Illness perception about hepatitis C virus infection: a cross-sectional study from Khyber Pakhtunkhwa Pakistan

BACKGROUND: Hepatitis C virus (HCV) infection is a debilitating chronic health problem and can be fatal if left untreated. Illness perceptions are self-manifested beliefs that influence the ability of individuals to cope with their disease and perceive it as manageable or threatening condition. Limited evidence is available from low resource settings regarding patient perception about HCV. In this study, we aimed to assess the perception of individuals with HCV, the impact of their sociodemographic and clinical characteristics on their HCV perception, and its link to patient-oriented treatment outcomes. METHODS: A cross-sectional survey was undertaken enrolling individuals with HCV who attended Hepatitis C clinics at two hospitals of Khyber Pakhtunkhwa, Pakistan. Illness perception was measured using Brief Illness Perception Questionnaire (BIPQ). Descriptive statistics, Kruskal Wallis tests and Mann Whitney U tests were performed to study patient sociodemographic and clinical characteristics and to analyze the questionnaire results. Multivariable linear regression was used to assess determinants associated with perception scores. RESULTS: Participants represented poor HCV perception and their overall mean BIPQ score was 43.35, SD = 13.15. Participants had a low degree of understanding about their illness (mean coherence score = 2.92, SD = 1.85). Individuals with more than four years, compared to less than one year, of estimated HCV infection were more likely to view that their illness would continue (mean timeline score = 6.27, SD = 2.50 versus 5.36, SD = 2.53; respectively, p < 0.01). Similarly, individuals with hepatic cirrhosis, compared to without, were more likely to attribute symptoms to their disease (mean identity score = 5.48, SD = 2.14 versus 4.89, SD = 2.38; respectively, p = 0.04). Female participants reported higher degrees at which the illness affected them emotionally (i.e., emotional representation) and lower coherence about HCV than males (p = 0.04 and 0.006, respectively). Individuals who did not achieve sustained virological response 24 weeks after treatment with interferon-based therapy, compared to treatment naïve individuals, reported lower trust in being successfully treated with newer anti-HCV agents (i.e., direct acting antivirals) (p = 0.029). However, multivariable linear regression revealed that no sociodemographic or clinical determinants were associated with a higher BIPQ score (i.e., more threatening, or negative perceptions). CONCLUSION: Individuals with HCV in Pakistan generally report threatening or negative views about HCV infection. Lack of trust in treatment efficacy was also apparent, especially in those who experienced failed anti-HCV treatments in the past. Healthcare professionals should consider these perceptions when treating individuals with HCV to optimize their compliance by aligning their perception with the high effectiveness of current anti-HCV therapies. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12879-022-07055-5.