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IDDF2021-ABS-0063 Using a consensus-based method to develop a novel paediatric-specific inflammatory bowel disease ehealth clinical management system
  1. Joseph Louis Pipicella1,
  2. Angharad Vernon-Roberts2,
  3. Alissa Walsh1,
  4. Andre Wierzbicki1,
  5. Andrew Day2,
  6. David William Carter3,
  7. Edward Giles4,
  8. Richard Gearry2,
  9. Susan Jane Connor5,
  10. Jane Mary Andrews6,
  11. Shoma Dutt7
  1. 1Crohn’s Colitis Cure, Sydney, NSW, Australia
  2. 2Department of Paediatrics, University of Otago Christchurch, Christchurch, New Zealand
  3. 3Stratos Technology Partners, Christchurch, New Zealand
  4. 4Department of Paediatrics, Monash University, Clayton, VIC, Australia
  5. 5Department of Gastroenterology and Hepatology, Liverpool Hospital, Sydney, NSW, Australia
  6. 6Central Adelaide Local Health Network, Adelaide, SA, Australia
  7. 7The Children’s Hospital at Westmead Clinical School, University of Sydney, Sydney, Australia


Background ‘CCCare’ is an inflammatory bowel disease (IBD)-specific electronic medical record (eMR) developed to support care for adults with IBD. ‘CCCare-P’ is the paediatric ‘version’ of CCCare. CCCare-P may provide coordination of care between paediatric and adult centres during transition. A consensus method, described here, was developed prior to CCCare-P build to ensure necessary inclusions were incorporated. We aim to examine this method’s effectiveness.

Methods A consensus group (CG) comprising adult and paediatric health care professionals was formed. The CG created a list of potential functionalities (e.g. ability to score disease activity) and supporting resources (e.g. Pediatric Ulcerative Colitis Activity Index [PUCAI]). The CG met and reviewed this list, identifying common themes. The CG was divided into three working groups (WG) based on identified themes (WG1=Diagnosis and management; WG2=Paediatric chronic disease; WG3= ‘Non-clinical’ items). Two voting rounds (VR1 & VR2) used the same Likert scale (0=Omit, 4=Essential) to determine opinions on proposed functionalities and resources. VR1 occurred after an initial item review meeting. WGs then independently reviewed functionalities and supporting resources, and later presented their findings to the CG in an online, two-day meeting. After circulating meeting minutes, attendees completed VR2. The content validity index method (CVI) was used to judge which functionalities and resources reached consensus (CVI 0.78).

Results All five WG1 functionalities reached consensus in both voting rounds. The consensus process led to additional resources being included in VR2, with the number deemed necessary for inclusion in VR2 being 38 (68% consensus) compared to 23 in VR1 (65% consensus). All five WG2 functionalities and 11/15 resources reached consensus in VR2. For WG3, 4/8 functionalities and 3/28 resources reached consensus in VR1; with 4/6 functionalities and 6/17 of resources reaching consensus in VR2.

Conclusions A consensus process was used to determine consensus for functionalities and resources needed to support CCCare-P. Most standard inclusions (e.g. disease activity indices) were non-contentious and thus minimally influenced by the consensus process. Conversely, complex items (e.g. mental health assessments) were markedly more influenced.

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