Prevalence of Depression in US Patients with Hemophilia A Compared with a General Medical Population: A Retrospective Database Analysis

Prevalence of Depression in US Patients with Hemophilia A Compared with a General Medical Population: A Retrospective Database Analysis

Year: 2014
Grants:
Bleeding Disorders Conference
Psychosocial Issues
Author(s):
Thomas J. Humphries, Jennifer Pocoski, Rajesh Kamalakar

Objective:

Prevalence of clinical depression in persons with hemophilia (PWH) has been reported to be from 0%–50%. Most papers studied fairly small numbers of PWH; many had no controls and used instruments not validated for depression. One recent paper, using the Patient Health Questionnaire-9, a validated instrument for depression, reported a prevalence of 37% in 41 adult PWH. Our objective was to determine the prevalence of depression in PWH in the United States.

Methods:

Using the MarketScan® Commercial and Medical Research databases, we compared depression prevalence in 2506 PWH and 7518 controls. Male patients with hemophilia A were identified using an International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) code (ICD-9-CM 286.0) and were matched (based on age, eligibility months in the study, region, and health plan type) in a 1:3 ratio with controls (no hemophilia diagnosis). Evidence of depression was determined using ICD-9-CM 296.20– 296.26, 296.30–296.36, and 311 codes. Chi-square tests were used to compare frequencies.

Summary:

PWH had a statistically significant increase in depression prevalence overall and in age groups 50–59 years and 60–69 years and a numerical increase in all other age groups except 18–29 years (Table). The delta between PWH and controls steadily increased between ages 30 and 69 years.

Table. Patients with Major Depressive Disorder

Table. Patients with Major Depressive Disorder

Conclusions:

Commercial claims databases have limitations, including coding errors and inability to verify accuracy of diagnoses. However, in PWH versus a 3:1 control group in a US commercially insured sample that may not be representative of the overall population, depression prevalence was greater in PWH, reaching a peak of 16% in those aged 60–69 years. Awareness of this comorbidity is important as the hemophilia population ages in an era of declining healthcare-delivery resources.

Study Design of a Phase 3, Open-Label Trial of the Safety and Efficacy of Recombinant Factor IX Fc Fusion Protein for the Prevention and Treatment of Bleeding Episodes in Previously Untreated Patients With Severe Hemophilia B

Year: 2014
Grants:
Bleeding Disorders Conference
Available Clinical Studies
Author(s):
Beatrice Nolan, Steven Pipe, Marilyn J. Manco-Johnson, Pia Petrini, Margaret Ragni, Baisong Mei, Geoffrey Allen
NHF Avatar

A Standardized Approach to Empowering Families with Hemophilia

Year: 2014
Grants:
Social Work Excellence Fellowship
Author(s):
Shannon Brown

Hemophilia is a rare lifelong condition which can be potentially life-threatening. Parents bare a significant responsibility for delivery of medical care because the treatment for hemophilia begins early in life for children within the home setting. As a result, parents frequently exhibit a heightened level of stress, anxiety, and subsequent trauma around the acceptance of the illness and the administration of medication management. To address the multifaceted nature of chronic illness for patients and their families, the ideal treatment utilizes a multidisciplinary team. Our proposed 3P Patient Parent Power Program aims to standardize care for families with patients of hemophilia using a tiered approach of psychosocial support. The necessary level of support will be provided to parents in order for them to successfully provide in-home prophylactic factor treatment. The goal of the program is to reduce parental stress and anxiety related to this chronic illness and increase feelings of empowerment for the parent and child.

Hemophilia of Georgia's Preventive Dental Program

Hemophilia of Georgia's Preventive Dental Program

Year: 2014
Grants:
Bleeding Disorders Conference
Psychosocial Issues
Author(s):
Gail Day, Deniece Chevannes
Depression in children with severe Hemophilia - a pilot study

Depression in children with severe Hemophilia - a pilot study

Year: 2014
Grants:
Bleeding Disorders Conference
Psychosocial Issues
Author(s):
Gaby Golan, Gili Kenet

Children with severe Hemophilia (CWH) suffer pain and inconvenience due to the required IV factor concentrates' injections and mostly exhibit poor quality of life. These children don't have any hope that their life will improve in the future. Most of them keep the Hemophilia a secret; therefore they are unable to get any emotional support from their peer group. These parameters are known stressors and triggers leading to depression, especially among children and adolescents (due to their lack of mature psychological defense mechanisms). The consequences of depression might be hazardous, since such children may neglect their medical treatment, leading to further deterioration of their medical state.

Objective:

We compared the depression level of children with Hemophilia to healthy children of the same age and background.

Methods:

Depression was evaluated using a standard validated questionnaire of depression that was developed by A.Beck - the CDI. We compared 20 children with severe Hemophilia with 25 non-Hemophiliac children.

Summary:

The calculated score for degree of depression was 7.6 for CWH vs age matched controls with a score of 12.32. The mean of normal populations is around 9. Parametrical T test for Equality of Means = 0.013.

This is the first reported study objectively addressing the issue of depression in CWH.

Conclusions:

We found the opposite of what we had expected: The children with Hemophilia were rated significantly much less depressed then the children without Hemophilia. This finding merits further validation in future larger studies and

must be examined very carefully, due to the complexity of the psychological defense mechanisms.

Jonathan Roberts

Jonathan Roberts

Year:
-
Grants:
NHF-Takeda Clinical Fellowship
Author(s):
Jonathan Roberts
Dr. Jonathan Roberts is currently a pediatric hematology and oncology fellow with the Medical College of Wisconsin and the Children's Hospital of Wisconsin. His fellowship mentor will be Joan Gill, MD, Professor of Pediatrics at the Medical College of Wisconsin and Director of the Comprehensive Center for Bleeding Disorders (CCBD) at the BloodCenter of Wisconsin. Roberts graduated with honors from Greenville College, Illinois, and received his MD from Southern Illinois University School of Medicine. He did his residency in Pediatrics at the University of Illinois at Peoria and Children's Hospital of Illinois, where he also distinguished himself, receiving awards of excellence for critical care and research. During his pediatric residency, Roberts worked with Dr. Michael Tarantino to initiate a clinical research trial to assess the role of FXIII on intraventricular hemorrhage in premature, low birth weight infants. As a NHF-Baxter Clinical Fellow, Roberts will receive focused training and gain clinical experience through the hemostasis clinics at CCBD and further develop his research skills in a project to develop a new ELISA-based assay for assigning VWF phenotype. Roberts has plans to pursue a Master's Degree in Clinical and Translational Science. His goal is to become an expert physician/scientist with a long-term career focus on hemophilia, and other bleeding and clotting disorders.