Health-related quality of life in sickle cell disease

We appreciate the interest in health-related quality of life (HRQOL) in patients with sickle cell disease (SCD) and in our Primer (Sickle cell disease, Nat. Rev. Dis. Primers 4, 18010 (2018))¹ by Dr Maynié-François and Dr Burtey in their correspondence (Comparing health-related quality of life in chronic diseases: the importance of analysing references. Nat. Rev. Dis. Primers https://doi.org/10.1038/s41572-019-0082-3 (2019))². Our goal with the figure illustrating HRQOL in SCD and other chronic diseases was specifically to focus on physical functioning and to help frame the burden of the disease for this patient population. We agree that there are no data directly comparing HRQOL of patients with SCD to that of patients with other chronic diseases. Thus, we can only compare current data from patients with SCD with previously published data from other chronic disease populations, and such comparisons present limitations. This difficulty highlights the need for additional research in HRQOL in SCD to continue to advance our knowledge in this area, including more-direct and contemporary comparisons with other diseases. Previously underappreciated, HRQOL assessments can help to guide health policy, resource allocation and strategic plans, and to assess effectiveness of interventions.