An Institutional Pilot Study to Investigate Physical Activity Patterns in Boys With Hemophilia
Condition: Hemophilia A; Hemophilia B; Factor VIII Deficiency; Factor IX Deficiency
MeSH terms: Hemophilia A; Hemophilia B
Study type: Observational [Patient Registry]

Summary: 
      This pilot project was developed to investigate subjective and objective data related to the
      patterns of physical activity participation among hemophilia patients (FVIII or FIX) between
      the ages of 5 and 18 years. Physical activity participation among different levels of disease
      severity will be compared using accelerometers to calculate the amount of time spent in
      moderate to vigorous physical activity (MVPA) and the number of bouts of MVPA; additionally,
      data will be collected from two validated questionnaires (PedHAL and 3 day physical activity
      recall). Current literature that relates level of physical activity to disease severity in
      the pediatric hemophilia population is limited. The information gained about the type and
      quantity of physical activity participation in children with varying levels of hemophilia
      will assist in the development of education and interventions to promote good physical
      activity and potentially examine the role of tailored prophylaxis.
    

Detailed description: 
      Objectives:

        1. To determine if the amount of time spent performing moderate to vigorous physical
           activity (MVPA) and the number of bouts of MVPA engaged in on a weekly basis differs by
           the level of disease severity in the pediatric hemophilia population.

        2. To determine if recorded physical activities and intensity of activities from
           self-report questionnaires (PedHAL and 3 day physical activity recall - 3DPAR) differ
           according to the severity of hemophilia.

        3. To determine if, among patients with hemophilia, there is a relationship between
           physical activity level and patient age, weight, and body mass index (BMI).

      Specific Aims:

      •Aim # 1: The primary aim of the study is to determine if there are differences in the amount
      of time spent in MVPA by level of disease severity of children with hemophilia.

      Secondary Aims:

        -  Aim # 2: To determine if there are meaningful differences in the accumulation of MVPA
           (bouts of exercise) by disease severity of children with hemophilia.

        -  Aim # 3: The compare the findings from Aim #1 and #2 to the NHANES (National Health and
           Nutrition Examination Survey) data, recognizing that this survey provides a comparative
           healthy normal cohort.

        -  Aim # 4: To investigate MVPA with these data collected from the PedHAL (11) and the
           3DPAR (12) by disease severity of children with hemophilia.

        -  Aim # 5: The review and determine the relationship between physical activity
           participation and timing of prophylaxis factor replacement and whether participation is
           limited to days of factor infusion.

        -  Aim #6: To investigate the amount of physical activity and how it relates to age,
           weight, and patient body mass index (BMI).
    

Intervention name(s): Accelerometer
Intervention type(s): Device
Other intervention name(s): ActiLife; Kinesoft
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Patients will be 5 to 18 years of age with a diagnosis of hemophilia with no history of
        inhibitors or pre-existing co-morbidity (e.g. cerebral palsy, chronic respiratory
        conditions, congenital heart defects) that can affect activity participation.
      
Keywords: Physical Activity; Accelerometer; Exercise; Obesity; BMI