Enhancing Self-Management: The Importance of Patient/Provider Interactions, Adaptive Work and Adaptive Leadership

Purpose: Treatment for chronic hepatitis C had changed dramatically because of a blood test for a genetic polymorphism near the interleukin 28B gene and two new protease inhibitors that enhance treatment response.  The polymorphism is a strong predictor of cure for patients with genotype 1 infection.  However, the protease inhibitors add complexity and worsen symptoms compared to prior treatments. This study explored how providers share the genetic information and examined how genetic information influence patents’ self-management (SM) of symptoms during treatment.  The adaptive leadership framework was used to describe patient-provider relationships by distinguishing between technical work (done by provider), adaptive work (done by the patient) and adaptive leadership and how these promoted or posed barriers to patients’ SM in the context of the genetic marker.

Methods: In a mixed-methods longitudinal case study (n=8), we interviewed patients and providers immediately after the index encounter, followed by patient telephone-interviews over 12-weeks (8 data collection points). We analyzed interviews using open coding and theme identification.  We collected quantitative scores on self-management, illness perception, symptoms, and viral load and these were analyzed with qualitative data to plot symptom trajectories in relation to SM and adaptive work.

Results: Adaptive challenges (e.g., fatigue, adherence, side effects) were overwhelming. Severity of symptoms fluctuated with patients’ adaptive capacity for SM.  Providers’ adaptive leadership strategies were limited primarily to raising the patients’ awareness of expected symptom challenges of treatment.  Providers focused on relaying technical information about medication and adherence.  Missed opportunities for assisting patients with adaptive work to improve self-management were evident.  Providers placed little emphasis on expected treatment response predicted by genotype.

 Conclusion: The study provided knowledge for developing interventions for enhancing adaptive leadership behaviors of providers that facilitate adaptive capacity of patients. System changes may be needed because too much information is transferred in the index encounter.