Persons With Hemophilia of Generation Y and Their Relatives Attitudes and Expectations From Treatment.
Clin Appl Thromb Hemost
; 27: 10760296211000131, 2021.
Article
em En
| MEDLINE
| ID: mdl-33733886
ABSTRACT
This multicenter cohort study aimed to determine the attitudes and expectations of persons with hemophilia of Generation Y (PwH-Y) toward hemophilia and its treatment comparatively with the opinions of their non-hemophiliac relatives. The study was representative regarding quota-control variables of hemophiliacs registered to the provincial representatives of the Hemophilia Society of Turkey in 4 geographic regions and Istanbul. Sixty-four PwH-Y (62 males) and their 56 first-degree relatives (17 males; Generation X/baby boomers) were interviewed face-to-face using mixed data collection method. "Focus Group Study" method was used for qualitative data. Treatment adherence, requirements, and social activities were questioned with a semi-structured form. Treatment adherence rate of the PwH-Y (46.2%) was lower than that perceived by their relatives (71.4%) (p ≤ 0.05). Vascular access problems were the most common reasons for non-adherence (60% in PwH-Y and 25% in relatives). Among the components the hemophiliacs and their relatives needed most, support for accessibility of drugs/treatment ranked first (41.1% and 45%, respectively), followed by emotional support (26.1% and 32.5%, respectively). For increasing treatment success in PwH-Y, treatment should be personalized and shaped based on personal requirements.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Hemofilia A
Tipo de estudo:
Clinical_trials
/
Observational_studies
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Qualitative_research
Limite:
Adolescent
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Adult
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Aged
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Female
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Humans
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Male
/
Middle aged
Idioma:
En
Revista:
Clin Appl Thromb Hemost
Assunto da revista:
ANGIOLOGIA
Ano de publicação:
2021
Tipo de documento:
Article
País de afiliação:
Turquia