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Published in: BMC Gastroenterology 1/2015

Open Access 01-12-2015 | Research article

Qualitative analysis of patient-centered decision attributes associated with initiating hepatitis C treatment

Authors: Jessica L. Zuchowski, Alison B. Hamilton, Jeffrey M. Pyne, Jack A. Clark, Aanand D. Naik, Donna L. Smith, Fasiha Kanwal

Published in: BMC Gastroenterology | Issue 1/2015

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Abstract

Background

In this era of a constantly changing landscape of antiviral treatment options for chronic viral hepatitis C (CHC), shared clinical decision-making addresses the need to engage patients in complex treatment decisions. However, little is known about the decision attributes that CHC patients consider when making treatment decisions. We identify key patient-centered decision attributes, and explore relationships among these attributes, to help inform the development of a future CHC shared decision-making aid.

Methods

Semi-structured qualitative interviews with CHC patients at four Veterans Health Administration (VHA) hospitals, in three comparison groups: contemplating CHC treatment at the time of data collection (Group 1), recently declined CHC treatment (Group 2), or recently started CHC treatment (Group 3). Participant descriptions of decision attributes were analyzed for the entire sample as well as by patient group and by gender.

Results

Twenty-nine Veteran patients participated (21 males, eight females): 12 were contemplating treatment, nine had recently declined treatment, and eight had recently started treatment. Patients on average described eight (range 5–13) decision attributes. The attributes most frequently reported overall were: physical side effects (83 %); treatment efficacy (79 %), new treatment drugs in development (55 %); psychological side effects (55 %); and condition of the liver (52 %), with some variation based on group and gender. Personal life circumstance attributes (such as availability of family support and the burden of financial responsibilities) influencing treatment decisions were also noted by all participants. Multiple decision attributes were interrelated in highly complex ways.

