Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years
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). Particip...
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doaj-eac1f6e79dca4a39bb3aceda6dcd3abf2020-11-24T23:27:17ZengFoundation for Rehabilitation InformationJournal of Rehabilitation Medicine1650-19771651-20812018-06-0150764365110.2340/16501977-23532431Self-reported activity of Swedish persons with haemophilia: Change over 2.5 yearsElisabeth Brodin0Emina HadzibajramovicFariba BaghaeiKatharina Stibrandt SunnerhagenÅsa Lundgren Nilsson Department of Clinical Neuroscience and Rehabilitation Medicine, Sahlgrenska Academy, University of Gothenburg, Institute of Neuroscience and Physiology, 413 45 Göteborg, Sweden. elisabeth.brodin@gu.se. 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. https://www.medicaljournals.se/jrm/content/html/10.2340/16501977-2353 haemophiliaactivityHaemophiliaActivityListlongitudinally. |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Elisabeth Brodin Emina Hadzibajramovic Fariba Baghaei Katharina Stibrandt Sunnerhagen Åsa Lundgren Nilsson |
spellingShingle |
Elisabeth Brodin Emina Hadzibajramovic Fariba Baghaei Katharina Stibrandt Sunnerhagen Åsa Lundgren Nilsson Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years Journal of Rehabilitation Medicine haemophilia activity HaemophiliaActivityList longitudinally. |
author_facet |
Elisabeth Brodin Emina Hadzibajramovic Fariba Baghaei Katharina Stibrandt Sunnerhagen Åsa Lundgren Nilsson |
author_sort |
Elisabeth Brodin |
title |
Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years |
title_short |
Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years |
title_full |
Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years |
title_fullStr |
Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years |
title_full_unstemmed |
Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years |
title_sort |
self-reported activity of swedish persons with haemophilia: change over 2.5 years |
publisher |
Foundation for Rehabilitation Information |
series |
Journal of Rehabilitation Medicine |
issn |
1650-1977 1651-2081 |
publishDate |
2018-06-01 |
description |
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. |
topic |
haemophilia activity HaemophiliaActivityList longitudinally. |
url |
https://www.medicaljournals.se/jrm/content/html/10.2340/16501977-2353
|
work_keys_str_mv |
AT elisabethbrodin selfreportedactivityofswedishpersonswithhaemophiliachangeover25years AT eminahadzibajramovic selfreportedactivityofswedishpersonswithhaemophiliachangeover25years AT faribabaghaei selfreportedactivityofswedishpersonswithhaemophiliachangeover25years AT katharinastibrandtsunnerhagen selfreportedactivityofswedishpersonswithhaemophiliachangeover25years AT asalundgrennilsson selfreportedactivityofswedishpersonswithhaemophiliachangeover25years |
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1725552571732459520 |