Gajewski B, Sumera A, Kaczmarek R, Kucher A, Noone D, Page D, Skinner M.
PP-75 (1160578) Changing community needs for those with a bleeding disorder in Poland. (2022), Abstracts. Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537
Introduction
Treatment and care have improved for those with a bleeding disorder(BD) in Poland. There is a generation who is ageing and a younger population with adequate care, each requiring different services.
Methods
In early 2020, a fully anonymised survey on access to haemophilia centre services was developed and fielded on-line through the Polish haemophilia society. The PROBE questionnaire was included.
Results
284 people with a bleeding disorder, parents or caregivers (PwBD) responded to the survey (Figure). The mean distance from the PwBD home to a haemophilia centre was 56 (±61) kms and a comprehensive care centre (CCC) was 258 (±147) km. The mean reported appointment waiting time nationally was 1.7 (±2.9) months. In PwBD reporting home treatment, 94% report access at home. Of these, 41% receive home delivery. The national mean of the EQ-5D utility and PROBE score for PwBD was 0.748 (±0.219) and 0.730 (±0.135), respectively. The mean for those without a bleeding disorder in Poland in the full PROBE dataset was 0.882 (±0.219) and 0.845 (±0.104), respectively. The majority of PwBD indicate they would like clinics, nursing facilities and physiotherapy to be available through telemedicine in the future. Excluding those currently attending a CCC, 30% would prefer telemedicine be delivered through the CCC rather than their local centre.
Summary
There is a still a clear gap in quality of life between those with and without a BD in Poland. There is an increasing and changing need for services and care nationally which needs to be addressed for overall improvement of quality of life for PwBD in Poland.
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