Medicine & Health (South Western Sydney Clinical School), University of New South Wales, Sydney, NSW, Australia.
Crohn's Colitis Cure, Sydney, NSW, Australia.
Dig Dis Sci. 2023 Dec;68(12):4368-4380. doi: 10.1007/s10620-023-08146-2. Epub 2023 Oct 28.
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.
This study describes and evaluates a consensus method developed to ensure consumer needs were met.
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.
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.
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).
克罗恩病结肠炎护理是一种成人炎症性肠病电子健康系统。克罗恩病结肠炎护理需要增加儿科功能，以实现终身记录并减轻过渡不足。
本研究描述并评估了一种共识方法的开发，以确保满足消费者的需求。
由临床医生共识小组开发了针对儿科的特定功能和相关资源，这些资源被认为是纳入的重要资源。该小组分为专题小组，并进行了两轮投票。内容有效性指数用于确定达成共识的项目。随后，向患有炎症性肠病的儿童及其父母展示了共识小组提出的非临床纳入主题的描述性清单，并要求他们对与主题相关的功能和资源是否应包括在内进行投票。
共识过程共咨询了 189 人（38 名临床医生、32 名炎症性肠病儿童和 119 名家长）。所有组都同意纳入与生活质量、心理健康、自我管理和过渡准备相关的功能和资源；然而，在一般炎症性肠病事实、您的炎症性肠病病史和满意度方面存在分歧。成本方面的分歧最大，与临床医生相比，消费者的支持度较低。超过 75%的消费者同意，为了完成调查而延长预约时间是可以的，超过 90%的消费者认为克罗恩病结肠炎护理应该允许消费者向他们的治疗团队提问。
广泛的消费者共同设计和咨询对于揭示不同观点非常重要，以确保克罗恩病结肠炎护理的建立能够支持消费者和临床医生的观点。消费者合作创建一份要包含在软件中的功能和资源清单（左），影响最终产品的构建（右）。
