Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years
Elisabeth Brodin, Emina Hadzibajramovic, Fariba Baghaei, Katharina Stibrant Sunnerhagen, Åsa Lundgren-Nilsson
nstitute of Neuroscience, Section for Clinical Neuroscience and Rehabilitation, The Sahlgrenska Academy, University of Gothenburg, 413 45 Göteborg, Sweden. E-mail: firstname.lastname@example.org
Objectives: To describe self-reported activity using the Haemophilia Activity List (HAL) for Swedish adults with haemophilia and to detect any changes over time.
Method: The HAL was sent to the adult population with haemophilia A and B, moderate and severe form, living in Sweden (n = 260). Participants completed the HAL and a questionnaire on sociodemographic and medical information. From a previous study cohort, 61 persons had responded twice to the HAL. The investigated group was divided into early and later treatment onset groups with regard to access to medication.
Results: The response rate was 50%. There was a significant difference (p < 0.001) between the early and later treatment groups in all domains in HAL. When analysing HAL “question by question” from the 2 reported time-points, the most prominent outcome was that the reported ability in activities was stable over time at the group level, except for participants who had no access to the clotting factor early in life. They reported greater limitations in some of the activities in the challenging domain “leisure activities and sport”.
Conclusion: The early treatment group reported a significantly better ability in all activities compared with the late treatment group.
Compared with the very recent past, persons with haemophilia currently living in Sweden have the opportunity to have prophylactic treatment to avoid frequent bleeding episodes in their joints and muscles. This makes it easier to live an active life. Using a questionnaire on self-reported activity, younger adults reported fewer difficulties than older persons. Over time the older persons reported increased difficulties in some of the more complex activities, such as playing games, sports, and going on active holidays. One reason could be that the older persons had no medical treatment when they were young so they had arthropathy due to bleeding in their childhood, perhaps combined with problems due to ageing. It is important to capture the person’s own perspective of their abilities at their annual check-up.
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