Article Text

  1. E. M. Hirsch1,
  2. S. Konzal2,
  3. J. Donkin2,
  4. J. Holtz2,
  5. R. Lopez2,
  6. K. McGinty2,
  7. R. Miller2,
  8. W. Y. Wong2
  1. 1Keck School of Medicine of USC, Los Angeles, CA
  2. 2Childrens Hospital Los Angeles


Purpose: Modern prophylaxis regimens and home factor infusion have enabled hemophiliacs to be more physically active. Our study examines the attitudes of doctors, nurses, physical therapists, social workers, and patients' families towards hemophiliacs' participation in a variety of physical activities. Methods: An anonymous survey was distributed to a group of doctors, nurses, social workers, and physical therapists and also to a group of patients/parents at a meeting of hemophilia treatment centers. The survey consisted of four case studies followed by questions that measured attitudes towards diverse subjects. Results: Overall, the healthcare professionals are in agreement as to the limitations and support of activities. Neither having hemophilia nor the presence of an inhibitor should totally exclude a patient from participating in certain sports. These results are in accordance with the results of a World Federation of Hemophilia survey that examined physician's attitudes towards hemophilia and exercise. The responses of families mirror those of healthcare professionals with the exception that families are more permissive towards a greater variety of sports, but halt activities sooner and are less likely to increase prophylaxis frequency after increased bleeds. Also, the patients' families reported balancing the clinical recommendations with other parental priorities when making their decisions about their children's activities. This was done with the goal of establishing “normalcy” within the familial environment. Disagreements exist among healthcare professionals with respect to subject management for each activity. The differences range from disagreement over prophylaxis administration to the level of consideration that should be given to psychosocial factors such as the concerns of patient's families. Conclusions: These differences most likely reflect the inherent “biases” that arise as a result of the provider's varied training, although support is present for most activities. These findings underscore the necessity of having a multi-disciplinary care team that includes the input of the family so that all of the diverse ideas/viewpoints are represented. In addition, the decision to participate in physical activity as well as the degree of involvement must be individualized for each boy with hemophilia in order to maximize each individual's potential in academic and physical achievement. This survey shows the importance of collective support from healthcare providers of various disciplines as well as the patients' families in encouraging hemophiliacs' participation in sports and activities and managing their care.

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