According to a recent survey of patients, caregivers, and healthcare providers, symptoms of pain, anxiety, and depression in people with hemophilia generally increased with disease severity and were also associated with a reduced quality of life.
While many of those surveyed felt their pain was adequately managed in the clinic, fewer felt their anxiety and depression were well managed.
“Pain and depression/anxiety occur more frequently with increasing severity of hemophilia, with adverse effects on health-related quality of life. [People with hemophilia] with depression/anxiety or untreated pain may benefit from improved treatment strategies,” the researchers wrote.
The study, “Pain, depression and anxiety in people with hemophilia from three Nordic countries: cross-sectional survey data from the MIND study‘ was published in the magazine Hemophilia.
Hemophilia is a disorder characterized by ineffective blood clotting and excessive bleeding. This bleeding sometimes occurs internally and causes painful swelling in the joints.
This pain can negatively impact the health-related quality of life in patients with hemophilia, in whom depression and anxiety are prevalent.
MIND (NCT03276130) was a two-part study aimed at understanding management of health-related limitations in quality of life in people with hemophilia. In the second part of the study, surveys were used to assess patient, caregiver and healthcare provider perspectives on managing pain, depression and anxiety among people treated in hemophilia treatment centers in Sweden, Denmark and Finland.
A total of 343 adult patients completed the survey, including 264 with hemophilia A and 79 with hemophilia B. 71 responses were received from caregivers, most (80%) of whom cared for children with hemophilia A.
Severe haemophilia was reported in 180 (53%) adults and 39 (55%) children, while moderate disease was reported in 53 (16%) adults and 17 (24%) children. Mild haemophilia was reported in 103 (30%) adults and 15 (21%) children.
About half of adults with hemophilia (50%) and caregivers (46%) reported that their own or their child’s hemophilia had caused pain in the past six months. Most adults who reported pain reported experiencing it at least once a week, while children typically experienced pain less than once a week.
Of those suffering from pain, 36% of adults and 17% of children had used treatment for it in the previous two weeks.
In general, reports of pain and use of treatments were associated with disease severity, with patients reporting greater disease severity also being those reporting more pain and taking medication to treat it. However, more people with mild hemophilia said they felt the need for treatment but had not sought it.
Depression or anxiety due to hemophilia was reported in 28% of people, which was more common in those with severe or moderate disease. In the previous six months, 15% of people reporting these symptoms had sought treatment or counseling, and another 13% said they felt the need for it. Few children (less than 7%) had sought treatment or counseling, but 13% of carers felt their child needed it.
Of all people who have ever had pain, 62% felt their pain was adequately managed by their healthcare providers, while 24% of people said their depression or anxiety was adequately managed.
Among five health teams from hemophilia treatment centers surveyed, four providers agreed that their patients’ pain was being adequately managed, while two providers felt that anxiety and depression were adequately managed.
Overall, most patients and caregivers felt that they or their child were coping well with hemophilia and that their current treatment allowed them to function normally at work or school, but some people reported an impact on social life and leisure activities. These effects were significantly greater in patients with severe haemophilia.
Health-related quality of life, measured with the EuroQol 5-Dimension-Test (EQ-5D), was significantly reduced with increasing disease severity.
In general, the study results indicate that “symptoms became more common with increasing severity of hemophilia and may contribute to the reported adverse impact on quality of life,” the researchers wrote, adding that the “responses indicated this.” [people with hemophilia]supervisor and [hemophilia treatment centers] was generally of the opinion that the treatment of pain associated with hemophilia has been satisfactory, but depression and anxiety may not be treated as satisfactorily in clinical practice.”
Given the possibility that greater anxiety or depression can lead to lower adherence to hemophilia treatment, leading to worsening of disease symptoms, it is important to adequately address these issues, the researchers emphasized.
“This supports the need for improved guidelines with a more proactive and structured approach to identifying and treating symptoms of depression and anxiety, including counseling and individualized interventions,” they wrote, adding that for hemophilia patients, “this may lead to improvements in their Life quality.”