ECEESPE2025 Poster Presentations Diabetes and Insulin (143 abstracts)
Giving the child with diabetes a clear voice: what matters the most to children with type 1 diabetes attending a pediatric diabetes clinic? A substudy in the ProKidsDia project
Mette Madsen 1,2,3 , Annika Olsson 3,4 , Claudia Jensen 3,4 , Setareh Aslani 3,4 , Patricia DeCosta 5 , Line Hasselbalch 1 , Lotte Vedel 1 , Rosa Kristensen 3,4 , Caroline Mejlsted-Mørch 1,2 , Søren Hagstrøm 1,2,3 , Jannet Svensson 5,6,7 , Sheldon Greenfield 8 , Sherrie Kaplan 8 , Dan Grabowski 5 , Helle Haslund-Thomsen 2,3,9 & Niels Ejskjaer 1,2,10
1Aalborg University Hospital, Steno Diabetes Center North Denmark, Gistrup, Denmark; 2Aalborg University, Department of Clinical Medicine, Gistrup, Denmark; 3Aalborg University Hospital, Department of Pediatrics and Adolescent Medicine, Aalborg, Denmark; 4Aalborg University, The Faculty of Medicine, Gistrup, Denmark; 5Copenhagen University Hospital, Steno Diabetes Center Copenhagen, Copenhagen, Denmark; 6University of Copenhagen, Faculty of Health and Medical Sciences, Department of Clinical Medicine, Copenhagen, Denmark; 7Herlev and Gentofte Hospital, Department of Pediatrics, Herlev, Denmark; 8University of California, Irvine, California, Irvine, United States; 9Aalborg University Hospital, Clinical Nursing Research Unit, Aalborg, Denmark; 10Aalborg University Hospital, Department of Endocrinology, Aalborg, Denmark
JOINT1152
Background: Previously, Patient-Reported Experience Measures (PREMs) for children with type 1 diabetes (CwD) were developed in cooperation with parents and clinicians alone. This resulted in a lack of knowledge concerning children’s experiences in meeting the health care system. It is a challenging task to obtain this information from children, who do not read and write. There exists no animated PREMs for CwD and their parents, teachers and health care professionals (HCP). Our overall aim is to develop an animated, diabetes specific Patient Reported Outcome Measures (PROMs) and PREMs instrument for CwD aged 4-12 years old. This work builds on the animated Child Health Rating Inventories (CHRIS) PROMs questionnaire.
Aims: The specific aims of this study were 1) To obtain the perspectives of CwD, parents, teachers and HCP on needs and experiences, when attending an outpatient pediatric diabetes clinic in Denmark and 2) To establish a minimal set of PREM domains as the first step in developing an animated PREMs questionnaire.
Materials and Methods: COSMIN guidelines for developing Patient reported Outcome measures (PROMs) were used. Three participatory design workshops were executed in two regions in Denmark in the period August 2023 – April 2024. Relevant stakeholders partook in the workshops: 16 CwD, 36 Parents, 7 Teachers and 19 HCP and 27 facilitators. Play-based communication and storytelling tools were used to enable and engage CwD to participate in the workshop. All participants (but HCP) were systematically encouraged to describe what is of personal value in daily life with diabetes and also describe bio-psycho-social challenges and needs in the PREMs context. All workshops were video- and audio recorded, transcribed, and thematically analyzed.
Results: Four main PREM domains were identified. 1) Diabetes-specific expertise, where trust in the HCP’s expertise played an important role. 2) The hospital environment, in which the consultation rooms were perceived as clinical and not child-friendly, resulting in children being more passive during the consultation. 3) The diabetes team’s family-centered approach with emphasis on establishing and maintaining a relationship while considering the child’s interests and developmental stage. 4) The family’s preparation and planning prior to outpatient visits, which was described as important to create a more positive experience for the child.
Conclusion: This study describes four important PREM domains for a CwD, parents and HCPs attending an outpatient pediatric clinic. The next study is to develop animated PREM items specific to these four PREM domains in order to develop a PREM questionnaire.
Volume 110
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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