Adolescent and caregiver perceptions of addressing mental health in inflammatory bowel disease.

Adolescents with inflammatory bowel disease (IBD) are at an increased risk of anxiety and depression compared to peers, but availability of mental health services in IBD clinics does not meet patients' needs, and use of primary care services for mental health screening and care is low. This study provides qualitative data regarding adolescent and caregiver perspectives on addressing mental health in IBD. Interviews were conducted with adolescents with IBD and caregivers of adolescents with IBD. Interview transcripts were coded and analyzed for prominent themes. Thirteen adolescents and fourteen caregivers were interviewed. Three primary themes emerged: mental health stigma makes discussing it more difficult, physician-adolescent trust makes conversations about mental health easier, and asking about mental health directly can help adolescents feel comfortable. Adolescents and caregivers highlighted the importance of considering each patient and their family individually when choosing how to discuss mental health. Fostering trust with adolescents with IBD is vital to addressing mental health. While encouraging standardized screening is important, the most patient-centered approach to mental health involves considering families individually to identify and address mental health challenges. Given the increased risk of anxiety and depression in pediatric patients with IBD, all providers encountering these patients should be equipped to discuss mental health non-judgmentally.

Physicians' Explanatory Models of Pediatric Inflammatory Bowel Disease: A Qualitative Interview Study.

Explanatory models are culturally informed representations of illness that convey understandings of the etiology and expected course of disease. Substantial research has explored lay explanatory models, but examining physicians' clinical explanatory models can also provide insight into patients' understandings of illness because physicians are a foundational source of authoritative knowledge that shapes lay concepts of illness and disease. This study characterized the explanatory models used by pediatric gastroenterologists when explaining inflammatory bowel disease (IBD) to children. We conducted semi-structured qualitative interviews with 20 pediatric gastroenterologists across the United States about their clinical communication and explanatory models. We identified two primary explanatory models used to describe immune dysregulation in pediatric IBD: the defense and protection model, which characterizes the immune system as an army that erroneously sees the body as "non-self" and attacks it; and the switch model, which conceptualizes treatment as activating a switch that turns off a faulty immune response. We also identified two models used by some physicians to describe inflammation: the scratch and scrape model, which compares IBD inflammation to scratches or scrapes on the skin; and the bonfire model, which compares inflammation to a fire in need of extinguishing. While the use of militaristic metaphors is pervasive in medicine, describing autoimmunity as a battle against the self may lead children to perceive their body as the enemy. This may be compounded by describing the immune system as "confused" while noting its ongoing protective function. Use of these explanatory models may nevertheless improve patient disease-related knowledge.

Principles for Assessing Quality of Life in Patients With Crohn's Disease.

ABSTRACT: Crohn's disease (CD) is a lifelong inflammatory bowel disease that can severely impact quality of life. Many questionnaires exist to assess quality of life for patients with CD, but some of these questionnaires were developed without qualitative data from patients or include only limited symptoms. Patient-Reported Impact of Symptoms in CD provides an innovative and patient-centered framework for assessing quality of life in patients with CD, soliciting qualitative data from patient interviews, and using this to guide a cross-sectional study. Their findings should inform how clinicians guide conversations with their patients regarding quality of life.

Sustainable generation of patient-led resources in a learning health system.

BACKGROUND: Patient and Family Advisory Councils (PFACs) are an emerging mechanism to integrate patient and family voices into healthcare. One such PFAC is the Patient Advisory Council (PAC) of the ImproveCareNow (ICN) network, a learning health system dedicated to advancing the care of individuals with pediatric inflammatory bowel disease (IBD). Using quality improvement techniques and co-production, the PAC has made great strides in developing novel patient-led resources. METHODS: This paper, written by patients and providers from ICN, reviews current ICN data on PAC-generated resources, including creation processes and download statistics. RESULTS: Looking at different iterations of PAC infrastructure, this paper highlights specific leadership approaches used to increase patient involvement and improve resource creation. Emerging data suggests that the larger ICN learning health system has had limited interactions with these resources. CONCLUSION: ICN provides a novel approach for meaningful integration of patient partners into learning health systems. This paper points to the incredible value of PFAC expertise in the resource creation process. Future work should seek to support PFAC development across other diseases and address the challenges of integrating patient-led resources into clinical care.