iBDecide: A web-based tool to promote engagement in shared decision-making among adolescents with ulcerative colitis |
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| Institution: | 1. Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA;2. Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA;3. College of Design, Architecture, Art, and Planning, University of Cincinnati, Cincinnati, OH, USA;1. Division of Pharmacy, School of Allied Health, The University of Western Australia, Perth, Australia;2. Pharmacy Department, Perth Children’s Hospital, Perth, Australia;3. Department of Anaesthesia and Pain Management, Perth Children’s Hospital, Perth, Australia;4. Perioperative Medicine, Telethon Kids Institute, Perth Australia;5. Division of Emergency Medicine, Anaesthesia and Pain Medicine, The University of Western Australia, Perth, Australia;6. Pharmacy Department, Sir Charles Gairdner Hospital, Nedlands, Australia;1. Department of Family Medicine and Siaal Research Center for Family Practice and Primary Care, Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer Sheba, Israel and Clalit Health Services, Southern District, Beer-Sheba, Israel;2. Department of Counseling and Human Development, University of Haifa, Haifa, Israel;1. Center for Adaptive Rationality, Max Planck Institute for Human Development, Berlin, Germany;2. Institute for Medical Sociology & Rehabilitation Science, Charité – University Hospital Berlin, Berlin, Germany;3. Drug Commission of the German Medical Association, Berlin, Germany;4. Center for Anesthesiology and Intensive Care Medicine, Charité – Universitätsmedizin Berlin, Germany;1. Division of General Internal Medicine, Zuckerberg San Francisco General Hospital, University of California San Francisco, San Francisco, CA, USA;2. Center for Vulnerable Populations, University of California San Francisco, San Francisco, CA, USA;3. Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CA, USA;1. College of Medicine, University of Arkansas for Medical Sciences Northwest, Fayetteville, AR, USA;2. Department of Sociology, University of Nebraska-Lincoln, Lincoln, NE, USA;3. Department of Sociology and Anthropology, Southern Oregon University, Ashland, OR, USA;1. University of Oslo, Institute of Clinical Medicine, Oslo, Norway;2. Akershus University Hospital, HØKH Health Services Research Unit, 1478 Lørenskog, Norway;3. University of South-Eastern Norway, Department of Educational Science and Department of Medicine, Nordland Hospital Trust, Bodø, Norway |
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| Abstract: | BackgroundAdolescents and young adults (AYAs) seek increased autonomy and self-efficacy. AYAs must learn to manage their medical care in preparation for transition to adult healthcare. Our team’s research found that AYAs need more information about their disease and treatmentObjectiveTo develop and test the usability of a decision tool “iBDecide” to promote shared decision-making among AYAs with ulcerative colitis (UC) who are beginning to manage their treatment and medicationsMethodsUsing design thinking, 14 AYAs, 6 healthcare providers, 4 designers, a social worker, and a human factors researcher developed a shared decision-making tool. The System Usability Scale (SUS) assessed usabilityResultsAYAs preferred an application with information on treatment, medication, nutrition, and symptom tracking. A web-based application, ‘iBDecide’, was developed to include these options. SUS results indicated that participants on average “agree” that: ‘they would use iBDecide’ and that ‘it was easy to use and streamlined’. The mean SUS score was 78.25 (+/?12.91), range 70–90DiscussionIncluding AYAs in tool development helps ensure usability and improves engagement in shared decision-making. Co-designed tools may remove barriers for engagement and skill-building needed for the transition to adult care.ConclusioniBDecide can stimulate AYA engagement in shared decision-making in treating UC. |
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| Keywords: | Shared decision-making Adolescents Ulcerative colitis Design thinking |
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