Psychological complications among patients with congenital bleeding disorders

Abstract

Congenital bleeding disorders (CBDs), including inherited platelet function disorders and rare and common bleeding disorders, are a heterogeneous group of bleeding disorders with a wide range of clinical presentations, including psychological complications. Due to the chronic nature of CBDs, psychological complications are relatively common in these patients, which can affect treatment adherence, quality of life, and even the frequency of bleeding episodes. Chronic pain causes many psychological problems in CBDs, disrupting their social interactions, affecting all aspects of their lives, including their emotional functioning and behavior, and eventually leading to social exclusion. About one-third of patients with severe hemophilia A suffer from anxiety, 64% from depression, and 60% from other minor psychological complications such as withdrawal/depression, anxiety/depression, attention problems, and emotional problems. Anxiety, depression, and uncontrolled pain interfere with treatment adherence. For this reason, psychological interventions are needed in people with CBDs. Psychological interventions increase quality of life and treatment adherence. Therefore, early recognition of psychological complications in CBD patients may increase treatment adherence, leading to a reduction in bleeding episodes and thus an improvement in quality of life.

Prevalence and perceptions of pain in people with haemophilia: A UK study

“…Ineffective analgesic use fosters the inappropriate use of clotting factors to treat pain, 28 as well as use of substances such as cannabis 29 (illegal in the UK) or alcohol, a practice that is largely unacknowledged clinically. Ineffective pain management strategies are an opportunity for clinicians to improve haemophilia care and outcomes through improved questioning, analgesia use and importantly use of other therapies such as physiotherapy 30 exercise 31,32 and psychological support 33 …”

Psychological Burden Among Patients With Inherited Bleeding Disorders in Madinah Province, Saudi Arabia

“…Depression affects approximately 350 million people globally and is projected to become the second leading cause of debilitating illness by 2030 [6]. Patients with inherited bleeding disorders often experience psychological disturbances, influencing their treatment adherence [7]. We sought to gauge the prevalence and associated risk factors of psychological burdens, specifically depression, anxiety, and stress (DAS), in patients with inherited bleeding disorders attending hematology clinics in Madinah Province, Saudi Arabia.…”

“…Recent research corroborates these high prevalence rates. A cross-sectional study noted that 33% of patients with congenital bleeding disorders experienced anxiety, 64% depression, and 60% other minor psychological complications [7,8]. An analysis of 77 patients from seven USA hemophilia treatment centers diagnosed with VWD -the most prevalent inherited bleeding disorder -revealed depression and anxiety rates of 63.6% and 58.3%, respectively [9].…”

The good, the bad and the ugly of pain in haemophilia: Recent evidence on the epidemiology, molecular mechanisms and knowledge gaps preventing optimal treatment

“…44 Another study summarised that about one-third of patients with severe haemophilia A suffer from anxiety, 64% from depression and 60% from other minor psychological complications. 45 Poor HRQoL has been highlighted in PWH with ankle haemarthropathy in the United Kingdom. 46 A survey including more than 3000 PWH in an 11-year Nordic registry study highlighted that both paediatric and adult PWH used more medications for pain, depression and anxiety compared with a control-matched population, regardless of age, sex or FRT consumption.…”

“…Indeed, higher depression scores were observed in a cohort of 100 adult PWH compared to patients without haemophilia 44 . Another study summarised that about one‐third of patients with severe haemophilia A suffer from anxiety, 64% from depression and 60% from other minor psychological complications 45 . Poor HRQoL has been highlighted in PWH with ankle haemarthropathy in the United Kingdom 46 .…”