Conclusions

Participants considered numerous attributes in their CHC treatment decisions. A better understanding of these attributes that influence patient decision-making is crucial in order to inform patient-centered clinical approaches to care (such as shared decision-making augmented with relevant decision-making aids) that respond to patients’ needs, preferences, and circumstances.
Literature
1.
go back to reference Alter MJ, Kruszon-Moran D, Nainan OV, McQuillan GM, Gao F, Moyer LA, et al. The prevalence of hepatitis C virus infection in the United States, 1988 through 1994. N Engl J Med. 1999;341(8):556–62.CrossRefPubMed Alter MJ, Kruszon-Moran D, Nainan OV, McQuillan GM, Gao F, Moyer LA, et al. The prevalence of hepatitis C virus infection in the United States, 1988 through 1994. N Engl J Med. 1999;341(8):556–62.CrossRefPubMed
2.
go back to reference Armstrong GL, Wasley A, Simard EP, McQuillan GM, Kuhnert WL, Alter MJ. The Prevalence of Hepatitis C Virus Infection in the United States,1999 through 2002. Ann Intern Med. 2006;144:705–14.CrossRefPubMed Armstrong GL, Wasley A, Simard EP, McQuillan GM, Kuhnert WL, Alter MJ. The Prevalence of Hepatitis C Virus Infection in the United States,1999 through 2002. Ann Intern Med. 2006;144:705–14.CrossRefPubMed
3.
go back to reference Ponynard T, McHutchison J, Manns M, Trepo C, Lindsay K, Goodman Z, et al. Impact of pegylated interferon alfa-2b and ribavirin on liver fibrosis in patients with chronic hepatitis C. Gastroenterology. 2002;122(5):1303–13.CrossRef Ponynard T, McHutchison J, Manns M, Trepo C, Lindsay K, Goodman Z, et al. Impact of pegylated interferon alfa-2b and ribavirin on liver fibrosis in patients with chronic hepatitis C. Gastroenterology. 2002;122(5):1303–13.CrossRef
4.
go back to reference Shiratori Y, Ito Y, Yokosuka O, Imazeki F, Nakata R, Tanaka N, et al. Antiviral therapy for cirrhotic hepatitis C: association with reduced hepatocellular carcinoma development and improved survival. Ann Intern Med. 2005;142(2):105–14.CrossRefPubMed Shiratori Y, Ito Y, Yokosuka O, Imazeki F, Nakata R, Tanaka N, et al. Antiviral therapy for cirrhotic hepatitis C: association with reduced hepatocellular carcinoma development and improved survival. Ann Intern Med. 2005;142(2):105–14.CrossRefPubMed
5.
go back to reference Spiegel BM, Younossi ZM, Hays RD, Revicki D, Robbins S, Kanwal F. Impact of hepatitis C on health related quality of life: a systematic review and quantitative assessment. Hepatology. 2005;41(4):790–800.CrossRefPubMed Spiegel BM, Younossi ZM, Hays RD, Revicki D, Robbins S, Kanwal F. Impact of hepatitis C on health related quality of life: a systematic review and quantitative assessment. Hepatology. 2005;41(4):790–800.CrossRefPubMed
6.
go back to reference Berenguer J, Alvarez-Pellicer J, Martin PM, López-Aldeguer J, Von-Wichmann MA, Quereda C, et al. Sustained virological response to interferon plus ribavirin reduces liver-related complications and mortality in patients coinfected with human immunodeficiency virus and hepatitis C virus. Hepatology. 2009;50(2):407–13.CrossRefPubMed Berenguer J, Alvarez-Pellicer J, Martin PM, López-Aldeguer J, Von-Wichmann MA, Quereda C, et al. Sustained virological response to interferon plus ribavirin reduces liver-related complications and mortality in patients coinfected with human immunodeficiency virus and hepatitis C virus. Hepatology. 2009;50(2):407–13.CrossRefPubMed
7.
go back to reference Butt AA, Wang X, Moore CG. Effect of hepatitis C virus and its treatment on survival. Hepatology. 2009;50(2):387–92.CrossRefPubMed Butt AA, Wang X, Moore CG. Effect of hepatitis C virus and its treatment on survival. Hepatology. 2009;50(2):387–92.CrossRefPubMed
8.
go back to reference John-Baptiste AA, Tomlinson G, Hsu PC, Krajden M, Heathcote EJ, Laporte A, et al. Sustained responders have better quality of life and productivity compared with treatment failures long after antiviral therapy for hepatitis C. Am J Gastroenterol. 2009;104(10):2439–48.CrossRefPubMed John-Baptiste AA, Tomlinson G, Hsu PC, Krajden M, Heathcote EJ, Laporte A, et al. Sustained responders have better quality of life and productivity compared with treatment failures long after antiviral therapy for hepatitis C. Am J Gastroenterol. 2009;104(10):2439–48.CrossRefPubMed
9.
go back to reference Singal AG, Volk ML, Jensen D. Di Bisceglie AM. A sustained viral response is associated with reduced liver-related morbidity and mortality in patients with hepatitis C virus. Clin Gastroenterol Hepatol: Schoenfeld PS; 2009. Singal AG, Volk ML, Jensen D. Di Bisceglie AM. A sustained viral response is associated with reduced liver-related morbidity and mortality in patients with hepatitis C virus. Clin Gastroenterol Hepatol: Schoenfeld PS; 2009.
