Although obese people with hemophilia — as well as their spouses and caregivers — are aware of the risks of excessive weight, fewer than half are actively taking steps to lose weight, a new study shows.
Better support and education about weight management would be beneficial for those patients, the findings suggest.
The study, “Awareness, Care and Treatment In Obesity maNagement to inform Haemophilia Obesity Patient Empowerment (ACTION‐TO‐HOPE): Results of a survey of US patients with haemophilia and obesity (PwHO) and their partners and caregivers,” was published in the journal Haemophilia.
The prevalence of obesity in people with hemophilia is similar to that of the general U.S. population.
Data on bleeding rates with regards to obesity in hemophilia are largely inconclusive. However, some studies have shown that patients experience reduced joint bleeds following moderate weight loss.
A prior large study, Awareness, Care and Treatment In Obesity MaNagement (ACTION), reported that only 23% of hemophilia patients with obesity achieved a weight loss more than 10% over three years. In contrast to evidence-based recommendations that include lifestyle changes such as reducing caloric intake and weight-loss medicines, patients and healthcare professionals said they most often used strategies such as eating less and being more active.
Importantly, healthcare providers suggested that hemophilia-specific concerns — such as bleed-related risks with increased physical activity or pain exacerbated by activity — can limit the applicability of ACTION’s recommendations.
As such, further insights are needed to provide effective care and weight management for people with hemophilia and obesity.
The ACTION-TO-HOPE study — Awareness, Care and Treatment In Obesity maNagement of Patients With Haemophilia to inform Haemophilia Obesity Patient Empowerment — was designed to identify insights on the specific challenges faced by these patients and barriers to successful weight management.
Forty-five spouses/partners, and 42 caregivers of adolescent patients also took part in ACTION-TO-HOPE. Participants completed an online survey from December 2017 to April 2018.
According to their body mass index (BMI), most adults were either overweight (43%) or obese (51%). Their primary goals were to improve health (60%), have more energy (54%), reduce the risks of being overweight (46%), and to lose weight (44%).
Issues related to joint health, such as pain, bleeding and movement, were secondary priorities, but still frequently mentioned by spouses/parents.
Most patients and spouses or partners perceived weight loss as a high priority, and one that was their complete responsibility. However, 63% of patients also recognized that they required a complete lifestyle change.
The majority of people with hemophilia anticipated that weight loss would reduce joint pain (62%), bleeding (58%), recombinant therapy use (52%), and also improve mobility (62%).
Most patients (65%) perceived obesity as a disease and viewed a 10% weight loss as extremely helpful (78%). Over the prior five years, 80% of patients discussed being overweight and 68% talked about losing weight with their healthcare providers. Yet, only a minority said they were successful (9%) or somewhat successful (38%) in losing weight.
Discussions with healthcare providers focused on improving health (46%), losing weight (44%), becoming more active (73%) and improving eating habits (72%). Still, fewer than half the participants — including patients, spouses/partners and caregivers — said they were somewhat successful in carrying out efforts to achieve weight loss.
Approximately half the patients believe that setting more realistic or specific goals can help them weigh less. Resources to support these goals (46%), referrals to weight-loss programs (41%) or dietitians (38%) also may help.
“Most [patients] have tried general approaches to improve eating and increase activity with little success and desire more education on weight management and more details on specific actionable recommendations distributed through existing haemophilia channels,” the researchers wrote.
“These insights will better inform the creation of weight-loss programmes for this community,” they added.
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