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. 2023 May 1;6(5):e2314070.
doi: 10.1001/jamanetworkopen.2023.14070.

Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease

Kelly M Harris  1   2 , Liliana Preiss  3 , Taniya Varughese  1 , Anna Bauer  4 , Cecelia L Calhoun  5 , Marsha Treadwell  6 , Rita Masese  7 , Jane S Hankins  8 , Faiz Ahmed Hussain  9 , Jeffrey Glassberg  10 , Cathy L Melvin  11 , Robert Gibson  12 , Allison A King  1   2   13 ; Sickle Cell Disease Implementation Consortium
Affiliations

Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease

Kelly M Harris et al. JAMA Netw Open. .

Abstract

Importance: Pain related to sickle cell disease (SCD) is complex and associated with social determinants of health. Emotional and stress-related effects of SCD impact daily quality of life and the frequency and severity of pain.

Objective: To explore the association of educational attainment, employment status, and mental health with pain episode frequency and severity among individuals with SCD.

Design, setting, and participants: This is a cross-sectional analysis of patient registry data collected at baseline (2017-2018) from patients treated at 8 sites of the US Sickle Cell Disease Implementation Consortium. Data analysis was performed from September 2020 to March 2022.

Main outcomes and measures: Electronic medical record abstraction and a participant survey provided demographic data, mental health diagnosis, and Adult Sickle Cell Quality of Life Measurement Information System pain scores. Multivariable regression was used to examine the associations of education, employment, and mental health with the main outcomes (pain frequency and pain severity).

Results: The study enrolled a total of 2264 participants aged 15 to 45 years (mean [SD] age, 27.9 [7.9] years; 1272 female participants [56.2%]) with SCD. Nearly one-half of the participant sample reported taking daily pain medication (1057 participants [47.0%]) and/or hydroxyurea use (1091 participants [49.2%]), 627 participants (28.0%) received regular blood transfusion, 457 (20.0%) had a depression diagnosis confirmed by medical record abstraction, 1789 (79.8%) reported severe pain (rated most recent pain crises as ≥7 out of 10), and 1078 (47.8%) reported more than 4 pain episodes in the prior 12 months. The mean (SD) pain frequency and severity t scores for the sample were 48.6 (11.4) and 50.3 (10.1), respectively. Educational attainment and income were not associated with increased pain frequency or severity. Unemployment (β, 2.13; 95% CI, 0.99 to 3.23; P < .001) and female sex (β, 1.78; 95% CI, 0.80 to 2.76; P < .001) were associated with increased pain frequency. Age younger than 18 years was inversely associated with pain frequency (β, -5.72; 95% CI, -7.72 to -3.72; P < .001) and pain severity (β, 5.10; 95% CI, -6.70 to -3.51; P < .001). Depression was associated with increased pain frequency (β, 2.18; 95% CI, 1.04 to 3.31; P < .001) but not pain severity. Hydroxyurea use was associated with increased pain severity (β, 1.36; 95% CI, 0.47 to 2.24; P = .003), and daily use of pain medication was associated with both increased pain frequency (β, 6.29; 95% CI, 5.28 to 7.31; P < .001) and pain severity (β, 2.87; 95% CI, 1.95 to 3.80; P < .001).

Conclusions and relevance: These findings suggest that employment status, sex, age, and depression are associated with pain frequency among patients with SCD. Depression screening for these patients is warranted, especially among those experiencing higher pain frequency and severity. Comprehensive treatment and pain reduction must consider the full experiences of patients with SCD, including impacts on mental health.

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Conflict of interest statement

Conflict of Interest Disclosures: Dr Treadwell reported receiving grants from National Heart, Lung, and Blood Institute (NHLBI) during the conduct of the study and personal fees from Global Blood Therapeutics and Wolters Kluwer Health outside the submitted work. Dr Hankins reported receiving grants from NHLBI, Centers for Disease Control and Prevention, and Health Resources and Services Administration during the conduct of the study and personal fees from GBT and Forma Therapeutics outside the submitted work. Dr Glassberg reported receiving grants from National Institutes of Health (NIH) during the conduct of the study and personal fees from GBT, CSL Behring, Novartis, Sanius Health, and Roche outside the submitted work. Dr Melvin reported receiving grants from NIH/NHLBI outside the submitted work. Dr Gibson reported receiving grants from NIH during the conduct of the study. Dr King reported receiving grant K24 HL148305 from NHLBI outside the submitted work. No other disclosures were reported.

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