Filling the gaps: Information sources and needs of patients with intestinal failure and their caregivers

Background Health information-seeking is a central strategy used by patients and caregivers to cope with chronic illness. This study investigated the sources of disease-specific information utilized by adult patients with IF and caregivers of pediatric IF patients to identify existing information needs. Materials and methods Using a community-driven research design, we developed a cross-sectional questionnaire to identify information sources and needs. The survey was disseminated via relevant patient support organizations, personal networks, and disease-specific social media support groups. Descriptive and univariate analyses were conducted to identify common information sources and needs and assess differences by respondent type. Results A total of 283 respondents, consisting of adult patients with a history of IF (n = 167) and caregivers of pediatric patients with a history of IF (n = 116), completed the survey. Only half were receiving care via an intestinal rehabilitation program. The most frequently used sources of IF-specific information were specialist providers or teams (64%) and social media support groups (52%); a significantly larger share of patients than caregivers reported general practitioners as an information source (30% vs. 13%, p = 0.001). Top information needs pertained to 1) better understanding the current state of the field, 2) optimizing day-to-day life with IF and improving quality of life, and 3) supporting mental health and fostering a sense of connection. Conclusion Within this sample of engaged and resource-seeking participants, we found respondents utilized multiple information sources and expressed a range of information needs. We offer several suggestions for addressing these needs.