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The impact of thalassemia major and thalassemia intermedia and their associated complications on quality of life (QOL) is largely unknown. Determining the degree of health impairment as perceived by the patient is essential information needed to recommend suitable therapy. The objective of this study was to evaluate QOL in transfusion-independent patients with thalassemia (non-Tx) compared with that in transfused patients (Tx) and to identify the factors that affect QOL in thalassemia. A convenient sample of 48 thalassemia patients (29 Tx and 19 non-Tx) with mean age of 14.6 years (SD = 7.5 years) were selected during a comprehensive visit to complete a Dartmouth Primary Care Cooperative Information Chart System (COOP) questionnaire. Patients rated QOL from excellent (1) to poor (5) on five dimensions of health status. Scores of 4 or 5 represent major limitations. These results were augmented by a brief medical history and chart review. Forty-one percent of Tx patients and 47% of non-Tx patients reported severe impairments in 1-6 and 1-2 domains, respectively. The most commonly reported affected domains were feelings such as anxiety, depression, and concern of overall health status or indications of recent deterioration in health. In contrast with previous beliefs, transfusion-independent thalassemia patients also suffer serious impairment in QOL. Presented data suggest that all patients with thalassemia undergo QOL assessment so that interventions focused on affected domains can be implemented.

This article outlines general strategies for outreaching to Southeast Asian immigrant and refugee communities with thalassemia education. Because of positive net migration and increased birthrates during the last 15 years, Asian Pacific Islanders are among the fastest growing populations in California. Dr. Fred Lorey of California Newborn Screening shows that 1 of 12 Southeast Asians is a carrier of hemoglobin E, demonstrating a particular need to outreach to these communities. The challenge of educating Southeast Asian populations include language barriers, differences in cultural and/or religious beliefs, geographic location, and unfamiliarity with and/ or mistrust of Western health care systems. In addition, outreach workers must consider the great diversity of ethnicity, language, literacy, and education levels, and degree of acculturation to the US within the Asian/Southeast Asian groups. It is crucial before embarking on any outreach campaign to understand the history and make-up of the target audience, including ethnic minorities and dialects, to translate written materials into appropriate languages or audio formats, and to have a group of trained interpreters for events. Additionally, a continuing education model for the outreach/medical staff is important to maintain robust understanding of these diverse communities. Specific strategies include using visual aids, medical professionals as authority figures, and bicultural high school and college students during presentations. Finally, establishing trust and maintaining a continued presence in communities are the most important aspects of a successful outreach campaign.