Journal article
NETS1HD: Development of a Hirschsprung’s Disease Core Outcome Set
- Abstract:
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Objective The objective of this study was to develop a Hirschsprung's disease (HD) core outcome set (COS).
Methods: Candidate outcomes were identified from a systematic review and stakeholder nomination. A three-phase Delphi process and consensus meeting were used to prioritise candidate outcomes based on scores assigned by stakeholder participants using a nine-point scale. In phases two and three, participants were shown graphical representations of their panel's scores and all panels’ scores respectively for each outcome from the previous phase. After the third phase, outcomes prioritised by two or three panels were taken forward to the consensus meeting. The COS was formed from the 10 highest scoring outcomes meeting the threshold for inclusion (≥70% 7–9 and <15% 1–3).
Results: Eighty-nine stakeholders (82%) completed all three phases of the Delphi process. Seventy-four outcomes were assessed in phase one of the Delphi process, the following 10 of which met criteria for inclusion in the COS: (1) death with cause specified, (2) long-term faecal incontinence, (3) long-term voluntary bowel movements without need for enemas, or rectal or colonic irrigation, (4) long-term psychological stress for the individual with Hirschsprung's disease, (5) long-term urinary incontinence, (6) objective score of quality of life, (7) objective score of bowel function, (8) unplanned reoperation, (9) >need for a permanent stoma, (10) enterocolitis.
Conclusions: This HD COS is formed of 10 outcomes deemed important by key stakeholders. Use of this COS in research will reduce outcome reporting heterogeneity and increase our ability to identify gold standard treatments for HD.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
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(Preview, Version of record, pdf, 722.0KB, Terms of use)
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- Publisher copy:
- 10.1136/archdischild-2017-312901
Authors
- Funding agency for:
- Allin, B
- Knight, M
- Publisher:
- BMJ Publishing Group
- Journal:
- Archives of Disease in Childhood More from this journal
- Volume:
- 102
- Issue:
- 12
- Pages:
- 1-10
- Publication date:
- 2017-08-07
- Acceptance date:
- 2017-06-01
- DOI:
- EISSN:
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1468-2044
- ISSN:
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0003-9888
- Pubs id:
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pubs:698480
- UUID:
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uuid:b9f1ec43-1948-4d3f-a669-5de629fd337b
- Local pid:
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pubs:698480
- Source identifiers:
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698480
- Deposit date:
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2017-06-05
- ARK identifier:
Terms of use
- Copyright holder:
- © Allin, et al 2017 All rights reserved No commercial use is permitted unless otherwise expressly granted
- Copyright date:
- 2017
- Notes:
- This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
- Licence:
- CC Attribution (CC BY)
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