Addressing Medical Trauma in Young Adults With Inflammatory Bowel Disease: A Roadmap for Patient-Centered Resources and Collaborative Care

Background:
Young adults with inflammatory bowel disease (IBD) face unique challenges, including unpleasant medical interventions, invasive procedures, and daily disease management, all of which can contribute to the experience of medical trauma. Experiences of medical trauma can lead to heightened anxiety, depression, and diminished confidence in navigating young adulthood, compounding the already significant burden of IBD. Understanding the impact of medical trauma on this population is essential for improving patient-centered care and developing strategies to mitigate its effects.
Methods:
We conducted a comprehensive literature review across multiple databases, including MEDLINE, PubMed, EMBASE, and PsycINFO, focusing on systematic reviews and empirical studies on medical trauma and IBD. We searched for pre-existing resources and relevant systematic reviews on medical trauma in young adults with IBD to help identify necessary components for the development of a patient toolkit designed to support the management and prevention of medical trauma. This informed our outline of domains and what should be included in such a resource. The domains underwent refinement based on the input of gastroenterologists and psychologists. Domains included definitions and types of medical trauma, psychological and emotional impact, coping strategies, self-advocacy, strategies for communicating with providers and the care team, and self-care and support from loved ones.
Results:
Limited literature exists regarding the prevalence and impact of medical trauma in young adults with IBD. To ensure patients have the appropriate tools and education, we provide a roadmap for patients and advocates to develop a resource for young adults with IBD who have experienced medical trauma to utilize in care settings. While the creation of a patient-centered resource is critical for the mitigation of the effects of medical trauma, we emphasize the importance of a cross-sector and systemic approach to preventing medical trauma. We highlight the need for collaboration amongst patients, advocates, providers, care staff, and health system leaders to identify supportive interventions and care delivery modifications that may better serve patients who have experienced medical trauma. While there is a growing body of research on medical trauma in chronic illness populations, we identify the need for more targeted studies focusing on young adults with IBD. We highlight necessary future areas of research specific to this population, including the long-term psychological outcomes of medical trauma, effective interventions specifically designed for young adults with IBD, and the role of new and emerging treatment modalities in potentially reducing or exacerbating medical trauma.
Conclusions:
There is a critical gap in tools and resources designed specifically for young adult patients with IBD to mitigate the medical trauma that they may experience. More collaboration is needed across research and care delivery sectors, including individuals with lived experience, to identify supportive interventions and care delivery modifications to better serve patients who have experienced medical trauma. Healthcare professionals should encourage conversations that enable patients to talk about medical trauma and how it may impact the way they receive or approach care. Patients must be given appropriate tools to convey their experiences about medical trauma to improve lifelong outcomes.