NETS¹ᴴᴰ - Hirschsprung’s Disease

Results

The NETS¹ᴴᴰ study has now concluded, and the items to form the core outcome set have been identified. Once the results have been published, a summary will be posted here along with a downloadable version of the study report.

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Summary

Through conduct of a three-phase Delphi process, a core outcome set will be developed by a multi-disciplinary panel with either lived experience of Hirschsprung’s Disease, or expertise in management of Hirschsprung’s Disease. A final consensus meeting will be held with key stakeholders to ratify the core outcome set, and implement its use across Hirschsprung’s Disease research.

Background

Instead of reporting on outcomes such as long term continence or constipation which affect patient quality of life and school performance[1], the majority of studies comparing surgical interventions for interventions for Hirschsprung’s Disease focus on surrogate markers such as bowel function prior to the age at which continence could be expected, or hospital metrics, such as operative time[2]. Developing a core outcome set for Hirschsprung’s Disease will reduce the reporting bias and lack of patient relevance that can occur when researchers selectively choose and report on outcome measures in this manner[3].

By developing a core outcome set for Hirschsprung’s Disease, the ability of surgeons to counsel parents, obtain informed consent, and develop evidence-based management guidelines will be improved. 

Study Period

Phase 1 – January 2016

Phase 2 - March 2016

Phase 3 - May 2016

Consensus Meeting - June 2016

Key objectives

  1. Determine which outcomes are currently reported in studies comparing surgical treatments for Hirschsprung’s Disease and assess the quality of reporting.
  2. Prioritise outcomes from patient/parent, paediatric surgical, and non-surgical clinician perspectives.
  3. Achieve consensus between key stakeholders on a core outcome set for assessing how successful the overall treatment of an infant with Hirschsprung’s Disease has been.
  4. Compare and contrast outcomes prioritised by patients/parents, surgeons and non-surgical clinicians.

Wider aims

  1. Develop methodology for countering difficulties likely to be seen in development of core outcome sets in all paediatric surgical conditions, including:
    1. Recruitment of parents and patients
    2. Incorporation of opinions from clinicians whose priorities vary dependent on their specialty, or age they encounter the child.

Participants

Target recruitment is at least fifty participants, spanning a wide-range of expertise, including paediatric surgeons, neonatologists, paediatricians, GPs, nurses, parents and patients.

View the full study protocol

Funding

National Institute for Health Research

Investigators

References

  1. ^ Moore SW, Albertyn R, Cywes S. Clinical outcome and long-term quality of life after surgical correction of Hirschsprung's disease. Journal of pediatric surgery. 1996;31(11):1496-502.
  2. ^ Thomson D, Allin B, Long A, Bradnock T, Walker G, Knight M. Laparoscopic assistance for primary transanal pull-through in Hirschsprung’s disease: a systematic review and meta-analysis. Unpublished Systematic Review2014.
  3. ^ Williamson P, Altman D, Blazeby J, Clarke M, Gargon E. Driving up the quality and relevance of research through the use of agreed core outcomes. Journal of Health Services Research & Policy. 2012;17(1):1-2.