Treatment for chronic hepatitis C (CHC) will undergo a dramatic change this year when a new blood test for a genetic polymorphism near the interleukin 28B (IL28B) gene and two newly approved protease inhibitors are used to enhance patient response. The polymorphism is a strong predictor of treatment response for patients with genotype 1 infection and the two protease inhibitors may cure CHC. With genetic test results guiding the new therapy that is expected to worsen symptoms, provider interactions with patients have even greater potential to influence symptom trajectories and self-management (SM). Thus, this study will explore how providers (physicians, physician assistants, and nurses) interact with patients to share the new information and examine whether the way it is shared influences patents'symptoms and SM over time. The adaptive leadership framework provides a useful way to describe the patient-provider relationship by distinguishing between technical work, adaptive challenges and adaptive leadership. This 2 year exploratory mixed-methods longitudinal case study (n=18) will describe patients'and providers'explanations of how and why they engage in technical work (T-WORK), adaptive work (A-WORK), and adaptive leadership (A-LEAD) and how these strategies promote or pose barriers to patients'SM in the context of the new genetic test results and treatments.
Specific aims are to: 1) Examine how T-WORK, A- WORK and A-LEAD influence patients'perceptions of their likelihood of cure and how this work relates to SM during 24 weeks of treatment for CHC;2) Describe providers'use of T-WORK and A-LEAD approaches during clinical encounters and 3) Describe the trajectories of illness perceptions, symptoms, viral load, and SM in relation to patient and provider reports of T-WORK, A-WORK and A-LEAD from the index clinical encounter to the follow-up treatment response encounter (approximately 24 weeks). We will interview patients and providers after the index clinical encounter to explore their explanations of T-WORK, A-WORK, and A-LEAD and then interview each patient six times by telephone over 24 weeks of treatment to explore how and why they engage in SM and how the T-WORK and A-LEAD of providers promotes or poses barriers to SM. Patients and providers will be interviewed at the end of treatment. The following measures collected over time allow us to describe A-WORK that supports SM: Patient Activation Measure, M.D. Anderson Symptom Inventory, viral load and the Control/Cure subscale of the Illness Perception Scale. There are 8 data collection points. The patient case is the unit of analysis. Scores will be calculated for each instrument and used to plot trajectories o symptoms for each participant. Data from clinical encounters and in-depth interviews will be coded using manifest content analysis, an approach used to explore visible, obvious meaning in the data from multiple sources. The qualitative and quantitative data will be integrated using joint matrix analyses.

Public Health Relevance

In order to promote self-management and adherence in patients with chronic hepatitis C, the most common blood-borne infection in the U.S., it is essential to identify new ways of managing the clinical encounter. The adaptive leadership framework provides a useful way to describe the patient-provider relationship by distinguishing between technical and adaptive work, and adaptive leadership to enhance self-management and thus improve the treatment trajectory for these patients.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Exploratory/Developmental Grants (R21)
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Special Emphasis Panel (ZRG1-NRCS-G (08))
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Marden, Susan F
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Duke University
Schools of Nursing
United States
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