To understand the lived experiences of people with Glanzmanns Thrombasthenia
A qualitative study of people with Glanzmanns Thrombasthenia including an on-line survey, qualitative in-depth interviews and bleed diary completion.
Study Type
OBSERVATIONAL
Enrollment
122
qualitative assessment
Oxford University Hospitals NHS Foundation Trust
Oxford, Oxfordshire, United Kingdom
to understand the impact of GT on quality of life of affected individuals and their families.
Incidence of reported impact of GT on daily life using validated questionnaires EQ5D, MIQ, PHQ9, Rosenbergs self esteem scale.
Time frame: one year
Identify levels of acceptability of current treatments and management approaches
Rate of reported satisfaction with current treatments using self efficacy to manage disease assessment tool
Time frame: one year
Identify areas of unmet need among people with GT
Rate of reported unmet need using ED5D and MIQ
Time frame: one year
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