Preschool Pain Management Program for Young Children with Sickle Cell Disease: A Pre-Post Feasibility Study.

OBJECTIVE: Vaso-occlusive pain crises in sickle cell disease (SCD) often begin in early childhood. We developed an online pain management intervention to teach caregivers of preschool-aged children with SCD behavioral pain management strategies. The feasibility study goals were to examine response to recruitment, barriers to participation, engagement, acceptability and perceived usefulness of the intervention, and suitability of outcome measures. METHODS: Caregivers of children aged 2.0-5.9 years with access to text messaging and a device to access online videos were recruited from a Southeastern outpatient hematology clinic for a 12-week intervention consisting of pain management videos. Videos taught caregivers behavioral pain management strategies and adaptive responses to pain. Workbook activities helped tailor strategies to their child. Caregivers completed process measures as well as baseline and follow-up measures of pain catastrophizing (Pain Catastrophizing Scale-Parent Report) and responses to their child's pain (Adult Response to Children's Symptoms). RESULTS: Fifty percent (10 of 20) of eligible parents enrolled. Caregivers partially completed (N = 6), completed (N = 3), or did not engage (N = 1) in the intervention. Caregivers who engaged in the program reported implementing the pain management strategies. The intervention was rated as high quality, relevant, and useful. Measures of pain catastrophizing and responses to their child's pain appeared sensitive to change. CONCLUSIONS: The intervention to promote adaptive coping to pain was acceptable and feasible for caregivers though we found barriers to delivering the intervention to parents. Evaluation of a modified version of the program is indicated to assess implementation issues and effectiveness.

Psychosocial functioning and adjustment to university settings: comparing students with chronic illnesses to healthy peers.

Purpose: College students with chronic illnesses are vulnerable to poor adjustment, but it remains unclear how these students differ from healthy peers. This study compares psychosocial adjustment and risky behavior between students with and without chronic illnesses. Participants: Participants (N = 629, 78% Caucasian, 77% Female) were recruited from universities. Methods: Participants completed measures of illness history, anxiety, depression, stressful life events, social support, and risky behavior. Results: College students with chronic illnesses demonstrated significantly greater symptoms of anxiety F(1,620) = 8.742, p < .003, depression F(1,614) = 26.947, p < .001, more stressful life events F(1,476) = 23.671, p < .001, and lower social support F(1,613) = 15.645, p < .001. No differences in risky behaviors between groups emerged F(1,601) = 3.432, p = .064. An indirect effect of health status on risk-taking behavior was observed [b = .677, 95% CI (.351, 1.072)] partially mediated by depression. Conclusion: College students with chronic illnesses demonstrated worse psychosocial outcomes than healthy students, warranting programs to support these students. Depressive symptoms partially mediated risky behavior.

Sleep and fatigue among youth with sickle cell disease: A daily diary study.

Youth with sickle cell disease (SCD) experience disease effects including vaso-occlusive pain crises, poor sleep quality, and fatigue. The present study examines how sleep quality and pain medications impact fatigue in youth with SCD. Daily diaries assessing pain, fatigue, sleep quality, mood, and use of pain medications from 25 youth with SCD ages 11 to 18 years were collected for eight consecutive weeks. Poor sleep quality predicted increases in next-day fatigue levels while controlling for pain and mood. Sleep quality did not moderate the existing temporal relationship between pain and next-day fatigue established by Reinman et al. (2019) as predicted. Non-opioid medications affected ratings of next-day fatigue but opioid medications did not. Sleep quality appears to play an important role in predicting next-day fatigue levels and may be an important target for intervention. Pain medication use did not substantially contribute to prospective fatigue levels among youth, but requires further study.

Changes in the developmental status of preschoolers with sickle cell disease.

Developmental monitoring and screening are recommended strategies for identifying children with sickle cell disease at high risk for cerebrovascular complications. Studies examining developmental screenings have provided little data on change over time. We examined screenings longitudinally in 43 children screened as two-year-olds and four-year-olds using the Ages and Stages Questionnaire, 2nd edition. Only two-thirds of children had stable screening outcomes. A new onset of cerebrovascular complications predicted the emergence of developmental delay (P = 0.017). Multivariate analysis suggested a benefit from formal developmental interventions. Regular developmental screening during the preschool period is important to identify systematic changes in developmental status.

Sociodemographic and Biomedical Correlates of Developmental Delay in 2- and 4-Year-Olds with Sickle Cell Disease.

BACKGROUND: Developmental delay occurs frequently in sickle cell disease (SCD). Psychosocial and biomedical factors contribute to delays, but most studies have not examined the timing of risk factors and developmental delay. We examined sociodemographic and biomedical factors to evaluate whether risks of developmental delay differed across 2 developmental periods. METHODS: We examined Ages and Stages Questionnaire, second edition (ASQ-2), outcomes in 2-year-olds (n = 100) and 4-year-olds (n = 101) with SCD. ASQ-2 data were obtained from routine developmental screenings administered as part of health care between 2009 and 2016 at a single hematology clinic. Medical record reviews were used to identify sociodemographic and biomedical factors associated with positive screenings for developmental delay. RESULTS: Two-year-olds with positive ASQ-2 screenings (n = 32; 32%) were less likely to have private health insurance or to have been in formal daycare and more likely to have a severe SCD genotype. Four-year-olds with positive screenings (n = 40; 40%) were more likely to have a severe SCD genotype or an abnormal transcranial Doppler ultrasound (TCD) examination indicating high stroke risk. The strength of the association between positive screenings and insurance status, severe genotypes, and TCD examinations differed across the 2 age groups. Domain-level outcomes on the ASQ-2 also differed across the 2 age groups. CONCLUSION: The cross-sectional data indicate biomedical and psychosocial risks are related to developmental delay, but the association with specific risk factors differs across age.

[Formula: see text] Social-environmental moderators of neurodevelopmental outcomes in youth born preterm: A systematic review.

Objective: Preterm birth represents a significant medical event that places infants at a markedly greater risk for neurodevelopmental problems and delays. Although the impact of medical factors on neurodevelopment for those born preterm has been thoroughly explored, less is known about how social-environmental factors (e.g., socioeconomic status, family functioning) moderate outcomes. This review explores the quantity and methodological rigor of research on social-environmental factors as moderators of the relationship between preterm birth and neurodevelopmental outcomes.Methods: Articles published between January 1980 and December 2016 were identified from a comprehensive meta-analysis and systematic review on neurodevelopmental outcomes following preterm birth. A systematic review of MEDLINE was conducted to identify articles published from January 2017 through April 2019.Results: Eighty articles met the inclusion criteria. The majority of studies matched preterm and control groups on social-environmental factors (n = 49). The remaining studies included social-environmental factors as moderators (n = 13) or correlates (n = 11) of neurodevelopmental outcomes. Only seven studies did not include reports on social-environmental factors.Conclusions: This systematic review suggests that social-environmental factors are often considered to be ancillary risk factors to the larger medical risk imparted by prematurity. Studies typically focused on socioeconomic status rather than more modifiable parent/family factors that can be targeted through intervention (e.g., parental mental health) and evidenced mixed findings regarding the significance of social-environmental factors as moderators. Further research is needed to identify the relative influence of social-environmental factors to inform future psychosocial interventions.