10.
go back to reference Veldt BJ, Heathcote EJ, Wedemeyer H, Reichen J, Hofmann WP, Zeuzem S, et al. Sustained virologic response and clinical outcomes in patients with chronic hepatitis C and advanced fibrosis. Ann Intern Med. 2007;147(10):677–84.CrossRefPubMed Veldt BJ, Heathcote EJ, Wedemeyer H, Reichen J, Hofmann WP, Zeuzem S, et al. Sustained virologic response and clinical outcomes in patients with chronic hepatitis C and advanced fibrosis. Ann Intern Med. 2007;147(10):677–84.CrossRefPubMed
11.
go back to reference Lawitz E, Mangia A, Wyles D, Rodriguez-Torres M, Hassanein T, Gordon SC, et al. Sofosbuvir for previously untreated chronic hepatitis C infection. N Engl J Med. 2013;368:1878–87.CrossRefPubMed Lawitz E, Mangia A, Wyles D, Rodriguez-Torres M, Hassanein T, Gordon SC, et al. Sofosbuvir for previously untreated chronic hepatitis C infection. N Engl J Med. 2013;368:1878–87.CrossRefPubMed
12.
go back to reference Zeuzem S, Berg T, Gane E, Ferenci P, Foster GR, Fried MW, et al. Simeprevir increases rate of sustained virologic response among treatment-experienced patients with HCV genotype-1 infection: a phase IIb trial. Gastroenterology. 2014;146:430–41.CrossRefPubMed Zeuzem S, Berg T, Gane E, Ferenci P, Foster GR, Fried MW, et al. Simeprevir increases rate of sustained virologic response among treatment-experienced patients with HCV genotype-1 infection: a phase IIb trial. Gastroenterology. 2014;146:430–41.CrossRefPubMed
13.
go back to reference Jacobson IM, Ghalib RH, Rodriguez-Torres M, et al. SVR results of a once-daily regimen of simeprevir (TMC435) plus sofosbuvir (GS-7977) with or without ribavirin in cirrhotic and non-cirrhotic HCV genotype 1 treatment-naive and prior null responder patients: the COSMOS study. Hepatology. 2013;58:1379A. Jacobson IM, Ghalib RH, Rodriguez-Torres M, et al. SVR results of a once-daily regimen of simeprevir (TMC435) plus sofosbuvir (GS-7977) with or without ribavirin in cirrhotic and non-cirrhotic HCV genotype 1 treatment-naive and prior null responder patients: the COSMOS study. Hepatology. 2013;58:1379A.
14.
go back to reference Sussman NL, Remien CH, Kanwal F. The end of hepatitis C. Clin Gastroenterol Hepatol. 2014;12(4):533–6.CrossRefPubMed Sussman NL, Remien CH, Kanwal F. The end of hepatitis C. Clin Gastroenterol Hepatol. 2014;12(4):533–6.CrossRefPubMed
15.
go back to reference Ilyas JA, Vierling JM. An overview of emerging therapies for the treatment of chronic hepatitis C. Med Clin North Am. 2014;98(1):17–38.CrossRefPubMed Ilyas JA, Vierling JM. An overview of emerging therapies for the treatment of chronic hepatitis C. Med Clin North Am. 2014;98(1):17–38.CrossRefPubMed
16.
go back to reference Innes H, Goldberg D, Dusheiko G, Hayes P, Mills PR, Dillon JF, et al. Patient-important benefits of clearing the hepatitis C virus through treatment: a simulation model. J Hepatol. 2014;60(6):1118–26.CrossRefPubMed Innes H, Goldberg D, Dusheiko G, Hayes P, Mills PR, Dillon JF, et al. Patient-important benefits of clearing the hepatitis C virus through treatment: a simulation model. J Hepatol. 2014;60(6):1118–26.CrossRefPubMed
17.
go back to reference Fraenkel L, McGraw S, Wongcharatrawee S, Garcia-Tsao G. What do patients consider when making decisions about treatment for hepatitis C? Am J Med. 2005;118(12):1387–91.CrossRefPubMed Fraenkel L, McGraw S, Wongcharatrawee S, Garcia-Tsao G. What do patients consider when making decisions about treatment for hepatitis C? Am J Med. 2005;118(12):1387–91.CrossRefPubMed
18.
go back to reference Khokhar OS, Lewis JH. Reasons Why Patients Infected with Chronic Hepatitis C Virus Choose to Defer Treatment: Do They Alter Their Decision with Time? Dig Dis Sci. 2007;52(5):1168–76.CrossRefPubMed Khokhar OS, Lewis JH. Reasons Why Patients Infected with Chronic Hepatitis C Virus Choose to Defer Treatment: Do They Alter Their Decision with Time? Dig Dis Sci. 2007;52(5):1168–76.CrossRefPubMed
19.
go back to reference Tovo CV, de Mattos AA, de Almeida PR. Chronic hepatitis C genotype 1 virus: who should wait for treatment? World J Gastroenterol. 2014;20(11):2867–75.CrossRefPubMedPubMedCentral Tovo CV, de Mattos AA, de Almeida PR. Chronic hepatitis C genotype 1 virus: who should wait for treatment? World J Gastroenterol. 2014;20(11):2867–75.CrossRefPubMedPubMedCentral
20.
