DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS
Authors: Heisler Courtney , Rohatinsky Noelle , Stewart Michael , Vallis Michael , Shepherd Tiffany , Wozney Lori , Cassidy Christine , Currie Barbara , Phalen-Kelly Kelly , Robar Jessica , Targownik Laura , Huard Thea , Neil Emily , Jones Jennifer 
Published: January 2022

Abstract

BACKGROUND
The growing prevalence of Inflammatory Bowel Disease (IBD) along with increasing complexity of providing high-quality, patient-centered care within a resource-constrained healthcare environment presents a major challenge. IBD-related psychological distress (IBD-PD) is the emotional impact of IBD and is associated with mental health disorders, increased disease severity, and premature mortality. With estimates of nearly 90% of IBD patients experiencing PD, the inability to provide high-quality, person-centered care for IBD- PD that is proportionate to clinical need is a significant care gap in the Canadian healthcare system.

AIMS
To generate stakeholder-derived data to inform the design and development of stepped-intensity, cognitive behavioral therapy-based interventions for IBD-PD using evidence-based, patient–centered interventions and implementation strategies.

METHODS
Virtual semi-structured interviews were conducted from September to October 2021. The interview guide was developed iteratively by researchers, IBD care providers, and patient research partners and guided by the COM-B Model of Behaviour and the Theoretical Domains Framework. Interview questions assessed perceptions, experiences, barriers, and facilitators to accessing IBD-PD care. Adults diagnosed with IBD were recruited from academic centers across Canada. Interviews were co-facilitated by a researcher and patient research partner, audio recorded, and transcribed. Using thematic analysis, codes were generated to identify themes using an inductive approach.

RESULTS
As of October 2021, eleven interviews have been completed, with data collection ongoing. The mean participant age was 33.5 years (range 21-55 years) with 63.6% of respondents identified as female (7/11). The majority of participants worked full time (8/11, 72.7%) and all had completed at least high school. Diagnoses of Crohn’s Disease (7/11, 63.6%) were more common than ulcerative colitis (4/11, 36.4%) among the participants. Thematic analyses identified five major themes: 1) Lack of holistic care and acknowledgement of IBD-PD; 2) System-level and financial barriers to psychological support; 3) Lack of psychological support from providers with an understanding of IBD; 4) Preference for individualized virtual-based support; 5) Heavy reliance on informal support structures (caregivers) due to lack of access to formal psychological support.

CONCLUSIONS
As part of human-centered design, stakeholder engagement is key to understanding behavioral, social, attitudinal, and environmental barriers and facilitators for accessing IBD-PD care. Interviews are ongoing and specific intervention functions will be defined and incorporated into patient-centered implementation strategies.