No abstract

No abstract

Sickle cell disease (SCD) is characterized by painful vaso-occlusive crises (VOCs). Self-reported pain intensity is often assessed with the Numeric Rating Scale (NRS), whereas newer patient-reported outcome measures (PROMs) assess multidimensional pain in SCD. We describe pain experiences among hospitalized adults with VOCs, using 2 PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me). Adults with SCD hospitalized with VOCs at 2 academic centers in Boston, Massachusetts, from April 2016 to October 2017 were eligible. Participants completed the NRS and PROMs at admission and 7 days postdischarge. PROM scores were described and compared with population norms. Length of stay (LOS) and 30-day readmission rates were assessed. Forty-two (96%) of 44 eligible patients consented and completed admission assessments. Mean age was 30.2 years (standard deviation, 9.1), 60% were women, 76% were non-Hispanic black, and 64% had hemoglobin SS. Twenty-seven participants (64%) completed postdischarge assessments. Sixty percent had ≥4 VOCs in the last year. Nearly all PROMIS Global Health and ASCQ-Me scores were worse than population norms. NRS and PROMIS Global Physical Health scores improved after discharge, the latter driven principally by improvements in pain. Overall median LOS was 7 days, and 30-day readmission rate was 40.5%. Administration of PROMs among adults with SCD hospitalized for VOCs is feasible and demonstrates participants experienced recurrent, prolonged, and severe VOCs. PROMIS Global and ASCQ-Me scores indicated substantial suffering, and the striking 30-day readmission rate highlights the vulnerability of these patients.

Introduction Children with chronic respiratory insufficiency and mechanical ventilation often experience acute illnesses requiring unscheduled hospitalizations. Health-related quality of life (HRQL) may predict future healthcare utilization. Methods Participants were 30 days-22 years old with chronic respiratory insufficiency (n=120). Parent-proxies completed global HRQL and general health measures. Outcomes were total healthcare (emergency department, outpatient, inpatient) and inpatient days over six months. Adjusted negative binomial regression estimated the effects of global HRQL and general health on utilization. Results Three-quarters of children had any utilization; 32% had hospitalizations. Children with poor/fair global HRQL had 3.7 times more healthcare days than very good/excellent global HRQL. Children with poor/fair global HRQL had 6.3 times more inpatient days than very good/excellent global HRQL. Similar relationships existed between general health and utilization. Discussion HRQL was associated with healthcare and inpatient days. Clinical teams can use HRQL as a marker for utilization risk, enabling potentially earlier intervention, better outcomes, and lower costs.

No abstract