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"Fighting an uphill battle": experience with the HCV triple therapy: a qualitative thematic analysis
Manuela Rasi, Patrizia Künzler-Heule, Patrick Schmid
1Cantonal Hospital St, Gallen, Division of Infectious Diseases and Hospital Epidemiology, 9007 St, Gallen, Switzerland. dunja.nicca@unibas.ch.
Insights
Hepatitis C virus (HCV) patients on protease-inhibitor (PI) triple therapy found it a struggle due to side effects, despite high motivation for a cure. They require systematic support for symptom management during treatment.
Area of Science:
- Hepatology and Viral Gastroenterology
- Patient-Reported Outcomes
- Qualitative Health Research
Background:
- Hepatitis C virus (HCV) poses a significant global health burden, with mortality rates triple that of the general population.
- First-generation direct-acting antivirals (DAAs), specifically protease inhibitors (PIs) like telaprevir and boceprevir, were introduced in 2011 for genotype 1 HCV patients.
- While effective, PI-based triple therapy regimens are complex and associated with common side effects, with limited understanding of patient experiences and coping mechanisms.
Purpose of the Study:
- To explore the lived experiences of patients undergoing protease-inhibitor-based triple therapy for Hepatitis C virus (HCV).
- To identify the support needs of HCV patients managing the complexities and side effects of PI-based triple therapy.
Main Methods:
- A qualitative research design was employed.
- Patients with ongoing, completed, or discontinued PI treatment experience were recruited from three outpatient clinics using maximum variation sampling.
- Data were collected through open-ended interviews and analyzed using thematic analysis.
Main Results:
- Thirteen patients participated, all initially highly motivated for a potential cure but later describing treatment as a struggle.
- The overarching theme identified was "Fighting an uphill battle," reflecting the existential challenges and negative consequences of managing side effects.
- Sub-themes included "encountering surprises," "dealing with disruption," and "reaching the limits of systems," illustrating the patient journey.
Conclusions:
- HCV patients on outpatient PI-based triple therapy require systematic support for symptom management.
- Specially trained professionals are needed to advise patients and families, providing rapid responses throughout the complex treatment course.
- This knowledge is crucial for improving treatment support, particularly for difficult-to-treat patients, and understanding the evolution of HCV treatment.
Background:
Hepatitis C virus (HCV) infections are a severe burden on public health worldwide, causing mortality rates triple that of the general population. Since 2011, for both therapy-naive and therapy-experienced genotype 1 patients, the first generation of direct acting antivirals (DAAs), i.e., the protease-inhibitors (PI) telaprevir and boceprevir have been added to existing dual therapies. The therapeutic effect of the resulting triple therapy is striking; however, treatment regimens are complex and commonly cause side effects. Little is known of how patients implement therapy in their daily lives, or of how they deal with these effects.This study aims to describe HCV patients' experiences with protease-inhibitor-based triple therapy and their support needs.
Methods:
A qualitative design was used. Patients from three outpatient clinics, with ongoing, completed or discontinued PI treatment experience were recruited using a maximum variation sampling approach. Open-ended interviews were conducted and analyzed using thematic analysis according to Braun & Clarke (Qual Res Psychol 3:77-101, 2006).
Results:
Thirteen patients participated in the interviews. All described themselves as highly motivated to undergo treatment, since they saw the new therapy as a "real chance" for a cure. However, all later described the therapy period as a struggle. The constitutive theme-"Fighting an uphill battle"- describes the common existential experience of and negative consequences of coping with side effects. The processes that fostered this common experience followed three sub-themes: "encountering surprises", "dealing with disruption" and "reaching the limits of systems".
Conclusion:
HCV patients undergoing outpatient protease-inhibitor-based triple therapy need systematic support in symptom management. This will require specially trained professionals to advise and support them and their families, and to provide rapid responses to their needs throughout this complex course of therapy. As the generation of DAAs for all genotypes, are expected to have less severe side effects, and many HCV patients require treatment, this knowledge can improve treatment support tremendously, especially for patients who are quite difficult to treat. Furthermore, these findings are helpful to illustrate development in HCV treatment.
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