Patient-focused studies
Patient-focused studies are a very important part of our work at the Healthcare Education Institute. Exploring patients’ needs, asking them about their preferences, challenges and burdens related to the disease allows us to support patient communities more effectively. The research results make it possible to create solutions perfectly tailored to the recipients, to help patients in a wise and effective way. Identifying areas that require support and development also allows us and our partners to take adequate activities in the area of patient advocacy. You can find examples of our studies below.
Research on the quality of life and treatment preferences of patients with Fabry disease in Poland (2024)
Patients with Fabry disease in Poland constitute a relatively small group with specific medical needs. Due to the nature of their condition, they require comprehensive treatment and multidisciplinary care. So far, no extensive studies have been conducted in Poland focusing on the quality of life of this group, as well as their treatment preferences. Although patients with Fabry disease do not have full freedom in choosing therapy due to medical reasons, there are certainly areas where their personal needs and motivations should be taken into account. We wanted to collect data so that it could contribute to a discussion on how to improve the care system for patients with Fabry disease in Poland, enhancing their quality of life and making treatment more personalized and patient-friendly.
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The situation of patients with rare diseases from Ukraine who fled the war (2022)
Since the beginning of the war in Ukraine, we have been supporting Ukrainian patients with rare diseases. In order to understand their situation even better and adjust our humanitarian activities to their needs, in July 2022 we conducted a survey research in a group of about 30 Ukrainian patients and patient’s caregivers whom we helped and who are currently residing in various European countries. The report, which we have prepared on the basis of the collected responses, is available in Ukrainian and English.
You can read it by clicking on the covers below:
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The quality of life and treatment preferences of patients with primary immunodeficiencies in Poland (2020)
In 2020, we carried out further research among PID patients in Poland. The situation on the Polish plasma-derived medicines’ (PDMPs) market has changed significantly over the previous 5 years. Most importantly, adult patients with PID were included in the drug program. Moreover, new treatment options became available for both adult and pediatric patients; the availability of subcutaneous medicines also increased. Therefore, it was very important to repeat the research to observe the current situation of patients with PID, recognize their preferences, needs, expectations, what they think about specific treatment options and how their treatment affects their quality of life.
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Preferred types of treatment of patients with primary immunodeficiencies in Poland and the quality of life patients and their families (2015)
In 2015, we conducted a study focused on treatment preferences and quality of life of patients with primary immunodeficiencies in Poland. We analyzed the needs and preferences of adult patients but also of parents of pediatric patients. This knowledge helped to adjust the work of the patient advocacy group to patients’ expectations and – at the same time – it helped the medical community and industry to adjust treatment options to the patients’ needs. Posters showing results of the survey were presented in 2016 and 2017 at congresses of the European Society for Immunodeficiencies, being publications selected by the Medical Committee.
You can find the posters below:
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ESID Congress 2016 in Barcelona:
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ESID Congress 2017 in Edinburgh:
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