Taking Care of the Caregivers: A Quality‐of‐Life Measure for the Parents of Children With Transfusion‐Dependent

Background Children with transfusion‐dependent thalassemia (TDT), also known as thalassemia major, require monthly blood transfusions and regular iron chelation therapy for long‐term survival. While the burden of caring for these children is recognized, little has been done to address the parents’ experience. Procedure A 38‐item parent self‐report was included in the previously designed disease‐specific tool, the transfusion‐dependent quality‐of‐life questionnaire (TranQol), to identify the issues they may be facing. We wanted to ensure that the self‐report was reliable and valid. Questionnaires were given to parents during their children's routine clinic visits as part of a multi‐center North American study of the TranQol. Construct validity was assessed using Pearson's correlation with the Pediatric Quality of Life (PedsQL) Family Impact Module (FIM) (hypothesis: correlation of 0.4–0.6). Results Sixty‐seven parents completed both the TranQol and PedsQL Family Impact Module questionnaires at baseline. There was substantial correlation ( r = 0.76) between TranQol parent self‐report scores (median 63, interquartile range [IQR]: 53–76) and PedsQL Family Impact Module scores (median 77, IQR: 59–89). Conclusions The median PedsQL FIM score was similar to previously reported scores for parents of children with sickle cell disease. The TranQol parental burden tool demonstrated construct validity was internally reliable (Cronbach's α = 0.94) and had acceptable test–retest reliability (intraclass correlation coefficient [ICC] = 0.81), for future research into TDT. In addition, this tool could also be used to help clinicians assess the impact of the disease on parents to potentially target appropriate support and care that is required.