Patient Lived Experiences to Inform Clinical Practice in Managing Chronic Pain After Spinal Cord Injury

Abstract

<h3>Research Objectives</h3> To explore the impact of chronic pain (CP) on daily life, with focus on the relationship between CP and social wellbeing. To detail discovered differences and similarities between these lived experiences of people managing SCI-related CP and the CP management approaches used by healthcare providers (HCPs). <h3>Design</h3> All participants engaged in semi-structured interviews and survey measures. A subset were observed firsthand for one day in their homes (N=7). Data comes from interview transcripts and ethnographic field notes and was analyzed using thematic content analysis. Themes were related to self-management strategies, relationships with HCPs, and adaptations and coping strategies. Participants' themes were compared to pain treatment approaches, including their understanding of treatments they previously used. <h3>Setting</h3> Large, Midwestern medical center. Ambulatory care. <h3>Participants</h3> Persons with SCI and chronic pain (N=30). <h3>Interventions</h3> N/A. <h3>Main Outcome Measures</h3> Semi-structured interviews, pain and QOL survey measures, ethnographic in-home observations. <h3>Results</h3> Salient themes included: managing CP through the use of distraction, weighing the risks and benefits of pain medications, challenges and successes in physician interactions around CP, and shifts in mindfulness and attitudes towards CP as a way to minimize the impact of CP. In-home observation data supported and demonstrated a number of these themes in real time. The key guidelines for managing CP included: pharmaceuticals, cognitive behavioral therapy, consulting pain specialists, exercise, direct current stimulation, and various alternative medicine approaches. None clearly engaged with patients' expertise. When patient focus was referenced, it was limited to exploring information gathering and social support towards adherence, rather than understanding and leveraging patients' self-efficacy in CP management. <h3>Conclusions</h3> Participants developed and benefited from their own idiosyncratic approaches to CP management, in ways that differed from clinical guidelines. Clinical engagement with patients' self-efficacy around CP, while not eliminating CP, may help patients find ways to effectively manage CP in a way that supports more traditional clinical intervention. A mutual patient-provider alliance may leverage patients' own expertise in CP self-management, with better CP outcomes. <h3>Author(s) Disclosures</h3> There are no conflicts of interest to report.