Abstract Background Adults with sickle cell disease (SCD) endure immense physical and psychological suffering related to their illness. Patients sometimes cope with their illness with strategies such as social isolation and withdrawal, which may exacerbate psychological distress and worsen emotional health. However, the prevalence of social isolation among adults with SCD and its association with patient reported outcomes and healthcare utilization are not well-established. Objectives We describe the prevalence of social isolation at the Massachusetts General Hospital (MGH) Comprehensive SCD Center and its association with patient-reported and healthcare utilization outcomes in adults with SCD. Methods We conducted a cross-sectional study of adults (age ≥ 18) with SCD at MGH in Boston, MA (4/2024 – 5/2025). We approached patients with HbSS, HbSC, and HbS-beta thalassemia in the outpatient SCD clinic, infusion center, and inpatient hospital unit. We measured social isolation (PROMIS social isolation 8a), effectiveness of social support (Social Support Effectiveness Questionnaire), SCD social network (Lubben Social Network Scale), quality of life domains (Adult Sickle Cell Quality of Life Measurement ASCQ-Me scales for pain severity, pain-interference, and the physical, social, and emotional health SCD), and psychological symptoms (PROMIS anxiety and depression). We additionally assessed patient-reported severity of SCD (ASCQ-Me medical history). For PROMIS and ASCQ-Me measures, we calculated T-scores to standardize scores compared to the instruments' reference population. We defined ASCQ-Me medical history scores 2 as severe SCD. From the medical record, we collected data on infusion center visits, emergency department visits, and inpatient hospitalization within 3 months of survey completion. We used linear regression to evaluate the association of social isolation and patient-reported outcomes and logistic regression to evaluate health utilization outcomes. Results This analysis included 53 adults with SCD. Mean age (standard deviation – sd) of study participants was 31.1 (11.7), and 52.8% were male. Most study participants had HbSS disease (75.5%), were currently taking hydroxyurea (62.2%), and consented to participate in this study during a routine outpatient clinic visit (86.8%). Nearly half (41.5%) rated their SCD as severe and regularly required outpatient opioids to manage SCD-associated pain. Median social isolation T-score was 49 reference mean T-score = 50, and 11.3% of participants reported significantly worse social isolation (T-score ≥ 60) than the instrument's reference population. Patients with more severe disease reported numerically worse social isolation (mean score: 50.7 vs 46.0, p=0.06). Over one-third of study participants (37.7%, 20/53) had never meaningfully interacted with another patient with SCD. Of participants who knew other patients with SCD, a minority reported comfort to call on a peer for help (30.3%, 10/33) or discussion of private matters (39.1%, 13/33). Higher social isolation was associated with lower emotional health (B=-0.4, Std error SE=0.1, p0.001) and higher depression (B=0.6, SE=0.1, p0.001) and anxiety (B=0.5, SE=0.2, p=0.005) symptoms. Notably, social isolation was not significantly associated with higher frequency, impact, or interference of SCD-associated pain. On the other hand, higher levels of social support were associated with higher emotional health (B=0.22, SE=0.06, p=0.001) and lower symptoms of depression (B=-0.3, SE=0.1, p=0.01) and anxiety (B=-0.3, SE=0.1, p=0.02). Social isolation was not associated with increased utilization of infusion center, emergency department, or inpatient hospitalization within 3 months of survey completion. DiscussionAmong adults with SCD, social isolation is a significant component of psychological distress and symptoms of anxiety and depression. Social isolation may be more prevalent among those with severe disease. On the other hand, increased effectiveness of social support is associated with decreased psychological distress. However, many adults with SCD lack meaningful support from their fellow patients with SCD. Supportive care interventions to address social isolation and to promote peer connection are desperately needed in this vulnerable patient population.
Allen Cheng (Mon,) studied this question.