A new tool for the assessment of satisfaction with iron chelation therapy (ICT-Sat) for patients with β-thalassemia major

Background High satisfaction with iron chelation is a major determinant for adherence to ICT in beta‐thalassaemia major (β‐TM) patients. In this study, a new tool to assess different domains of satisfaction for available forms of ICT was developed and validated. The impact of patients' satisfaction with ICT has been tested. Methods Items were generated via focus groups and a preliminary version with 24 items (ICT‐Sat) with an additional item for treatment preference and a knowledge questionnaire (KQ) was developed. 170 β‐TM patients from three Thalassaemia centers in Egypt, aged 2–32 years received three questionnaires to fill in; the new ICT‐Sat, a KQ, and a previously validated tool for satisfaction with ICT (SICT) and retested 4–6 weeks later to ensure re‐test reliability. Type of chelation, drug related adverse events, compliance with ICT, and serum ferritin level (SF) during the year prior to the study as well as available cardiac T2*data were recorded. Results One hundred and fifty two β‐TM patients completed all questionnaires; median age was 12 years. The final 15 remaining ICT‐Sat items, yielding to four domain scores, explained 70.6% of the total variance. The “perceived effectiveness” and “fear and worries” domains of the ICT‐Sat correlated significantly with the domains “perceived effectiveness” and “acceptance” of the SICT. Patients treated with oral ICT were more satisfied with perceived effectiveness, and their side effects. Conclusions A new clinically based ICT‐Sat tool was developed and revealed good psychometric characteristics. Adherence to ICT was better correlated with “perceived effectiveness” and SF level. Pediatr Blood Cancer 2012; 58: 910–915. © 2012 Wiley Periodicals, Inc.