Quality of Life and Age Related for Hemophilia Patients

Quality of life for hemophilia patients and their caregivers steadily improved, according to research published in the quarterly journal Blood Transfusion.

Researchers from the National Institute of Health in Rome surveyed the Italian Federation of Haemophilia Societies in order to investigate the social burden and quality of life impacts of patients with hemophilia. In recent years, the researchers noted, life expectancy, quality of life, and progress have all improved, although though the researchers specifically wanted to examine if those improvements alleviated the costs of hemophilia per patient and caregivers.

To conduct this study, investigators designed a web based cross sectional study which targeted Italian hemophilia A and B patients and their caregivers (89 patients and 17 caregivers were surveyed total). Patients were anonymous and were surveyed via email between March and October 2012. Patients were asked about demographic information as well as quality of life in the past 6-12 months. Direct costs — such as drugs, outpatient and inpatient care, and a range of primary care services – and indirect costs like lost productivity brought on by the disease were evaluated in the survey as well. Patients were asked about their working days and hours per day lost due to the disease, morbidity, or disability brought on by hemophilia, and the age of their possible early retirement. Quality of life was evaluated using an adopted EuroQoL survey, which consists of 5 domains: mobility, self care, anxiety and depression, usual activities, and pain or discomfort.

The majority of the patients (75.3 percent) were adults with hemophilia A (79.8 percent). Demographically speaking, 99 percent of the adults were married, 82 percent had a medium high education level, and 60 percent of the adults were employed.

More than 75 percent of the adult patients had difficulties in the physical sphere, specifically in the realms of mobility (75 percent), and pain and discomfort (76.7 percent). Anxiety and depression problems occurred in 43.3 percent of adult patients and 53.9 percent of parents.

The annual estimated average cost per person in 2012 was estimated to be 117,731.72 € ($142,450) with the majority of the money spent on drugs. Excluding hematological visits, adult patients requiring an average of 3.89 specialist visits over 6 months, compared to child patients who required 2.04 specialist visits over the same 6 months.

Indirect costs made up just 4.4 percent of total costs, and included informal care: 57 percent of children and 13 percent of adults required adult care. Informal care was used instead of the need for a secondary caregiver. Other indirect costs were social services and non healthcare transport or 3 and 2 percent, respectively. Decreased labor productivity was reported by 34 percent of the patients, who stated they had an average of 38 days of sick leave. Nearly 60 percent of retired patients said they retired earlier than the proper retirement age.

“The quality of life increase in hemophilic patients implies both a life’s improvement and a decrease in the overall costs other than drugs: even if we do not have yet evidence that the new drugs’ increased costs may be offset by the other costs’ reduction, the drugs’ costs extent over the total ones suggests that only a partial offset might be possible,” the authors concluded.