Characterizing return-to-school after pain-related hospitalizations and hospital re-admission risk in pediatric sickle cell disease

Abstract Introduction: Pain is the primary cause of inpatient admissions in sickle cell disease (SCD), and re-admission to the hospital following discharge is common. For school-aged youth, a successful transition out of the hospital and a return to typical functioning necessitates school re-entry. However, little is known about rates of school return following discharge or modifiable factors that can serve as intervention targets in supporting school re-entry in SCD.The current study sought to assess the feasibility of daily monitoring to quantify the rate of return for school-aged youth with SCD following discharge, determine the relationship between school re-entry and re-admission for pain, and identify factors that may support school return. Methods: Sixteen youth (7-17 years) with SCD who attended in-person schooling and were currently admitted for SCD-related pain enrolled in an IRB-approved study. Participants and caregivers completed baseline measures prior to discharge on pain (including the Youth Acute Pain Functional Ability Questionnaire) and school functioning. Families were sent daily REDCap surveys about school attendance and pain severity for a period of ten consecutive school days after discharge. Descriptive analyses were used to assess feasibility of daily monitoring, return to school following discharge, pain severity, and school-related factors. Independent samples t-test analyses were used to assess differences for those who attended consistently versus variably after initially returning as well as for those who were and were not re-admitted for pain during the monitoring period. Results: Sixteen school-aged youth with SCD (age M = 13.75, SD = 2.46; 69% female; 75% HbSS) and caregivers completed all ten daily surveys (100% response rate). The majority of caregivers (56%) responded through mixed measures (REDCap survey or verbal responses by phone) whereas 44% responded entirely to surveys. All youth returned to school following discharge, returning 2.9 school days after discharge on average. However, only 37.5% (N=6) continued to consistently attend school. The majority of youth (N=10, 62.5%) had variable attendance during the monitoring period. Half of those with variable attendance (N=5) were ultimately re-admitted for pain during the monitoring period. Variable attenders had an average rate of return to school of 3.40 school days (SD=1.96), which was not significantly different from consistent attenders (M=2.00, SD=.90), t=1.64, df=14, p>.05. Variable attenders also did not differ on their day 1 post-discharge pain rating (M=3.10, SD=2.89) compared to those with consistent attendance (M=2.50, SD=2.59) (t=.418, df=14, p>.05). There were no significant differences between those who were re-admitted (N=5) and those who were not re-admitted (N=11) in days to return to school, pain ratings on day of school return, functional impairment due to pain prior to discharge, or pain rating on the first day following discharge (ps>.05). For those who were re-admitted, all had formal accommodations in school (504 Plan or IEP) and reported having a trusting adult at school to help them in their return. Some (N=2 of 5 youth who were re-admitted) reported having a conversation with the medical team prior to discharge about returning to school. Conclusions: Families had excellent response rates, demonstrating feasibility of daily monitoring to assess school return following a pain-related SCD admission. While all youth returned to school, most had variable attendance after initial re-entry, suggesting continued challenges with pain and school functioning. Approximately a third of youth were re-admitted for pain during the monitoring period, in line with prior estimates of re-admission rates. Descriptively, variable attenders and those who were ultimately re-admitted went back to school 1-1.5 days later compared to those with consistent attendance. Though not statistically significant, delaying the return to school likely poses risk for continued pain-related functional impairment. Protectively, youth and families indicated having school support, though more nuanced understanding of support related to re-entry following discharge is needed. These findings highlight a significant need for intervention development specifically aimed at supporting and maintaining school re-entry following a pain-related admission for youth with SCD that involves collaborative efforts between families, the medical team, and school teams.