Co-design and Consultation Ensure Consumer Needs Are Met: Building an eHealth Platform for Children with Inflammatory Bowel Disease

Joseph Louis Pipicella; Angharad Vernon-Roberts; Shoma Dutt; Edward Giles; Andrew S Day; Susan Jane Connor; Jane Mary Andrews

doi:10.1007/s10620-023-08146-2

Co-design and Consultation Ensure Consumer Needs Are Met: Building an eHealth Platform for Children with Inflammatory Bowel Disease

Dig Dis Sci. 2023 Dec;68(12):4368-4380. doi: 10.1007/s10620-023-08146-2. Epub 2023 Oct 28.

Authors

Joseph Louis Pipicella^{1

2

3}, Angharad Vernon-Roberts⁴, Shoma Dutt^{5

6}, Edward Giles⁷, Andrew S Day⁴, Susan Jane Connor^{8

9

10

11}, Jane Mary Andrews^{9

12

13}

Affiliations

¹ Medicine & Health (South Western Sydney Clinical School), University of New South Wales, Sydney, NSW, Australia. j.pipicella@unsw.edu.au.
² Crohn's Colitis Cure, Sydney, NSW, Australia. j.pipicella@unsw.edu.au.
³ Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group, Ingham Institute for Applied Medical Research, 1 Campbell St, Liverpool, NSW, 2170, Australia. j.pipicella@unsw.edu.au.
⁴ Department of Paediatrics, University of Otago Christchurch, Christchurch, New Zealand.
⁵ Department of Gastroenterology, The Children's Hospital at Westmead, Sydney Children's Hospitals Network, Westmead, NSW, Australia.
⁶ The University of Sydney Children's Hospital Westmead Clinical School, Sydney, NSW, Australia.
⁷ Department of Paediatrics, Monash University, Clayton, VIC, Australia.
⁸ Medicine & Health (South Western Sydney Clinical School), University of New South Wales, Sydney, NSW, Australia.
⁹ Crohn's Colitis Cure, Sydney, NSW, Australia.
¹⁰ Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group, Ingham Institute for Applied Medical Research, 1 Campbell St, Liverpool, NSW, 2170, Australia.
¹¹ Department of Gastroenterology and Hepatology, Liverpool Hospital, Sydney, NSW, Australia.
¹² Central Adelaide Local Health Network, Adelaide, SA, Australia.
¹³ Faculty of Health Sciences, University of Adelaide, Adelaide, SA, Australia.

Abstract

Background: Crohn's Colitis Care is an adult inflammatory bowel disease eHealth system. Crohn's Colitis Care required additional pediatric functionality to enable life-long records and mitigate transition inadequacies.

Aim: This study describes and evaluates a consensus method developed to ensure consumer needs were met.

Methods: Pediatric-specific functionality and associated resources considered important for inclusion were developed by a clinician consensus group. This group was divided into thematic subgroups and underwent two voting rounds. The content validity index was used to determine items reaching consensus. Children with inflammatory bowel disease and their parents were later shown a descriptive list of non-clinical inclusion topics proposed by the consensus group, and asked to vote on whether topic-related functionality and resources should be included.

Results: The consensus process consulted 189 people in total (38 clinicians, 32 children with inflammatory bowel disease and 119 parents). There was agreement across all groups to incorporate functionality and resources pertaining to quality of life, mental health, self-management, and transition readiness; however, divergence was seen for general inflammatory bowel disease facts, your inflammatory bowel disease history, and satisfaction. Cost saw the greatest disparity, being less supported by consumers compared to clinicians. Over 75% of consumers agreed it would be okay for appointments to take longer for survey completion, and > 90% thought Crohn's Colitis Care should allow consumers to ask their treating team questions.

Conclusions: Widespread consumer co-design and consultation were important in unveiling differing perspectives to ensure Crohn's Colitis Care was built to support both consumer and clinician perspectives. Consumers collaborate to create a list of functionality and resources to be included in software (left), influencing the final product build (right).

Keywords: Consensus; Inflammatory bowel diseases; Outpatients; Pediatrics; Telemedicine.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Child
Colitis*
Colitis, Ulcerative* / psychology
Crohn Disease* / psychology
Crohn Disease* / therapy
Humans
Inflammatory Bowel Diseases* / therapy
Quality of Life
Referral and Consultation