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. 2024 Jul 23;8(14):3629-3638.
doi: 10.1182/bloodadvances.2023012477.

Costs and impact of disease in adults with sickle cell disease: a pilot study

Sophie Lanzkron  1 , Nicole Crook  2 , Joanne Wu  3 , Sarah Hussain  4 , Randall G Curtis  5 , Derek Robertson  6 , Judith R Baker  2 , Diane Nugent  2 , Amit Soni  2 , Jonathan C Roberts  7   8 , Megan M Ullman  9 , Julie Kanter  10 , Michael B Nichol  3
Affiliations

Costs and impact of disease in adults with sickle cell disease: a pilot study

Sophie Lanzkron et al. Blood Adv. .

Abstract

We assessed the feasibility to estimate illness burden in adults with SCD, investigated factors associated with health-related quality of life (HRQoL), and estimated societal burden. We recruited 32 participants and collected data on fatigue, HRQoL, and work productivity and activity impairment via patient survey. Health care utilization was abstracted for the 12 months before enrollment using medical chart review. Mean age was 36.7 years; 84.4% of participants had hemoglobin SS or Sβthal0 disease, and 81.3% reported chronic pain (experiencing pain on ≥3 days per week in the past 6 months). Mean EQ-5D-3L visual analogue scale score was 63.4 and the index score was 0.79. The mean fatigue score was 57.9. Higher fatigue score was correlated with lower EQ-5D index score (correlation coefficient r = -0.35; P = .049) and Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) scores, including pain (r = -0.47; P = .006), sleep (r = -0.38; P = .03), and emotion scores (r = -0.79; P < .0001). The number of hospitalizations was negatively correlated with HRQoL (all P < .05). Patients who reported chronic pain had significantly lower mean ASCQ-Me sleep scores (48.3 vs 57.1; P = .04) and EQ-5D index scores (0.72 vs 0.89; P = .002) than those without chronic pain. Mean estimated annual per person costs were $51 779 (median, $36 366) for total costs, $7619 ($0) for indirect costs (estimated from lost earnings of participants), and $44 160 ($31 873) for medical costs. Fatigue, SCD complications, hospitalization, and chronic pain negatively affected HRQoL. This sample experienced a high economic burden, largely from outpatient doctor visits.

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Conflict of interest statement

Conflict-of-interest disclosure: S.L. received research funding from Global Blood Therapeutics (current Pfizer Inc), Shire, Novartis, and CSL Behring, and consulting fees from ICON, bluebird bio, Magenta, Novartis, Novo Nordisk, and Pfizer. J.W. received financial support through the project funding provided by Pfizer Inc and Global Blood Therapeutics (current Pfizer Inc). R.G.C. received consulting fees from the University of Southern California (through the project funding provided by Pfizer), Bayer, and Novo Nordisk. M.B.N. is the principal investigator for the Hemotology Utilization Group Studties research group and has received grant funding from Pfizer, Genentech Inc, Baxalta US Inc (Bannockburn, IL; a Takeda company), Octapharma, CSL Behring, Global Blood Therapeutics (current Pfizer Inc), and Novo Nordisk. The remaining authors declare no competing financial interests.

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References

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