Exploring Self-Reported Recent Greatest Problems Among Individuals With and Without Chronic Traumatic Brain Injury Via Open-Text Survey Responses

Research Objectives: To characterize recent greatest problems or needs of people living with traumatic brain injury (TBI). We also solicited recent greatest problems and needs among individuals with other neurological conditions, individuals with mental health conditions, and healthy controls to provide context for people with TBI.

Design: Secondary analysis of open-text responses from an anonymous nationwide electronic survey study (Juengst et al., 2019). Qualitative coding was completed by independent coding pairs using the Mayo-Portland Adaptability Inventory-4 items as a conceptual coding framework. Additional codes were developed to describe problems beyond those captured by the MPAI-4.

Setting: Community

Participants: The sample was 2,861 community-dwelling adults, divided into 4 groups: 1) participants with TBI (all severities; n = 274); 2) participants with other neurological conditions without a history of TBI (n = 289); 3) participants with mental health conditions without a history of TBI or other neurological conditions (n = 454); and 4) healthy controls with no history of mental health or neurological conditions (n = 1,844).

Interventions: N/A

Main Outcome Measures: The primary outcome was a single, open-ended question: “What was your greatest problem or need over the past 2 weeks?”

Results: Among people with TBI, Money Management (19.7%), None (10.4%), and Anxiety (7.7%) were the three most common types of problems. Notably, “None” (25.4%) was the most common code among healthy controls. Across all groups, “Money Management”, “Work/School”, “Family/Significant Relationships”, and “None” emerged as four of the five top categories; however, the distribution of these codes varied across groups. Additional patterns across groups were observed.

Conclusions: This study provides meaningful information to enhance our understanding of the greatest problems faced by TBI survivors from a patient-centered perspective. The findings also consider multiple clinical and healthy control groups to capture similarities and differences to people with TBI. These person-driven concerns can inform clinical practice and research directions.

Author(s) Disclosures: The authors report research funding from the NIH Eunice Kennedy Shriver NICHD, NSF GRFP, and NIDILRR. There are no conflicts of interest to disclose.