Abstract
Background
Hepatitis C virus (HCV) antiviral therapy entails a long treatment course, as well as significant side effects that can lead to medication non-adherence and premature termination of treatment. Few large studies have comprehensively examined patient perspectives on the treatment experience, particularly the social and personal effects.
Objective
We sought to understand how a diverse group of patients’ lives were affected during HCV treatment, and to obtain suggestions about how to better support patients during treatment.
Methods
On average, 13 months after therapy we interviewed by telephone a consecutive sample of 200 patients treated for hepatitis C with ribavirin and pegylated interferon in a comprehensive, integrated health plan in the years 2008–2010. Mixed (quantitative and qualitative) survey methods were used.
Results
The response rate was 68.9 %. Mean age at treatment was 51 years; 63.0 % were men; and Black, Hispanic, Asian, and White non-Hispanic racial/ethnic groups were similarly represented. Patients whose treatment was managed by nurses or clinical pharmacists (vs. physicians) were more likely to report their providers as being part of their support system (83.5 % vs. 58.9 %; p < 0.001). Most patients reported flu-like symptoms (93.5 %) and psychiatric problems (84.5 %), and 42.5 % reported side effects lasted up to 6 months after treatment. Black patients reported discontinuing treatment prematurely due to side effects more often than non-Blacks (29.4 % vs. 12.1 %; p < 0.001). Physical side effects (69.5 % of patients), psychiatric issues (43.5 %), and employment (27.4 %) were ranked among the three most difficult challenges. Patients desired help in anticipating and arranging work modifications during treatment. Most patients rated peer support, nutritional guidance, and weekly provider contact by telephone as potentially helpful resources for future patients undergoing HCV treatment.
Conclusions
Patient perspectives can help formulate and refine HCV treatment support programs. Effective support programs for diverse populations are crucial as the complexities and costs of HCV treatment increase. The call for greater support from peers, providers, and employers demands new systems such as patient-centered care teams.
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Acknowledgments
This study was supported by The Permanente Medical Group. Dr. Ho was supported by NIH T32 DK060414. We appreciate helpful suggestions from Drs. Carol Somkin, Douglas Corley, and Theodore Levin. We thank the many KPNC HCV treatment providers for their input in designing the interview. Special thanks to Dr. Philip Madvig for his interest in this work and subsequent efforts to bring the results into clinical practice. Most importantly, we thank the patients who generously participated in the PATH-C Study and shared their experiences so openly.
Conflicts of Interest
The authors have no conflicts of interest that are directly relevant to the content of this article
Author Contributions
MM and RM were responsible for study and survey design. RM conducted all patient recruitment and interviews. VS retrieved and analyzed all medical record data and identified eligible patients. CH and RM performed qualitative and quantitative survey data analysis. MM led the project overall and was primarily responsible for manuscript preparation, with contributions from CH and RM. MM is the guarantor for the overall content of this article.
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Manos, M.M., Ho, C.K., Murphy, R.C. et al. Physical, Social, and Psychological Consequences of Treatment for Hepatitis C. Patient 6, 23–34 (2013). https://doi.org/10.1007/s40271-013-0005-4
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DOI: https://doi.org/10.1007/s40271-013-0005-4