The International development of PROQOL-HCV: An instrument to assess the health-related quality of life of patients treated for Hepatitis C virus

BMC Infectious Diseases

Research Article

Eliana Galano¹  Mariliza Henrique Da Silva¹  Christophe Lalanne²  Andrew Richard Armstrong³  Olivier Chassany⁴  Martin Duracinsky⁵  Susan Elizabeth Herrmann⁶  Philippe Sogni⁷  Patrizia M. Carrieri⁸  Vincent Estellon⁹ 

[1] Centro de Referência e Treinamento DST/Aids, Rue santa Cruz, Sao Paulo, Brazil;EA 7334 REMES, Patient-Centered Outcomes Research, University Paris-Diderot, Sorbonne Paris Cité, Paris, France;EA 7334 REMES, Patient-Centered Outcomes Research, University Paris-Diderot, Sorbonne Paris Cité, Paris, France;Australian Institute of Family Studies, Melbourne, Australia;EA 7334 REMES, Patient-Centered Outcomes Research, University Paris-Diderot, Sorbonne Paris Cité, Paris, France;URC-ECO, Hopital Hotel-Dieu, AP-HP, Paris, France;EA 7334 REMES, Patient-Centered Outcomes Research, University Paris-Diderot, Sorbonne Paris Cité, Paris, France;URC-ECO, Hopital Hotel-Dieu, AP-HP, Paris, France;Service de Médecine Interne et d’Immunologie Clinique, Hopital Bicetre, AP-HP, Kremlin-Bicetre, France;Institute for Immunology and Infectious Diseases, Murdoch University, Murdoch, Western Australia, Australia;Service d’Hépatologie, Hopital Cochin, AP-HP, Paris, France;U912 (SE4S), INSERM, Marseille, France;Université Paris Descartes, Paris, France;

关键词: Questionnaires;    Quality of life;    Hepatitis c;    Health status;    Research methods;   

DOI  :  10.1186/s12879-016-1771-0

 received in 2015-12-01, accepted in 2016-08-10,  发布年份 2016

来源: Springer

【 摘 要 】

BackgroundHepatitis C virus (HCV) compromises Health-related Quality of Life (HRQL) with detriments to Physical, Mental and Social health domains. Treatment with interferon and ribavirin is associated with side effects which further impair HRQL. New treatments appear potent, effective and tolerable. However, Patient Reported Outcomes instruments that capture the impact on HRQL for people with hepatitis C are largely non-specific and will be needed in the new treatment era. Therefore, we developed a conceptually valid multidimensional model of HCV-specific quality of life and pilot survey instrument, the Patient Reported Outcome Quality of Life survey for HCV (PROQOL-HCV).MethodsHCV patients from France (n = 30), Brazil (n = 20) and Australia (n = 20) were interviewed to investigate HCV-HRQL issues raised in the scientific literature and by treatment specialists. Interviews were recorded, transcribed and translated into English and French.ResultsFifteen content dimensions were derived from the qualitative analysis, refined and fitted to four domains: (1) Physical Health included: fatigue, pain, sleep, sexual impairment and physical activity; (2) Mental Health: psychological distress, psychosocial impact, and cognition; (3) Social Health: support, stigma, social activity, substance use; (4) Treatment: management, side effects, and fear of treatment failure. The impact of some dimensions extended beyond their primary domain including: physical activity, cognition, sleep, sexual impairment, and the three treatment dimensions. A bank of 300 items was constructed to reflect patient reports and, following expert review, reduced to a 72-item pilot questionnaire.ConclusionWe present a conceptually valid multidimensional model of HCV-specific quality of life and the pilot survey instrument, PROQOL-HCV. The model is widely inclusive of the experience of hepatitis C and the first to include the treatment dimension.

【 授权许可】

CC BY   
© The Author(s). 2016