life (QoL) in children after small bowel transplantation (SBTx) using a validated generic scoring system, the Euroqol EQ-5DY

Presenter: Sarah , Pugh, Birmingham, United Kingdom
Authors: Lindsay Hogg, Sarah Pugh, Girish Gupte, Jane Hartley, Rob Jobe, Jacqueline Blyth, Jemma Mears, Thamera Perera, Paola Muiesan, Darius Mirza, Khalid Sharif, Sue Beath

Quality of life (QoL) in children after small bowel transplantation (SBTx) using a validated generic scoring system, the Euroqol EQ-5DY

Lindsay Hogg1, Sarah Pugh1, Girish Gupte1, Jane Hartley1, Rob Jobe1, Jacqueline Blyth1, Jemma Mears1, Thamera Perera2, Paola Muiesan2, Darius Mirza2, Khalid Sharif1, Sue Beath1.

1The Liver Unit, Birmingham Children's Hospital, Birmingham , United Kingdom; 2The Hepatobiliary and Transplant Unit, The Queen Elizabeth Hospital, Birmingham , United Kingdom

Quality of life (QoL) is a subjective entity which can be difficult to assess in children who estimate QoL differently from adults e.g. children will usually value acceptance by peers above independence. The aim of this pilot study was to evaluate the acceptability of a generic test of QoL and compare the results with those of European population norms. The Euroqol EQ-5DY was used – it is a fully validated questionnaire suitable for children older than 8 yrs (http://www.euroqol.org).

Subjects & Methods: Forty children & teenagers as of 1st Dec 2016 are in follow up after SBTx in our programme, of whom 15/25 eligible patients were assessed during their annual review. All 15 children rated themselves by marking a visual analogue scale (VAS) 0-100 (100 being the best health they could imagine), & choosing one of three responses to questions about mobility; self care; activities; pain; worries. 15 patients were excluded (age <8yr =  6; age  > 25 yr = 1; unwell with rejection or gastroenteritis = 5; recent SBTx= 3).

Results: Male 11; female 4. Median age =16.3 yrs(range 8.3 -21.0yr); median time since SBTx = 10 yrs (range 5-17); median age at transplant = 1.6yrs (range 0.5-11.75).  All had experienced intestinal failure since birth (aetiology: short bowel = 9; dysmotility = 6). Type of grafts were: combined liver & bowel = 10; isolated SBTx =2; sequential liver then SBTx =2; modified multivisceral SBTx =1.

VAS: mean = 84.2; median = 90 (range 5-100) 25th centile = 76;  and 75th centile =100
Domain results see table 1. The EQ-5DY was completed within 5 minutes & most children (12/15) rated themselves as having a quality of life as good as their peer group (VAS score greater than 80).  However, in two of the domains: some children reported major concerns for pain and worries. In the domain for worries, there was a trend (p=0.09) for older children, in the process of transition to adult services, to score lower than children  <14 yrs of age.  One young adult who was addicted to opiates reported very low quality of life with a VAS score of 5/100.  There was no association between the presence of a stoma, or type of graft and QoL scores.  

Conclusion: The EQ-5DY is simple to use and was helpful as a screening test at annual structured assessments for identifying individual children with lower scores and facilitating targeted additional physiotherapy with orthopaedic review (in two cases where hip pain was reported) and psychological support.

We gratefully acknowledge the expertise of the nursing staff of ward 8 Birmingham Children’s Hospital and the collaborations with paediatric gastroenterologists who have referred their patients and undertaken shared care with us. .

[1] Reference: Burstro?m K, Bartonek A?, Brostro?m EW, Sun S, Egmar AC (2014). EQ-5D-Y as a health-related quality of life measure in children and adolescents with functional disability in Sweden: testing feasibility and validity. Acta Paediatr; 103(4):426-35.

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