Cognitive functioning, patient health communication, and worry mediate pain predictive effects on health‐related quality of life in youth with sickle cell disease

Abstract

Objectives: The objective was to investigate the serial mediating effects of perceived cognitive functioning, patient health communication, and disease-specific worry in the relationship between pain and overall generic health-related quality of life (HRQOL) in youth with sickle cell disease (SCD) from the patient perspective. Methods: The pain, cognitive functioning, communication and worry scales from the Pediatric Quality of Life Inventory (PedsQL) Sickle Cell Disease Module and the Ped-sQL Multidimensional Fatigue Scale, and the PedsQL 4.0 Generic Core Scales were completed in a multisite national study by 233 youth with SCD of ages 5-18. Hierarchical multiple regression and serial multiple mediator model analyses were conducted to test the mediating effects of perceived cognitive functioning, health communication, and disease-specific worry as intervening variables in the association between the pain predictor variable and overall generic HRQOL. Results: Pain predictive effects on overall generic HRQOL were serially mediated by cognitive functioning, health communication, and disease-specific worry. In predictive analytics models utilizing hierarchical multiple regression analyses with age and gender demographic covariates, pain, cognitive functioning, health communication, and worry accounted for 65% of the variance in patient-reported overall generic HRQOL (P < .001), representing a large effect size. Conclusions: Perceived cognitive functioning, patient health communication, and disease-specific worry explain in part the mechanism of pain predictive effects on overall generic HRQOL in youth with SCD. Identifying SCD-specific pain, perceived cognitive functioning, health communication, and disease-specific worry as predictor variables of overall generic HRQOL from the patient perspective may inform clinical interventions and future patient-centered clinical research.

Mental health assessment of youth with sickle cell disease and their primary caregivers during the COVID‐19 pandemic

“…[2][3][4] Social, economic, and disease-related factors render youth with SCD and their caregivers susceptible to mental health issues; for example, depression and anxiety. [5][6][7][8][9][10][11] Among adolescents with chronic health conditions, depressive symptoms are associated with less disease self-management and more disability and hospitalization. 12 Societal disruptions during the 2020 COVID-19 pandemic disproportionately affecting communities with lower socio-economic and greater minority status, included prolonged school and workplace closures, social isolation, economic insecurity, and impaired mental health, such as depression, anxiety, loneliness.…”

“…Most people living with sickle cell disease (SCD) in the United States identify as Black and/or Latino, 1 whose communities are disproportionately underresourced and vulnerable to adverse social factors 2–4 . Social, economic, and disease‐related factors render youth with SCD and their caregivers susceptible to mental health issues; for example, depression and anxiety 5–11 . Among adolescents with chronic health conditions, depressive symptoms are associated with less disease self‐management and more disability and hospitalization 12 …”

“… 2 , 3 , 4 Social, economic, and disease‐related factors render youth with SCD and their caregivers susceptible to mental health issues; for example, depression and anxiety. 5 , 6 , 7 , 8 , 9 , 10 , 11 Among adolescents with chronic health conditions, depressive symptoms are associated with less disease self‐management and more disability and hospitalization. 12 …”

Mental Health Assessment of Youth with Sickle Cell Disease and Their Primary Caregivers During the COVID-19 Pandemic

“…stress and depression. [5][6][7][8] Societal disruptions during the 2020 COVID-19 pandemic included prolonged school and workplace closures, social isolation and economic insecurity disproportionately affected communities with lower socio-economic status. [9][10][11][12] People with SCD experienced increased complications and hospitalizations from COVID-19 infection compared to other Blacks.…”

Childhood deprivation and Health related quality of life and associated factors among Pediatric cancer patients at National Hospital, Tanzania

“…The copyright holder for this this version posted November 1, 2022. ; https://doi.org/10.1101/2022.10.26.22281579 doi: medRxiv preprint measures all pediatrics with various chronic diseases and Cancer module 3.0 is the specific for pediatric cancer patients and measure the severity of the disease [18,23,24].…”