go back to reference Cotler SJ, Patil R, McNutt RA, Speroff T, Banaad-Omiotek G, Ganger DR, et al. Patients’ values for health states associated with hepatitis C and physicians’ estimates of those values. Am J Gastroenterol. 2001;96(9):2730–6.CrossRefPubMed Cotler SJ, Patil R, McNutt RA, Speroff T, Banaad-Omiotek G, Ganger DR, et al. Patients’ values for health states associated with hepatitis C and physicians’ estimates of those values. Am J Gastroenterol. 2001;96(9):2730–6.CrossRefPubMed
21.
go back to reference Abraham NS, Naik AD, Street RL. Shared Decision Making in GI Clinic to Improve Patient Adherence. Clin Gastroenterol Hepatol. 2012;10(8):825–7.CrossRefPubMed Abraham NS, Naik AD, Street RL. Shared Decision Making in GI Clinic to Improve Patient Adherence. Clin Gastroenterol Hepatol. 2012;10(8):825–7.CrossRefPubMed
22.
go back to reference Naik AD, Kallen MA, Walder A, Street Jr RL. Improving hypertension control in diabetes mellitus: the effects of collaborative and proactive health communication. Circulation. 2008;117(11):1361–8.CrossRefPubMedPubMedCentral Naik AD, Kallen MA, Walder A, Street Jr RL. Improving hypertension control in diabetes mellitus: the effects of collaborative and proactive health communication. Circulation. 2008;117(11):1361–8.CrossRefPubMedPubMedCentral
23.
go back to reference Naik AD. On the Road to Patient Centeredness. JAMA. 2013;173(3):218–9. Naik AD. On the Road to Patient Centeredness. JAMA. 2013;173(3):218–9.
24.
go back to reference Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361–7.CrossRefPubMedPubMedCentral Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361–7.CrossRefPubMedPubMedCentral
25.
go back to reference Légaré F, Stacey D, Pouliot S, Gauvin FP, Desroches S, Kryworuchko J, et al. Interprofessionalism and shared decision-making in primary care: a stepwise approach towards a new model. J Interprof Care. 2011;25:18–25.CrossRefPubMed Légaré F, Stacey D, Pouliot S, Gauvin FP, Desroches S, Kryworuchko J, et al. Interprofessionalism and shared decision-making in primary care: a stepwise approach towards a new model. J Interprof Care. 2011;25:18–25.CrossRefPubMed
26.
go back to reference Elwyn G, O'Connor A, Stacey D, Volk R, Edwards A, Coulter A, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ. 2006;333(7565):417.CrossRefPubMedPubMedCentral Elwyn G, O'Connor A, Stacey D, Volk R, Edwards A, Coulter A, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ. 2006;333(7565):417.CrossRefPubMedPubMedCentral
27.
go back to reference Rosedale MT, Strauss SM. How persons with chronic hepatitis C in residential substance abuse treatment programs think about depression and interferon therapy. J Am Psychiatr Nurses Assoc. 2010;16(6):350–6.CrossRefPubMed Rosedale MT, Strauss SM. How persons with chronic hepatitis C in residential substance abuse treatment programs think about depression and interferon therapy. J Am Psychiatr Nurses Assoc. 2010;16(6):350–6.CrossRefPubMed
28.
go back to reference Treloar C, Hopwood M. “Look, I’m fit, I’m positive and I’ll be all right, thank you very much”: coping with hepatitis C treatment and unrealistic optimism. Psychol Health Med. 2008;13(3):360–6.CrossRefPubMed Treloar C, Hopwood M. “Look, I’m fit, I’m positive and I’ll be all right, thank you very much”: coping with hepatitis C treatment and unrealistic optimism. Psychol Health Med. 2008;13(3):360–6.CrossRefPubMed
29.
go back to reference Fraenkel L, McGraw S, Wongcharatrawee S, Garcia-Tsao G. Patients’ experiences related to anti-viral treatment for hepatitis C. Patient Educ Couns. 2006;62(1):148–55.CrossRefPubMed Fraenkel L, McGraw S, Wongcharatrawee S, Garcia-Tsao G. Patients’ experiences related to anti-viral treatment for hepatitis C. Patient Educ Couns. 2006;62(1):148–55.CrossRefPubMed
30.
go back to reference Bova C, Ogawa LF, Sullivan-Bolyai S. Hepatitis C treatment experiences and decision making among patients living with HIV infection. J Assoc Nurses AIDS Care. 2010;21(1):63–74.CrossRefPubMed Bova C, Ogawa LF, Sullivan-Bolyai S. Hepatitis C treatment experiences and decision making among patients living with HIV infection. J Assoc Nurses AIDS Care. 2010;21(1):63–74.CrossRefPubMed
31.
go back to reference Ogawa LM, Bova C. HCV treatment decision-making substance use experiences and hepatitis C treatment decision-making among HIV/HCV Coinfected Adults. Subst Use Misuse. 2009;44(7):915–33.CrossRefPubMed Ogawa LM, Bova C. HCV treatment decision-making substance use experiences and hepatitis C treatment decision-making among HIV/HCV Coinfected Adults. Subst Use Misuse. 2009;44(7):915–33.CrossRefPubMed
32.
go back to reference Osilla KC, Ryan G, Bhatti L, Goetz M, Witt M, Wagner G. Decision attributes that influence an HIV coinfected patient’s decision to start hepatitis C treatment. AIDS Patient Care STDS. 2009;23(12):993–9.CrossRefPubMedPubMedCentral Osilla KC, Ryan G, Bhatti L, Goetz M, Witt M, Wagner G. Decision attributes that influence an HIV coinfected patient’s decision to start hepatitis C treatment. AIDS Patient Care STDS. 2009;23(12):993–9.CrossRefPubMedPubMedCentral
