While it is well understood that individuals with von Willebrand disease (VWD) will experience a variety bleeding episodes throughout their lifetime, the psychosocial impact of these symptoms has received relatively little inquiry. Greater knowledge of these impacts could help inform and support potential mental health screening efforts for VWD patients at U.S. hemophilia treatment centers (HTCs).
To help fill this gap a group of researchers from several HTCs across the country sought to estimate rates of symptomatic depression and anxiety among individuals with VWD.
Investigators used specific validated measures to evaluate the sociodemographic and clinical characteristics associated with depression and anxiety. They employed two patient questionnaires – one focused on depression and another on generalized anxiety disorder – to collect data on VWD patients’ sociodemographic information, joint problems, and health-related quality of life (HRQoL).
Study participants were enrolled from HTCS located in seven states, including Georgia, Michigan, Illinois, Missouri, New York, Washington, and California. Ultimately, 77 patients with VWD type 1, 2 (2A, 2B, 2M, 2N), or 3 VWD were included in the analysis, all of whom were 12 years of age or older.
The results, which were published in the journal Haemophilia, showed that a relatively high proportion of the participants met the criteria for both depression and anxiety, with rates at 63.6%, and 58.3% respectively. There was not a significant difference in depression rates between participants ages 12–17 years and adults 18 years of age and older (65.0% vs. 63.2%). The anxiety rate among age 12–17 years was 16.2% higher than among adults (70.0% vs. 53.8%), though deemed “not statistically significant,” by the authors.
Several variables were strongly associated with depression in adults, including most prominently, joint problems. Being single, divorced, widowed, or separated were also linked to depression in adult participants, prompting the authors to emphasize the value a strong support network for individuals with VWD. In addition, participants aged 12-17 were more likely to have anxiety. The authors describe this as a time when adolescents with VWD begin a slow transition to adulthood, wherein they gradually take greater ownership of their own care. Coinciding with puberty, this is a process that will naturally prompt some stressful situations even under the best of circumstances.
The authors posit that findings such as these should be impetus for enhanced mental health screening with VWD patients at HTCs.
“In conclusion, our study revealed higher rates of major depression and anxiety in this VWD sample than in the general US population. Depression or anxiety had a significant negative impact on HRQoL in individuals living with VWD. Mental health screening is critical, especially for patients who lack social support, have joint problems, have worse health or those in their adolescent years,” explained the authors. “This study underscores the need for a multidisciplinary approach and adequate funding for the comprehensive care of VWD patients and should compel VWD providers to offer regular mental health assessments in conjunction with bleeding symptom evaluation.”
Read the full open access paper published by Haemophilia for more about the validated measures utilized in this study, along with more information on survey administration, data gathering, study limitations, and additional findings.
Citation
Roberts JC, Kulkarni R, Kouides PA, Sidonio RF Jr, Carpenter SL, Konkle BA, Wu J, Ullman MM, Curtis R, Baker JR, Crook N, Nichol MB. Depression and anxiety in persons with Von Willebrand disease. Haemophilia. 2022 Dec 14. doi: 10.1111/hae.14725. Epub ahead of print. PMID: 36516311.
Format:
Disclaimer: NHF provides periodic synopses of articles published in peer reviewed journals, the purpose of which is to highlight papers that cover a wide range of topics and speak to a broad spectrum of the inherited blood disorders community. Topics include shared decision making, gene therapy, health equity, and more. NHF hopes you find this content to be informative and engaging.
Any questions about the articles featured here should be directed to the publishing journal and/or the study authors. This content is for general information only. NHF does not give medical advice or engage in the practice of medicine. NHF under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.
