Patient Self-management and Gene Guided Therapy for Chronic Hepatitis C

This study will explore ways to improve the effectiveness of patient Self Management at a
time when genetic test results guide new treatments that will dramatically increase the
possibility of cure of the hepatitis C virus.The study will also focus on the interactions
between provider and patients and the ways that technical work, adaptive work and adaptive
leadership foster patient self-management.This proposed 2 year exploratory mixed-methods 12
longitudinal case study will explore patients' and providers' explanations for how and why
they engage in technical work, adaptive work, and adaptive leadership and the ways in which
these strategies promote or pose barriers to patients' self-management of Chronic Hepatitis
C in the context of the new genetic test results and treatments. Specific aims are to:

1: Examine how technical work, adaptive work and adaptive leadership influence patients'
perceptions of their likelihood of cure and how this work relates to self-management during
12 to 24 weeks of treatment for Chronic Hepatitis C. Research questions are: 1.1) How do
patients describe their interactions with the providers? 1.2) How do these interactions
shape patients' perceptions of the likelihood of cure? 1.3) How do patients' understanding
of their interactions with the provider promote the use of or pose barriers to
self-management during treatment?

AIM 2: Describe providers' use of technical work, and adaptive leadership approaches during
clinical encounters,to include nurse education visits. Research questions are:

2.1) What technical work, and adaptive leadership approaches do providers use when sharing
treatment information with patients during the clinical encounters. 2.2) What explanations
do providers give for how and why they use technical work and adaptive leadership
approaches? AIM 3: Describe the trajectories of illness perceptions(Control/Cure sub-scale -
Illness Perception Scale), symptoms (M.D. Anderson Symptom Inventory) , viral load, and
self-management (Patient Activation Measure) in relation to patient and provider reports of
technical work, adaptive work, and adaptive leadership from the index clinical encounter to
the follow-up treatment response encounter (ranging from 12 to 24 weeks).