Changes in the quality of life of people with thalassemia major between 2001 and 2009

Giorgia Gollo,¹ Gaia Savioli,² Manuela Balocco,² Cristina Venturino,³ Elio Boeri,⁴ Massimo Costantini,¹ Gian Luca Forni<sup>2

1</sup>Regional Palliative Care Network, IRCCS AOU San Martino-IST, Genoa; ²Hematology, Center for Thalassemia, Galliera Hospital, Genoa, ³Psychiatric Service, Galliera Hospital, Genoa, ⁴Department of Hematology and Oncology, Gaslini Institute, Genoa, Italy

Background: The prolonged survival of patients with thalassemia major as a result of the novel therapeutic strategies introduced in the last decade makes patient quality of life an important issue. This study investigated the changes occurring in overall quality of life in patients with thalassemia in the last decade.
Methods: This was a population-based cross-sectional survey of quality of life in the entire population with thalassemia major resident in the Liguria region of Italy from 2001 to 2009. The self-administered Short Form-36 (SF-36) questionnaire was used to measure quality of life in patients with thalassemia.
Results: Forty-nine and 52 eligible patients were assessed in 2001 and 2009, respectively. A total of 43 patients were assessed in both 2001 and 2009. Almost 40% of these 43 patients received deferasirox in 2009, a drug which was not available in 2001. The distribution of ferritin levels was lower in 2009 (median 730) as compared with 2001 (median 1107). Analysis of the raw differences between the two years did not show a significant difference. An improvement was observed in most SF-36 scales in 2009 as compared with 2001, particularly in the Mental Health scale (mean difference in Z score +4.0; 95% confidence interval 0.4–7.5; P = 0.030) and in the Mental Component Summary scale (mean difference in Z score +3.2; 95% confidence interval 0.2–6.2; P = 0.039).
Conclusion: The challenge associated with new therapies and improvement in mental quality of life dimensions indicates that implementation of effective interventions for screening and evaluation of quality of life is now urgent.

Keywords: thalassemia major, quality of life, survey, Short Form-36