Assessment of Patient-Reported Health-Related Quality of Life among Hospitalized Adults with Sickle Cell Disease
cell disease (SCD) is an inherited condition characterized by painful vaso-occlusive
(VOC) episodes that lead to poor health-related quality of life and premature mortality.
Currently, pain assessment is performed by the Numeric Rating Scale (NRS), with which
patients rate the intensity of pain from 0 (no pain) to 10 (worst imaginable pain).
Newer patient-reported outcomes (P... read moreROs) measures that assess the multidimensional impact
of pain among adults with SCD have been preliminarily validated in ambulatory
populations. This study described the VOC experience among hospitalized adults with VOC,
using two PRO tools, 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 VOC at two academic centers in New England
from April 2016-October 2017 were eligible. Participants completed PROMIS Global Health
and ASCQ-Me assessments at admission and seven days after hospital discharge. We
calculated means and standard deviations for the NRS and PRO scores. We described
feasibility in terms of proportion of assessment ascertainment. Healthcare utilization
outcomes included hospital length of stay (LOS) and 30-day readmission rates. Using
multivariable linear regression, we used sociodemographic, clinical characteristics, and
the novel PRO scores to predict hospital LOS. Forty-two of 44 eligible patients (95.5%)
consented and completed all admission assessments. The mean age was 30.2 years, 60% were
women, 76% were black, non-Hispanic, and 64% had hemoglobin SS. Twenty-seven
participants (64%) completed all assessments seven days after discharge. Seven (47%) of
the missing assessments were due to hospital readmission within one week. Sixty percent
of patients had four or more VOCs in the last 12 months. These participants were more
likely to be younger, of non-Hispanic race, have hemoglobin SS, be prescribed
hydroxyurea, and on disability. They tended to have higher pain intensity and lower
ASCQ-Me scores. All mean ASCQ-Me and PROMIS Global scores were below population norms,
with the exception of Sleep Impact. There was statistically significant improvement in
mean NRS (p<0.01) and PROMIS Physical Health (p<0.05) at seven days following
discharge. The overall 30-day readmission rate was 40.5% and mean LOS 8.5 days. The
clinical prediction model demonstrated that 29% of the variability in LOS was accounted
for by the relationship of Hb SS genotype, presence of dependent children at home, and
PROMIS Global Physical Health score. Administering PROs among adults with SCD
hospitalized for VOC is feasible and informative. Participants reported recurrent,
prolonged and severe VOCs. PROMIS and ASCQ-Me scores indicated substantial suffering as
compared to the general U.S. and outpatient SCD populations. The striking 30-day
readmission rate (40.5%) highlights that hospitalized adults with SCD are a particularly
Thesis (M.S.)--Tufts University, 2018.
Submitted to the Dept. of Clinical & Translational Science.
Advisor: Susan Parsons.
Committee: Angie Rodday, and Farzad Noubary.
Keywords: Oncology, Health sciences, and Medicine.read less