33.
go back to reference Hughes KA. Comparing pretesting methods: Cognitive interviews, respondent debriefing, and behavior coding. U.S. Bureau of the Census Statistical Research Division Research Report Series: Survey Methodology. 2004:1–20. Hughes KA. Comparing pretesting methods: Cognitive interviews, respondent debriefing, and behavior coding. U.S. Bureau of the Census Statistical Research Division Research Report Series: Survey Methodology. 2004:1–20.
34.
go back to reference Averill JB. Matrix analysis as a complementary analytic strategy in qualitative inquiry. Qual Health Res. 2002;12(6):855–66.CrossRefPubMed Averill JB. Matrix analysis as a complementary analytic strategy in qualitative inquiry. Qual Health Res. 2002;12(6):855–66.CrossRefPubMed
35.
go back to reference Glaser BG. The constant comparative method of qualitative analysis. Soc Probl. 1965;12:436–45.CrossRef Glaser BG. The constant comparative method of qualitative analysis. Soc Probl. 1965;12:436–45.CrossRef
36.
go back to reference Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. New Brunswick, NJ: Aldine Publishing Company; 1967. Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. New Brunswick, NJ: Aldine Publishing Company; 1967.
37.
go back to reference Boeije H. A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Qual Quant. 2002;35:391–409.CrossRef Boeije H. A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Qual Quant. 2002;35:391–409.CrossRef
38.
go back to reference Hinojosa‐Lindsey M, Arney J, Heberlig S, Kramer JR, Street Jr RL, El‐Serag HB, et al. Patients’ intuitive judgments about surveillance endoscopy in Barrett’s esophagus: a review and application to models of decision‐making. Dis Esophagus. 2013;26(7):682–9.PubMedPubMedCentral Hinojosa‐Lindsey M, Arney J, Heberlig S, Kramer JR, Street Jr RL, El‐Serag HB, et al. Patients’ intuitive judgments about surveillance endoscopy in Barrett’s esophagus: a review and application to models of decision‐making. Dis Esophagus. 2013;26(7):682–9.PubMedPubMedCentral
39.
go back to reference Reyna VF. A theory of medical decision making and health: fuzzy trace theory. Med Decis Mak. 2008. Reyna VF. A theory of medical decision making and health: fuzzy trace theory. Med Decis Mak. 2008.
40.
go back to reference Street Jr RL, Makoul G, Arora NK, Epstein RM. How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Educ Couns. 2009;74:295–301.CrossRefPubMed Street Jr RL, Makoul G, Arora NK, Epstein RM. How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Educ Couns. 2009;74:295–301.CrossRefPubMed
41.
go back to reference Naik AD, McCullough LB. Health Intuitions Inform Patient-Centered Care. Am J Bioeth. 2014;14(6):1–3.CrossRefPubMed Naik AD, McCullough LB. Health Intuitions Inform Patient-Centered Care. Am J Bioeth. 2014;14(6):1–3.CrossRefPubMed
42.
go back to reference Fraenkel L, Peters E, Charpentier P, Olsen B, Errante L, Schoen RT, et al. Decision tool to improve the quality of care in rheumatoid arthritis. Arthritis Care Res (Hoboken). 2012;64(7):977–85. Fraenkel L, Peters E, Charpentier P, Olsen B, Errante L, Schoen RT, et al. Decision tool to improve the quality of care in rheumatoid arthritis. Arthritis Care Res (Hoboken). 2012;64(7):977–85.
43.
go back to reference Naik AD, El-Serag HB. Decision Aids for Shared Decision-Making in Barrett’s Esophagus Surveillance. Clin Gastroenterol Hepatol. 2015;13(1):91.CrossRefPubMed Naik AD, El-Serag HB. Decision Aids for Shared Decision-Making in Barrett’s Esophagus Surveillance. Clin Gastroenterol Hepatol. 2015;13(1):91.CrossRefPubMed
44.
go back to reference Ho SB, Groessl E, Dollarhide A, Robinson S, Kravetz D, Dieperink E. Management of Chronic Hepatitis C in Veterans: The Potential of Integrated Care Models. Am J Gastroenterol. 2008;103:1810–23.CrossRefPubMed Ho SB, Groessl E, Dollarhide A, Robinson S, Kravetz D, Dieperink E. Management of Chronic Hepatitis C in Veterans: The Potential of Integrated Care Models. Am J Gastroenterol. 2008;103:1810–23.CrossRefPubMed
Metadata
Title
Qualitative analysis of patient-centered decision attributes associated with initiating hepatitis C treatment
Authors
Jessica L. Zuchowski
Alison B. Hamilton
Jeffrey M. Pyne
Jack A. Clark
Aanand D. Naik
Donna L. Smith
Fasiha Kanwal
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Gastroenterology / Issue 1/2015
Electronic ISSN: 1471-230X
DOI
https://doi.org/10.1186/s12876-015-0356-5

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