A survey of the outcome of prophylaxis, on‐demand treatment or combined treatment in 18–35‐year old men with severe haemophilia in six countries

Noone, Declan; O’Mahony, Brian; Dijk, van Jitse; Prihodová, Lucia

doi:10.1111/j.1365-2516.2012.02934.x

Cited by 50 publications

(86 citation statements)

References 17 publications

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“…By facilitating timely treatment of a bleed, SI helps to preserve independence [18]. The increasing use of adult prophylactic regimens in developed countries adds to the need for SI skills [19]. We noted that SI use did not peak until 29–30 years among all severities, indicating that older teens and young adults may benefit from additional training.…”

Section: Discussionmentioning

confidence: 98%

Association of overweight and obesity with the use of self and home‐based infusion therapy among haemophilic men

et al. 2013

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Summary An elevated body mass index (BMI) may make venipuncture more difficult, potentially impacting the use of home infusion (HI) and self-infusion (SI). We sought to determine whether above-normal BMI is associated with decreased use of HI treatment and SI of clotting factor concentrate among haemophilic persons. We analysed data from 10 814 male patients with haemophilia A and B (45% with severe disease) aged 6–79 years enrolled in the Centers for Disease Control and Prevention Universal Data Collection surveillance project between 1998 and 2008. Associations between the use of HI and SI and BMI were evaluated using logistic regression. Fifty per cent of haemophilic men were overweight or obese, similar to rates reported among the general US population by the 2007–2008 National Health and Nutrition Examination Survey [Flegal, KM et al., JAMA 2010;303:235–241;]. Twenty per cent of children and 22% of teens were obese, as were 28% of adults [Ogden, CL et al., JAMA 2010;303:235, 242]. Overall, 70% of the study sample used HI; 44% of those who used HI also used SI. Overweight and obese men were each less likely to use HI than those of normal weight [odds ratio (OR) 0.8; 95% confidence interval (CI) 0.7–1.0 and OR 0.7; 95% CI 0.6–0.8 respectively]. Obese teens and adult men were also less likely to practice SI than teens and adults of normal weight (OR 0.8; 95% CI 0.7–0.9 for each). We conclude that overweight and obese haemophilic men are less likely to use HI and obese men are less likely to use SI than their normal-weight counterparts.

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Section: Discussionmentioning

confidence: 98%

Association of overweight and obesity with the use of self and home‐based infusion therapy among haemophilic men

et al. 2013

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“…Only the study by Steen Carlsson et al [34]. From a patient perspective, most data suggest that prophylaxis is associated with a considerable increase in quality of life [38]. All studies reported that prophylaxis was associated with a significant reduction of bleeding.…”

Section: Prophylaxis Versus On-demand Therapy: Issues Of Cost-effectimentioning

confidence: 99%

Prophylaxis

Fischer

Berg

2014

Textbook of Hemophilia

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“…Observational studies support that prophylactic treatment reduces mobility problems, pain and discomfort, and the need for assistance; it is also associated with higher productivity and a better QOL [11-13]. PWH receiving prophylactic treatment from early childhood have better outcomes than those who are initially treated on demand and only subsequently switch to prophylactic treatment [6, 12, 14-16]. …”

Section: Introductionmentioning

confidence: 99%

“…While a consensus exists regarding the benefits of prophylactic treatment in childhood, the optimal treatment strategy and dosage is still under debate, in particular for adult PWH [6, 12, 17]. There are different national strategies: high-dose prophylaxis (e.g., in Sweden), intermediate-dose prophylaxis (e.g., in The Netherlands), and on-demand treatment (e.g., in Russia) [13, 18].…”

Section: Introductionmentioning

confidence: 99%

Joint Mobility and Physical Function of Danish Hemophilia Patients: A Three-Wave Panel Study Spanning 24 Years

et al. 2018

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Background: The positive effects of factor treatment of hemophilia are well established, but the long-term outcomes are not well documented. This panel study evaluated changes in bleeding frequency, joint mobility, physical function, and symptoms in Danish patients with moderate to severe hemophilia A or B over 24 years. Methods: Three anonymous surveys were conducted in 1988, 2001, and 2012 targeting Danish patients with moderate to severe hemophilia, and the study participants, respectively, were 128, 156, and 164 male patients with hemophilia (PWH). The number of bleeding episodes, the use of factor concentrate, comorbidities, joint mobility, physical function, and symptoms were evaluated by means of self-reporting. Trends over time were analyzed using ordinal and multinomial logistic-regression models controlling for age group. Results: The proportion of PWH in the oldest age group (55–88 years) increased from 4% in 1988 to 18% in 2012. In 1988, a high risk of bleeding episodes was primarily found in the age group of 16–34 years. In 2012, a high risk was primarily found in the age group of 35–54 years. Joint mobility and physical function increased significantly from 1988 to 2012 but showed a noticeable decrement in the older age groups, even in 2012. Pain in the extremities, anxiety, and depression decreased significantly, but back pain increased. No significant changes were found for 7 other symptoms. Conclusions: Significant improvements in joint mobility and physical function have occurred over the last 24 years, but PWH > 35 years still experience a decline in these areas with age. This decline underscores the importance of life-long treatment and continuous rehabilitation of PWH.

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A survey of the outcome of prophylaxis, on‐demand treatment or combined treatment in 18–35‐year old men with severe haemophilia in six countries

Cited by 50 publications

References 17 publications

Association of overweight and obesity with the use of self and home‐based infusion therapy among haemophilic men

Association of overweight and obesity with the use of self and home‐based infusion therapy among haemophilic men

Prophylaxis

Joint Mobility and Physical Function of Danish Hemophilia Patients: A Three-Wave Panel Study Spanning 24 Years

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