Awareness, Care, and Treatment In Obesity Management of Patients With Hemophilia (ACTION) to Inform Hemophilia Obesity Patient Empowerment (HOPE)

Study Overview
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Brief Summary
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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.

Official Title
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Awareness, Care, and Treatment In Obesity Management of Patients With Hemophilia (ACTION) to Inform Hemophilia Obesity Patient Empowerment (HOPE)

Conditions
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Haemophilia A, Haemophilia B, Obesity

Intervention / Treatment
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* Other: No treatment given


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Adults with hemophilia and obesity/overweight<br>Adults (any gender) aged ≥18 years with hemophilia (any severity, with or without inhibitors) self-identified with obesity or overweight | Other: No treatment given<br>* No treatment given<br>|
| Caregivers identified with obesity/overweight<br>Caregivers of children (any gender) currently aged <18 years with hemophilia (any severity, with or without inhibitors) caregiver-identified with obesity or overweight | Other: No treatment given<br>* No treatment given<br>|
| Spouses or partners self-identified with obesity/overweight<br>Spouses or partners of adults (any gender) aged ≥18 years with hemophilia (any severity, with or without inhibitors) self-identified with obesity or overweight | Other: No treatment given<br>* No treatment given<br>|
| Healthcare profs. managing hemophilia and obesity/overweight<br>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. | Other: No treatment given<br>* No treatment given<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Prevalence of obesity awareness and perceptions | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Prevalence of attitudes on obesity | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Prevalence of weight loss support structure | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Prevalence of interactions between patients and HCPs around obesity/overweight | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Prevalence of awareness about weight loss solutions | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Characteristics of obesity awareness and perceptions | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Characteristics of attitudes on obesity | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Characteristics of weight loss support structure | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Characteristics of interactions between patients and HCPs around obesity/overweight | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 | 
| Characteristics of awareness about weight loss solutions | Data is collected via online questionnaires | Start of interviews day 1 until end of data collection day 90 |