Findings from a recent study published in the Journal of Pediatric Hematology/Oncology showed that teens with hemophilia scored lower on self esteem measures when compared to a control group. The study was conducted at the Dr Behcet Uz Children’s Hospital in Turkey, where specialists from pediatric hematology, pediatric psychology, and physical therapy/rehabilitation looked at 32 enrolled patients with hemophilia (mean age, 16.2 years) and 35 control participants (mean age, 16.02 years).
Individuals in the affected group were diagnosed and received follow-up care at the center between September 1, 2017, and November 30, 2017. Among this group, 87.5% had hemophilia A and 12.5% had hemophilia B. Most of the patients were diagnosed with either severe (68.8%) or moderate (21.9%) hemophilia. Secondary prophylaxis was administered to 81.3% of patients, while on-demand therapy was administered to 18.7%.
Patient data relevant to hemophilia type, disease severity prophylaxis regimen and annualized bleeding rate were included in the study. Additional tools were also utilized including the Hemophilia Joint Health Score (HJHS) and the Offer Self-Image Questionnaire (OSIQ). The OSIQ, a self-descriptive personality test designed for teens, was administered as a self-esteem measure in both the hemophilia patient group and the unaffected control group.
The results showed the hemophilia group to have a lower total median OSIQ score compared to the control group. Hemophilia patients also scored lower on a series of subscale parameters including such things as idealism, mental health, and body image – the one exception was sexuality attitudes, where hemophilia patients scored higher than the control group. Poorer HJHS results also corresponded with lower OSIQ scores.
“Low self-esteem in hemophilia patients indicates the importance of lifelong psychosocial support,” concluded the investigators. “Using OSIQ with HJHS during follow-up of hemophilia patients may be useful for management.”
Source: Hematology Advisor, January 7, 2019