WFH 2024 – PROBE and Slovenia PosterKucher A, Clearfield E, Kavčič M, Urbančič M, Živić Kavčič M and Skinner M. Summary data from the first collaboration of PROBE and Drustvo Hemofilikov Slovenije (DHS) – an ongoing quality of life study. (2024), POSTER ABSTRACT (PP-162). (2024), Issue Information. Haemophilia, 30: 1-2. https://doi.org/10.1111/hae.15016
Introduction
Drustvo Hemofilikov Slovenije (DHS) and the Patient Reported Outcomes Burdens and Experiences (PROBE) study have initiated a collaboration to discover the quality of life (QoL) for people with hemophilia (PWH) in Slovenia.
Methods
Data was collected using PROBE’s web-based questionnaire. PROBE collects data in four categories: personal demographics, general health problems, hemophilia-specific health problems, and the Euro-QoL 5 dimensions 5 levels (EQ-5D-5L). Summary descriptive statistics are provided.
Results
Twenty-four PWH A and B participated (Table 1); 91.7% (n=22) were PWHA. The average age (SD) was 44.3 (18.4) years. Most participants had severe hemophilia 62.5% (n=15), moderate and mild hemophilia were reported by 16.7% (n=4) and 20.8% (n=5), respectively. Nineteen (79.2%) reported access to prophylaxis treatment, and two (8.3%) reported using on-demand treatment. One person reported that treatment was not available. In the family section, 58.3% (n=14) reported being married/in a long-term relationship and 54.2% (n=13) have children. Frequency of use of pain medication was low: 45.8% (n=11) reported using it “rarely” (1-5% of the time), and 25% (n=6) selected that they did not use any pain medication. The presence of acute pain and chronic pain was reported by 50% (n=12) and 70.8% (n=17), respectively. Fifty percent (n=12) indicated their chronic pain is due to target joint/s. Seventeen people (70.8%) indicated they had a target joint. PROBE and EQ-5D-5L scores range from 0 to 1, with a score closer to 1 meaning better QoL. Mean (SD) scores for PROBE and EQ-5D-5L were 0.803 (0.16) and 0.841 (0.14), respectively.
Conclusions
Collaboration between DHS and PROBE launched recently, with a goal to administer PROBE to at least half of the severe and moderate population of PWH in Slovenia. These data from the first set of participants shows the impact and importance of QoL data collection for the patient organization. PROBE can be used to measure access to the treatment, one of the most valuable indications of positive impact on QoL for PWH. PROBE also measures other key outcomes affecting QoL for PWH. Data collection is ongoing, and further analyses will be completed to understand the impact of living with hemophilia in Slovenia.
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