Awareness, Care, and Treatment In Obesity Management of Patients With Hemophilia (ACTION) to Inform Hemophilia Obesity Patient Empowerment (HOPE)
| Status: | Completed |
|---|---|
| Conditions: | Obesity Weight Loss, Hematology |
| Therapuetic Areas: | Endocrinology, Hematology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 9/7/2018 |
| Start Date: | December 1, 2017 |
| End Date: | April 29, 2018 |
An online web-based cross-sectional survey in which participants will complete a distinct
questionnaire for patients with hemophilia and obesity (PwHO) and/or their
carers/spouses/partners, or a distinct questionnaire for healthcare professionals. Each
questionnaire consists of more than 100 items including pre-coded (multiple choice)
closed-ended questions, yes/no questions and rating scales. It is estimated that this one-off
survey will take approximately 45-60 minutes to complete.
As a cross-sectional study, there will be no treatment of patients.
questionnaire for patients with hemophilia and obesity (PwHO) and/or their
carers/spouses/partners, or a distinct questionnaire for healthcare professionals. Each
questionnaire consists of more than 100 items including pre-coded (multiple choice)
closed-ended questions, yes/no questions and rating scales. It is estimated that this one-off
survey will take approximately 45-60 minutes to complete.
As a cross-sectional study, there will be no treatment of patients.
Inclusion Criteria:
- Meeting one of the following criteria: a) Adults (any gender) aged equal to or more
than 18 years with hemophilia (any severity, with or without inhibitors)
self-identified with obesity or overweight, - OR - Caregivers of children (any gender)
currently aged less than18 years with hemophilia (any severity, with or without
inhibitors) caregiver-identified with obesity or overweight, - OR - Spouses or
partners of adults (any gender) aged equal to or more than 18 years with hemophilia
(any severity, with or without inhibitors) self-identified with obesity or overweight
- OR - Healthcare professional (pediatric or adult hematologist, nurse, nurse
practitioner, physician assistant, physical therapist, social worker) actively working
in a federally designated hemophilia-treatment center for at least 3 years and with
experience managing patients with hemophilia and obesity or overweight.
- Participants must have access to the internet, either at home or at a location
convenient to them
- Provision of informed consent before the start of any survey-related activities.
Exclusion Criteria:
- Inability to understand and comply with written instructions in English
- Previous completion of this study with receipt of compensation
- Mental incapacity, unwillingness or language barriers precluding adequate
understanding or cooperation
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