title: Physical, social, and psychological consequences of treatment for hepatitis C : a community-based evaluation of patient-reported outcomes.
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.
authors: Kaiser Permanente Division of Research, Viral Hepatitis Registry, Oakland, CA, USA. michele.manos@kp.org
authors: M Michele
authors: MM
authors: Manos
authors: Chanda K
authors: CK
authors: Ho
authors: Rosemary C
authors: RC
authors: Murphy
authors: Valentina A
authors: VA
authors: Shvachko
mesh_terms: D000328:Adult; D017677:Age Distribution; D000998:Antiviral Agents / Q000627:therapeutic use; D005260:Female; D006526:Hepatitis C / Q000188:drug therapy* / Q000453:epidemiology / Q000523:psychology*; D006801:Humans; D016898:Interferon-alpha / Q000627:therapeutic use; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance / Q000706:statistics & numerical data; D011092:Polyethylene Glycols / Q000627:therapeutic use; D011159:Population Surveillance; D012254:Ribavirin / Q000627:therapeutic use; D057566:Self Report / Q000706:statistics & numerical data*; D017678:Sex Distribution; D012938:Social Perception; D012944:Social Support; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014481:United States / Q000453:epidemiology
chemical_list: D000998:Antiviral Agents; D016898:Interferon-alpha; C571406:PEG-IFN-SA; D011092:Polyethylene Glycols; D012254:Ribavirin