The lived experience of people with Glanzmann's thrombasthenia

Not Applicable

Completed

• Conditions: Glanzmann's thrombasthenia; Haematological Disorders; Qualitative platelet defects

• Registration Number: ISRCTN63686338
• Lead Sponsor: Haemnet

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2022-04-07
• Study Completion: 2023-05-01
• Last Update Posted: 2 September 2024

Recruitment & Eligibility

• Status: Completed
• Sex: All
• Target Recruitment: 104

Inclusion Criteria

1. Confirmed diagnosis of inherited Glanzmann's thrombasthenia
2. Adults aged >16 years
3. Parents of children aged <16 years
4. Ability to read/write/speak English for questionnaire and interview completion
5. Give informed consent

Exclusion Criteria

1. Acquired Glanzmann's thrombasthenia
2. Participants unable to read/write/speak English
3. Those who do not consent

Study & Design

• Study Type: Observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
The impact of Glanzmann's thrombasthenia on affected individuals and their families, measured using an array of validated questionnaires (EQ5D, Minnesota Importance Questionnaire [MIQ], Patient Health Questionnaire-9 [PHQ9], Patient-Reported Outcomes Measurement Information System [PROMIS], Rosenberg's self-efficacy scale) via an online survey at baseline

Secondary Outcome Measures

Name	Time	Method
1. Satisfaction with current treatments and management approaches<br>2. Identification of areas of unmet need among people with Glanzmann's thrombasthenia<br><br>Both will be measured using one in depth (up to 1-hour duration) qualitative interview per participant at the end of the study