Assessment of Patient-Reported Health-Related Quality of Life among Hospitalized Adults with Sickle Cell Disease
Esham, Kimberly.
2018
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Abstract: Sickle 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 (PR... read moreOs) 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
vulnerable population.
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 - ID:
- 0k225p25h
- Component ID:
- tufts:25405
- To Cite:
- DCA Citation Guide EndNote
