New research has identified 10 core outcomes that key stakeholders consider most important in determining whether treatment of children with Hirschsprung’s disease (HD) has been successful. This research, titled the NETS¹ᴴᴰ study, has been published in the Archives of Disease in Childhood, and was conducted by NPEU researchers Ben Allin, Marian Knight and Jenny Kurinczuk and consultant paediatric surgeons Gregor Walker, Tim Bradnock and Simon Kenny. The study team worked with around 150 stakeholders including people with HD, parents of children with HD and healthcare professionals managing children with HD. Together they developed a HD core outcome set (COS) of 10 outcomes, which includes measures for mortality, quality of life, bowel function and unplanned reoperation.
HD is a rare disorder present at birth in which the nerves within the bowel are not properly developed. Whilst there are many ways to treat HD, no gold standard management strategy has been identified. Use of this HD COS can reduce the variability of reported outcomes of HD, making it easier to identify gold standard treatments for children with HD. You can read the published research in full here. Further research on the impact of different surgical interventions on the HD COS will begin in September 2017.