Patients

The questionnaire for patients with hepatitis C was distributed among the patients who are receiving the interferon therapy at the Clinic for Infectious Diseases and Febrile Illnesses at the University Medical Centre Ljubljana (Figure 1). We discussed with the patients in person, explained them the idea of our project and asked them to participate in our survey.

Figure 1. Team members Zala and Fedja in the examination room with Jelka Meglič Volkar, MD, a specialist infectologist (first from the left).

24 patients infected with hepatitis C filled out the questionnaire. The majority of them were male (67%) and the average age of the patients was 45 years. Half of the patients graduated from high school, 29% finished only primary school and 21% of patients had a university degree.

The number of patients participating in the survey was small therefore we cannot draw any strong conclusions from the results; however they do provide some interesting views. A comparison of all the results of our survey including the general (mostly student) population and journalists can be found here: Journalists and general public.

59% of the patients reported mild (34%) or strong (25%) side effects and only two patients had no side effects (Figure 2, left). One of the patients felt that the need for the regular subcutaneous application of interferon has a strong influence on the quality of his life, 63% of the patients felt this has medium influence and 33% of the patients felt that this type of application has no influence (Figure 2, right). The majority (71%) of patients felt that it would be a good idea to invent a new drug delivery system, which would prevent subcutaneous injections of interferon and only one patient disagreed with this.

The results of our survey showed that patients with hepatitis C showed enthusiasm for this new type of therapy. 71% of them think it would be beneficial to develop a therapy with human cells which would produce biological drugs inside the diseased tissue (Journalists and general public, Figure 5). The most important requirements for this type of therapy are, in the view of patients, efficiency (57%), safety (33%) and price (10%) (Figure 3).

Figure 3. Which of the following would be most important for you regarding [treatment with microencapsulated synthetic cellular device] treatment: efficiency, safety, price, ethical considerations?

Patients are the only group that could provide information on questions related to the specifics of their experience with biological therapy. We noticed that a large majority of patients receiving biological therapy exhibits side effects (87%). Injecting biological drugs had in this context only medium effect on the quality of their life (Figure 2).

Among the considerations that would affect the application of therapy, patients considered as most important efficiency, followed by safety (Figure 3). Price does not seem to be a very important issue, which reflects the organization of health care in Slovenia. It is interesting that patients consider, in contrast to the general public, that the access to biological drugs in Slovenia is satisfying (Journalists and general public, Figure 2).

We were pleased to see that 50% of the questioned patients would be willing to participate in a clinical study of this type of therapy, 37% might consider it and 13% of patients would not be willing to participate (Figure 4, left). Certainly clinical studies could proceed only after stringent preclinical studies would show favorable results and safety of this type of therapy. Involvement of genetic modification as the technique that has a bad connotation in the general public did not sway the majority of patients (70%) to change their previous answer from yes or maybe to no (Figure 4, right).