At the WFH 2016 World Congress this week, lots of data is being presented showing how active and fit people living with hemophilia can be - thanks to modern technology, proper disease management, and good caregiving. Data presented included results from the “B-HERO’ study, patient using fitbits, and - believe it or not - the New York City Marathon.
Last year, 8 hemophilia patients did the New York City Marathon.1
Eight patients with different characteristics in hemophilia, orthopedic and surgical histories performed a training program lasting 10 months to run the New York City Marathon on November 1st 2015. The primary goal was to prove the impact of endurance training on different outcomes: orthopedic, hematological and psychological aspects. All 8 patients were evaluated every 3 months to monitor and assess the outcome, including orthopedic evaluations and diagnostic exams.
All patients were diagnosed with hemophilia A – 4 severe, 2 moderate, and 2 mild.
All runners completed the training program and arrived to the finish line.
During training period one severe complication of femur stress fracture happened in a patient with osteopenia; no complications as hemarthrosis or others related to hemophilia were observed.
As the authors of this study noted, “Today prophylaxis with deficient clotting factor (FVIII or FIX) and orthopedic management are improving their quality of life (QoL) with higher functional requests, enabling patients with hemophilia to practice also extreme sports with life style expectancy closer to general population.”
Patients with Fitbits
Of course, not all patients are able, let alone willing, to run a marathon. However, it is of value to know how active patients with hemophilia are on a daily basis. An interesting study out of Spain measured daily activity using fitbits worn by hemophilia patients.2
The objective of this was to quantify the amount of daily physical activity performed by adults with hemophilic arthropathy in prophylaxis treatment. Twenty adult hemophilic patients from the Hemostasis and Thrombosis Unit of the Hospital La Fe, Valencia, Spain were recruited. The Fitbit Charge HR activity wristband was worn all day and used to quantify the amount and level of daily physical activity of the patients. Fitbit bands help show the steps, covered distance, heart rate and calories in the person wearing it.
The study found that patients being able to walk about 10,000 steps a day and perform 424 minutes of moderate-intensity activity a week without risk of bleeding.
The B-HERO studies were designed to understand the psychosocial impact of hemophilia on the patients, be there children or adults.3,4
For children with hemophilia, caregivers were asked to assess the impact various activities had on the children’s lives. Overall, 90% reported a negative impact on engagement in recreational activities. The activities they did allow them to participate in were walking, swimming, and jogging. 37% of the caregivers gave additional doses of medication before the activity.
The top 2 activities that patients were no longer allowed to engage in were basketball and soccer. The survey also asked which sports were most desired by patients diagnosed with hemophilia which ended up being basketball, football, soccer, tennis and skateboarding.
In the older patients surveyed, 98% reported a negative impact on engagement in recreational activities. A higher proportion of the respondents made moderate changes to time of dose, majority added dosing pre-activity. The top recorded activities for the adult patients walking, dancing, fishing, bicycling, gardening and swimming.
The most desired activities they were unable to participate in due to hemophilia were basketball, football, skiing, soccer and surfing.
Solimeno L, Bestetti D, Danesi I, et al. New York City Marathon: a challenge for hemophilic patient. Poster presented at the WHF 2016 World Congress; Orlando FL; July 24-28, 2016
Erez-Alenda SP, Carrasco JJ, Casana J, et al. Physical Activity in adult patient with haemophilic arthropathy monitored by Fitbit Charge HR. Poster presented at the WHF 2016 World Congress; Orlando FL; July 24-28, 2016
Hernandez G, Baumann K, Guelcher C, et al. Understanding the Impact of Hemophilia B on Activity of US Children with Hemophilia (CWH) from their Caregivers: The Bridging Hemophilia Experiences Results and Opportunities into Solutions (B-HERO-S Study). Poster presented at the WHF 2016 World Congress; Orlando FL; July 24-28, 2016
Baumann K, Hernandez G, Witkop M, et al. Impact of mild to severe hemophilia on engagement in recreational activities by US adult men and women with hemophilia B: the bridging hemophilia B experiences results and opportunities into solutions (BHERO-S) study. Poster presented at the WHF 2016 World Congress; Orlando FL; July 24-28, 2016