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Shared decision making with breast cancer patients – does it work?
274 Impact of diabetes on the lives of young adults
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  1. Anka Van Gastel1,2,
  2. Matthijs Graner3,
  3. Anne Stiggelbout1,4,
  4. Victor M Montori5,6,
  5. Viet-Thi Tran7,8,9,
  6. Sean Dinneen10,11,
  7. Jessica Mesman12,
  8. Joris Swaak13,
  9. Henk-Jan Aanstoot14,
  10. Eelco De Koning2,
  11. Marleen Kunneman1,5
  1. 1Biomedical Data Sciences, Leiden University Medical Center, Leiden, the Netherlands
  2. 2Internal Medicine, Leiden University Medical Center, Leiden, The Netherlands
  3. 3The ééndiabetes foundation, Amsterdam, the Netherlands
  4. 4Erasmus School of Health Policy and Management, Erasmus University Rotterdam, the Netherlands
  5. 5Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester MN, USA
  6. 6Division of Endocrinology, Diabetes and Metabolism, Mayo Clinic College of Medicine, Rochester MN, USA
  7. 7General Medicine, Paris Diderot University, Paris, France
  8. 8METHODS Team, Centre for Research in Epidemiology and Statistics (CRESS), Université Paris Cité, INSERM, Paris, France
  9. 9Centre d’Épidémiologie Clinique, HôpitalHôtel-Dieu, Paris, France
  10. 10Galway University Hospitals, Galway, Ireland
  11. 11Department of Medicine, NUI Galway, Galway, Ireland
  12. 12Department of Society Studies, Maastricht University, Maastricht, the Netherlands
  13. 13Panton Medical Design Agency, Deventer, the Netherlands
  14. 14Diabeter: Center for Pediatric and Adult Diabetes Care and Research, Rotterdam, the Netherlands

Abstract

Introduction Young adults with type one diabetes (w/T1D) have relatively poor biomedical and psychosocial outcomes, which may be related to age-specific challenges and efforts to implement care into their ever-changing lives. To better understand the impact of trying to align diabetes care and life for young adults, this study aimed to assess the impact of diabetes care on young adults’ lives.

Methods We surveyed young adults (18–30 years of age) w/T1D. Participants were recruited through multiple Dutch diabetes (patient) organizations and hospitals. The primary outcome of the survey was experienced burden of treatment using the Treatment Burden Questionnaire (TBQ). Secondary outcomes were health-related quality of life (using the Type 1 Diabetes and Life questionnaire, T1DAL), clinical diabetes outcomes, and questions about treatment regimen and major life events that may affect alignment of care and life.

Results We have currently included 133 of the planned 500 participants. Data collection will be completed in January 2024. Preliminary results suggest that 3 out of 4 young adults report a high treatment burden (TBQ), that is, they report that their investment of time, energy, and efforts in healthcare is unsustainable over time. Final results will be available early 2024.

Discussion/Conclusion Young adults w/T1D report a treatment burden that is about twice as high as for other people living with chronic conditions, indicating a high impact of diabetes care on their lives. Our study is a first step in understanding the adjustments young adults may make to care or life, to be better able to implement the care that is needed and wanted, while minimally disrupting their lives and social networks.

https://doi.org/10.1136/bmjebm-2024-SDC.273

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