The lived experience of interferon-free treatments for hepatitis C: A thematic analysis |
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| Affiliation: | 1. Regional Infectious Diseases Unit, Western General Hospital, Crewe Road South, Edinburgh EH4 2XU, United Kingdom;2. School of Health and Social Care, Edinburgh Napier University, Sighthill Campus, Sighthill Court, Edinburgh EH11 4BN, United Kingdom;3. Substance Misuse Directorate, NHS Lothian, Woodlands House, Astley Ainslie Hospital, 133 Grange Load, Edinburgh EH9 2HL, United Kingdom;4. Department of Nursing and Community Health, School of Health and Life Sciences, Glasgow Caledonian University, Cowcaddens Road, Glasgow G4 0BA, United Kingdom;5. School of Molecular, Genetic and Population Health Sciences, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG, United Kingdom;1. Center for Liver Diseases, Department of Medicine, Inova Fairfax Hospital, Falls Church, VA, United States;2. Betty and Guy Beatty Center for Integrated Research, Inova Health System, Falls Church, VA, United States;3. Johann Wolfgang Goethe University, Frankfurt, Germany;4. Royal Free Hospital, London, England, UK;5. Hospital Universitario Val d’Hebron, Barcelona, Spain;6. Hôpital Henri Mondor, Université Paris-Est, Créteil, France;7. Academic Medical Center, Amsterdam, The Netherlands;8. Karolinska Institutet, Karolinska University Hospital, Huddinge, Stockholm, Sweden;1. Department of Infection, Heart of England NHS Foundation Trust, Bordesley Green East, Birmingham B9 5SS, United Kingdom;2. Public Health England Birmingham Laboratory, National Infection Service, University Hospitals Birmingham Foundation Trust, Bordesley Green East, Birmingham B9 5SS, United Kingdom;3. West Midlands East Health Protection Team, Public Health England, 5 St Philip''s Place, Birmingham B3 2PW, United Kingdom;1. East of Scotland Specialist Virology Centre, Royal Infirmary of Edinburgh, 51 Little France Crescent, Edinburgh, Scotland, UK;2. Health Protection Scotland, Meridian Court, 5 Cadogan Street, Glasgow, Scotland, UK;3. Glasgow Caledonian University, Cowcaddens Rd, Glasgow, Lanarkshire, Scotland, UK;4. NHS Tayside, Medical Research Institute, University of Dundee, Ninewells Hospital, Dundee, Scotland, UK;5. Division of Clinical and Surgical Sciences, University of Edinburgh, Edinburgh, Scotland, UK;6. Department of Infectious Diseases, Gartnavel General Hospital, Glasgow, UK;7. Glasgow Royal Infirmary, Glasgow, Scotland, UK;8. West of Scotland Specialist Virology Centre, Glasgow Royal Infirmary, Glasgow, Scotland, UK;1. Center for Liver Diseases, Department of Medicine, Inova Fairfax Hospital, Falls Church, Virginia;3. Betty and Guy Beatty Center for Integrated Research, Inova Health System, Falls Church, Virginia;4. Center for Outcomes Research in Liver Disease, Washington, District of Columbia;6. Texas Liver Institute, University of Texas Health, San Antonio, Texas;5. Auckland Clinical Studies, Auckland, New Zealand;7. Quest Clinical Research, San Francisco, California;12. Division of Gastroenterology, University of Pennsylvania, Philadelphia, Pennsylvania;8. Department of Medicine, NYU Langone Health, New York, New York;10. Duke Clinical Research Institute, Duke University, Durham, North Carolina;9. Clinical Research at Gilead Sciences, Foster City, California;1. The Kirby Institute, UNSW Sydney, Sydney, Australia;2. CHUM Research Centre (CRCHUM), Centre Hospitalier de l’Université de Montréal, Montréal, Canada;3. Department of Family and Emergency Medicine, Faculty of Medicine, Université de Montréal, Montréal, Canada;4. CHIP, Rigshospitalet, University of Copenhagen, Denmark;5. Barcelona Institute of Global Health (ISGlobal), Hospital Clínic, Barcelona, Spain;6. Department of Infectious Diseases, Akershus University Hospital, Lørenskog, Norway;7. Arud Centres of Addiction Medicine, Zurich, Switzerland;8. Centre for Social Research in Health, UNSW Sydney, Sydney, Australia;9. School of Social & Community Medicine, University of Bristol, Bristol, United Kingdom;10. Disease Elimination Program, Burnet Institute, Melbourne, Australia;11. Médecins sans Frontières, Geneva, Switzerland;12. Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine, Sydney, Australia;13. Institute for Clinical Medicine, University of Oslo, Norway;14. Department of Gastroenterology, Oslo University Hospital, Norway;15. National Drug and Alcohol Research Centre, UNSW Australia, Sydney, Australia;p. University of Helsinki, Helsinki, Finland;q. National Institute for Health and Welfare, Helsinki, Finland;r. Australian Injecting & Illicit Drug Users League, Canberra, Australia;s. Ninewells Hospital and Medical School, Dundee, United Kingdom;t. Toronto Centre for Liver Disease, Sandra Rotman Centre for Global Health, University of Toronto, Toronto, Canada;u. The Liver Unit, Queen Mary University of London, London, United Kingdom;v. School of Health and Life Sciences, Glasgow Caledonian University, Glasgow, United Kingdom;w. Health Protection Scotland, Glasgow, United Kingdom;x. Centre for Interdisciplinary Addiction Research, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany;y. Department of Gastroenterology and Hepatology, Ziekenhuis Oost Limburg, Genk, Belgium;z. Department of Hepatology, UZ Leuven, Leuven, Belgium;1. Faculty of Medicine and Life Sciences, Hasselt University, Hasselt, Belgium;2. Institute of Neuropsychiatry & Addictions-Hospital del Mar, IMIM (Hospital del Mar Medical Research Institute), Universitat Autònoma de Barcelona, Barcelona, Spain;3. Spectrum CIC, Wakefield, United Kingdom;4. Division of General Internal Medicine, Department of Medicine, Albert Einstein College of Medicine and Montefiore Medical Center, Bronx, New York, United States;5. University of Oslo, Oslo, Norway;6. Abdominal Center, Helsinki University Hospital, Helsinki, Finland;7. Santa Chiara University Hospital, University of Pisa, Italy |
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| Abstract: | BackgroundInternational discourse concerning the evolution in hepatitis C virus (HCV) therapy has tended to focus on improving outcomes, shortened treatment length and reduced side-effects of interferon-free regimens. How these treatments are being understood and experienced by the people receiving them has so far been overlooked. This study therefore aimed to explore the lived experience of individuals taking interferon-free HCV therapies.MethodsData were generated through 16 semi-structured interviews with a purposive sample of eight participants, recruited from a university hospital in Scotland. The interviews took place between June 2015 and March 2016, before and after a period of interferon-free HCV treatment. The data were interrogated using a thematic analysis, underpinned by social phenomenological theory.ResultsThree overriding themes were identified. ‘Expectations and realisations’ characterised the influence that interferon continued to cast over interferon-free treatment, contrasting the practicalities of taking interferon-free therapy with preconceived notions. ‘An honour and a pleasure’ portrayed a positive experience of an undemanding therapy, yet among those with a history of drug use, was also positioned as a privilege, associated with feelings of luck and guilt. ‘Treatment needs’ illustrated the strategies participants used to search for treatment efficacy, and the value those with a significant history of drug use placed on support. One nonconforming case is then discussed to enhance rigour and trustworthiness.ConclusionThis is the first qualitative exploration of the experience of interferon-free HCV treatment reported globally. The results from this study suggest a cultural lag exists between the pharmacological developments which have been witnessed, and societal understandings of them. This has implications for the way services meet the needs of, and offer therapy to, HCV positive individuals. |
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| Keywords: | Antiviral agents Hepatitis C Interferon-free Lived experience Qualitative research Therapeutics |
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