Health‐related quality of life and adherence to hydroxyurea in adolescents and young adults with sickle cell disease

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Abstract Background Complications related to sickle cell disease (SCD) result in significant declines in health‐related quality of life (HRQOL). While hydroxyurea reduces SCD complications, adherence remains suboptimal. The study's objectives were to assess the feasibility of Internet‐based electronic assessment of HRQOL in SCD clinic and to examine the relationship between HRQOL and hydroxyurea adherence in adolescents and young adults (AYAs) with SCD. Procedure A cross‐sectional survey was administered on tablets to 34 AYAs (12–22 years old) in a SCD clinic from January through December 2015. Study measures included Patient Reported Outcomes Measurement Information System (PROMIS®) computerized adaptive testing and ©Modified Morisky Adherence Scale 8‐items (©MMAS‐8). Results Participants (59% male, 91% Black) had median age of 13.5 (range 12–18) years. Ninety‐one percent completed PROMIS® measures electronically in the clinic, meeting our feasibility criterion of ≥85% completion rate. ©MMAS‐8 scores positively correlated with fetal hemoglobin (HbF) (rs = 0.34, P = 0.04) and mean corpuscular volume (MCV) (rs = 0.42, P = 0.01) and inversely correlated with fatigue (rs = –0.45, P = 0.01), depression (rs = –0.3, P = 0.08), and social isolation (rs = –0.78, P = 0.02). Low ©MMAS‐8 scores, indicating poor adherence, were associated with worse fatigue (P = 0.001) and trended toward significance for pain (P = 0.07) and depression (P = 0.06). Homozygous hemoglobin S disease patients with low HbF (<16%) had worse social isolation (P = 0.04) and those with low MCV (<102 fl) reported worse fatigue (P = 0.001), pain (P = 0.01), mobility (P = 0.01), and social isolation (P = 0.04). Conclusions HRQOL assessment in the SCD clinic is feasible. SCD patients with low hydroxyurea adherence and/or low HbF or MCV levels had worse HRQOL scores, particularly fatigue. Future prospective studies examining the relationship between HRQOL and hydroxyurea adherence are warranted.

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