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ID 47727
file
title alternative
Is the progression of treatment for patients with hemophilia leading to improvements in school or social life?: A questionnaire survey for mothers of children or adolescents who chiefly receive prophylactic treatment for hemophilia.
creator
Koga, Ayaka
Sasaki, Shinobu
Inoue, Masami
subject
Hemophilia
prophylaxis
school or social life
abstract
【背景】血友病患者の治療は進歩した。そこで治療の進歩による患者の学校・社会生活の詳細を明らかにするために,母親を対象に,若年世代の患者の学校・社会生活,母親の困り事について実態調査した。
【方法】血友病患者の母親を対象に,無記名自記式の質問紙調査を実施した。
【結果】母親27人の回答が得られ,息子である患者は30人だった。定期輸注実施は23人で,そのうち家庭で輸注を行う者は22人だった。通園経験のある者は27人だった。全ての行事に参加させた者が18人だった。宿泊行事中の定期輸注の実施について,中学生までは学校に支援依頼していた。患者8人は自己注射し,高校生以降の患者4人は,自室で一人の時に注射をしたという回答だった。母親の困り事は「血管確保の失敗と焦り」だった。
【結論】治療の進歩は患者の学校・社会生活を改善した。しかし継続的治療を支える家族の負担のもとに成立する。今後必要な医療支援として,患者の宿泊行事中の輸注において,患者が安心して注射できる場所についての助言が示された。
abstract
Background: Hemostatic treatment for patients with hemophilia( PWH) has improved. The aim of this study was to clarify school status and social life among young boys with hemophilia, as well as their mothers’ frustrations.
Methods: A questionnaire survey was completed anonymously by mothers of hemophilic boys.
Results: A total of 27 mothers of 30 PWHs completed the survey. Twenty-three PWHs had received prophylactic treatment, and 22 received home infusion therapy. Twenty-seven PWHs had attended preschool, and 18 had participated in all preschool/school events. When factor concentrates needed to be infused during overnight events, many mothers requested the assistance of medical staff until the PWHs were junior high school students. When they were high school students, eight PWHs were able to infuse themselves. Four PWHs were reported to infuse alone, hiding from the public eye. Mothers’ chief source of frustration was“ infusion failure on busy mornings.”
Conclusion: This study indicates that the progress of treatment for PWHs may improve the school or social life of patients. However, these patients’ family support is also essential for the patients’ treatment. Medical support, such as advice about where to self-infuse during overnight events is needed for PWHs.
journal title
Medical journal of Hiroshima Universtiy
volume
Volume 66
issue
Issue 1-6
start page
1
end page
8
date of issued
2018-12
publisher
広島大学医学出版会
issn
0018-2087
ncid
language
jpn
nii type
Departmental Bulletin Paper
HU type
Departmental Bulletin Papers
DCMI type
text
format
application/pdf
text version
publisher
rights
Copyright (c) 2018 広島大学医学出版会
department
Graduate School of Biomedical & Health Sciences
University Medical Hospital
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