Empowering Patients to Participate in Clinical Visits: A Patient-Guided Checklist for Young Adults Living With Inflammatory Bowel Disease

Background:
One of the biggest challenges of diagnosing and managing inflammatory bowel diseases (IBD) is its heterogeneous presentation. Given the variability in gastrointestinal symptoms, extra-intestinal manifestations (EIM), systemic issues, and factors impacting quality of life, it is difficult to capture a holistic understanding of an individual’s disease that accurately informs care recommendations. Young adult patients can find it especially challenging to identify which information is pertinent to their healthcare provider (HCP). Available IBD tools tend to lack a holistic framework and collect information that is either too broad or too narrow in scope to guide effective patient-provider conversation. To address these issues, our team of young adult IBD patients/researchers developed a comprehensive checklist that includes real-world considerations affecting young adults with IBD. Our proposed checklist can empower patients during clinical visits by helping them identify what kind of information is pertinent for their HCP, enabling the collaborative development of an IBD care plan.
Methods:
To develop our patient-guided checklist, we began with informal discussions between young adult patients in the Crohn’s and Colitis Young Adult Network. Using our lived experiences to create the basis of this checklist, we combined elements from existing IBD tools identified through previous experiences, word-of-mouth, and web and app searches. Finally, for each checklist item, we performed literature searches on PubMed and Google Scholar to ensure that there was sufficient evidence to support the inclusion of that item. We cross-referenced our checklist items to existing resources from accredited organizations, and our checklist was reviewed by 2 HCPs specializing in IBD care.
Results:
Our comprehensive checklist includes 7 main categories, each with several sub-items, that patients and HCPs can regularly track to enable long-term management of IBD: (1) Gastrointestinal symptoms classically associated with IBD: abdominal pain/cramping, bloating, nausea, rectal bleeding, stool characteristics, and ostomy status. Of note, fecal urgency and ostomy management are important quality of life concerns particularly for young adults in structured settings (school, work, etc.). (2) EIMs such as eye, skin, and joint issues, and perianal disease (3) Systemic issues secondary to IBD, such as anemia, liver inflammation, and bone density loss (4) Medication scheduling and tracking to understand medication adherence and side effects (5) Lifestyle and health maintenance factors such as self-care, psycho-social supports, sexual/reproductive health, nutrition, sleep hygiene, and routine examinations (6) Access to institutional systems and supports including health advocates, accessibility services, and financial counseling (7) Connection to social systems, such as connection to friends, or participation in IBD groups /peer support programs.
Conclusions:
A comprehensive checklist of clinically significant symptoms and lifestyle factors can encourage shared clinical decision-making and enable effective patient-centered communication. We present a comprehensive patient-created checklist informed by the literature, patient experiences, and IBD specialists, to augment clinical discussions of IBD management and promote shared decision-making. Further research will be important to assess the efficacy and uptake of this checklist by surveying patients and IBD HCPs, and conducting focus groups that examine the effectiveness of clinical care guided by this checklist.