Development of a Conceptual Disease Model of the Patient Experience of Post-Traumatic Stress Disorder
Introduction: A conceptual disease model (CDM) was developed using qualitative research methodology in order to provide a comprehensive understanding of the patient experience with post-traumatic stress disorder (PTSD).
Methods: Twenty adult participants completed concept elicitation (CE) interviews discussing their experience with PTSD. A semi-structured interview guide was used to conduct the 60-minute web-based interviews and included open-ended and probing questions informed by a targeted conceptual literature review and interviews with five expert clinicians. Participants rated severity and bothersomeness (0=not bothersome at all to 10=extremely bothersome) for each reported concept. Responses were coded using Atlas.ti software for thematic analysis.
Results: Participants reported 26 signs/symptoms and 16 impacts. The most frequently reported symptoms included disturbing dreams (95%), desire to feel control over one’s environment (95%), distressing memories (95%), scattered thinking (90%), fatigue (90%) and difficulty with memory (95%). Signs/symptoms commonly reported as highly bothersome included chronic pain (8.9/10), constantly “being on the lookout” (8.4/10), distressing memories (8/10), insomnia/nighttime restlessness (7.9/10), heightened sense of danger (7.8/10) and fatigue (7.8/10). Constantly “being on the lookout” (39%), difficulty falling asleep (22%), disturbing dreams (22%), and scattered thinking/concentration difficulties (22%) were the most frequently reported worst symptoms. In addition to emotional difficulties, the most commonly reported impacts included avoidance of people, places or activities (95%), trigger avoidance (90%), and cognition difficulties (85%).
Conclusion: A new CDM informed by a targeted literature review and direct input from clinicians and patients describes the debilitating burden of PTSD and identifies treatment needs that are important from the patient perspective.
