Health-Related Communication in Adolescents and Young Adults with Sickle Cell Disease

Introduction: Sickle cell disease (SCD) is a genetic condition with multiple acute and chronic health complications, including pain, stroke, and organ damage. Health-related communication between patients, and both others (e.g., family members) and healthcare providers plays an important role in pain and disease management. High quality health-related communication is particularly vital for adolescents and young adults (AYAs) as they navigate managing increased disease burden and the transition from pediatric to adult care. However, little is known about the quality and associated risk factors for communication difficulties among AYAs with SCD. This study aimed to examine: 1) the quality of health-related communication among AYAs and 2) associations between health-related communication and sociodemographic, disease, pain, and psychological factors.

Methods: AYAs with SCD (N=417; mean [M] age=18.7 years, range=13.2-29.3, 50% female, 100% Black, 65% Hb SS/Sβ0 – thalassemia genotype, 60% received hydroxyurea) enrolled in the Sickle Cell Clinical Research and Intervention Program (SCCRIP; NCT02098863) completed study procedures. Within this sample, AYAs completed 6 items rated on a 5-point Likert scale (0=never, 1=almost never, 2=sometimes, 3=often, 4=almost always) from the Pediatric Quality of Life Inventory Sickle Cell Disease Module (PedsQL-SCD) Communication I and II subscales, which assessed health-related communication (e.g., difficulties asking doctors and nurses questions, difficulties telling others when in pain). Patients also completed items on the PedsQL-SCD that assessed SCD-related worry (9-items), low mood (1-item), general anxiety (1-item), pain (Pain and Hurt subscale), and pain interference (Pain Impact subscale). Response scales of items from the PedsQL-SCD were converted to a 100-point scale and transformed, such that higher scores indicated better communication (0=100, 1=75, 2=50, 3=25, 4=0). Demographic, treatment-related, and diagnostic factors were obtained from the SCCRIP database. To examine health-related communication, we calculated the average response across all items within subscales Communication I and II of the PedsQL-SCD. Subscale scores were combined to create an overall measure of health-related communication with others and healthcare providers. Regression models adjusted for age were calculated to examine the effect of demographic, disease, treatment, and psychosocial factors on health-related communication. False discovery rate adjusted p-values (=q value) were calculated to account for multiple comparisons.

Results: The mean level of overall health-related communication among AYAs was 71.0 (standard deviation [SD]=22.6). The mean average response on health-related communication items was comparable for adolescents (M=72.3, SD=23.0) and young adults (M=68.4, SD=21.7). Regarding specific areas of communication, the most common communication difficulty amongst the overall sample was “It is hard for me when others do not understand how much pain I feel,” with 27% of AYAs reporting this communication difficulty occurred often or almost always (i.e., score ≤25 on the item) in the past month. In addition, a greater number of young adults than adolescents reported often or almost always on this item (33.5% vs. 23.0%, p=.027). Among all AYAs, increased communication difficulties were associated with male sex (β=9.1), Hb SS/Sβ0 genotype (β=5.4), elevated disease-related worry (β=0.66), elevated general worry (β=0.27), low mood (β=0.37), pain (β=0.47), and pain interference (β=0.48) (ps ranging from <.001 to .02) at q<.05.

Conclusion: The current study is the first, to our knowledge, to examine health-related communication specifically in AYAs with SCD. Male sex, Hb SS/Sβ0 genotype, psychological factors (e.g., worry, low mood) as well as increased pain and pain interference were associated with increased difficulties with health-related communication. These findings indicate a substantial proportion of AYAs with SCD experience difficulties with pain communication, potentially creating additional barriers to optimal care. Health-related communication, and in particular pain communication, should be routinely assessed among AYAs with SCD and intervened upon within the context of their relationships with healthcare providers and important others (e.g., caregivers, friends).