101 research outputs found
More Than Just Adolescence: Differences in Fatigue Between Youth With Cerebral Palsy and Typically Developing Peers
Objective To quantify differences in fatigue and disordered sleep between adolescents with cerebral palsy (CP) and their typically developing peers. A secondary aim was to investigate the association between fatigue and disordered sleep in adolescents with CP. Methods A convenience sample of 36 youth with CP aged 10-18 years was matched for age and sex with 36 typically developing peers. The Fatigue Impact and Severity Self-Assessment (FISSA), the Patient-Reported Outcome Measurement Information System (PROMIS) fatigue profile, and the Sleep Disturbance Scale for Children (SDSC) were collected. Results Higher fatigue was reported in participants with CP than in their typically developing peers based on the FISSA total score (mean paired difference=19.06; 99% confidence interval [CI], 6.06-32.1), the FISSA impact subscale (mean paired difference=11.19; 99% CI, 3.96-18.4), and the FISSA Management and Activity Modification subscale (mean paired difference=7.86; 99% CI, 1.1-14.6). There were no differences between groups in the PROMIS fatigue profile (mean paired difference=1.63; 99% CI, -1.57-4.83) or the SDSC total score (mean paired difference=2.71; 99% CI, -2.93-8.35). Conclusion Youth with CP experienced significantly more fatigue than their peers as assessed by a comprehensive measure that considered both general and diagnosis-specific concerns. Sleep did not differ between youth with CP and their typically developing peers. These findings underscore the need to consider the clinical management of fatigue across the lifespan of individuals with CP to prevent the associated deterioration of functional abilities
Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort.
BackgroundUnderstanding the global impact of medulloblastoma on health related quality of life (HRQL) is critical to characterizing the broad impact of this disease and realizing the benefits of modern treatments. We evaluated HRQL in an international cohort of pediatric medulloblastoma patients.MethodsSeventy-six patients were selected from 10 sites across North America, Europe, and Asia, who participated in the Medulloblastoma Advanced Genomics International Consortium (MAGIC). The Health Utilities Index (HUI) was administered to patients and/or parents at each site. Responses were used to determine overall HRQL and attributes (ie specific subdomains). The impact of various demographic and medical variables on HRQL was considered-including molecular subgroup.ResultsThe majority of patients reported having moderate or severe overall burden of morbidity for both the HUI2 and HUI3 (HUI2 = 60%; HUI3 = 72.1%) when proxy-assessed. Self-care in the HUI2 was rated as higher (ie better outcome) for patients from Western versus Eastern sites, P = .02. Patients with nonmetastatic status had higher values (ie better outcomes) for the HUI3 hearing, HUI3 pain, and HUI2 pain, all P < .05. Patients treated with a gross total resection also had better outcomes for the HUI3 hearing (P = .04). However, those who underwent a gross total resection reported having worse outcomes on the HUI3 vision (P = .02). No differences in HRQL were evident as a function of subgroup.ConclusionsBy examining an international sample of survivors, we characterized the worldwide impact of medulloblastoma. This is a critical first step in developing global standards for evaluating long-term outcomes
Early Spectroscopy and Dense Circumstellar Medium Interaction in SN~2023ixf
We present the optical spectroscopic evolution of SN~2023ixf seen in
sub-night cadence spectra from 1.18 to 14 days after explosion. We identify
high-ionization emission features, signatures of interaction with material
surrounding the progenitor star, that fade over the first 7 days, with rapid
evolution between spectra observed within the same night. We compare the
emission lines present and their relative strength to those of other supernovae
with early interaction, finding a close match to SN~2020pni and SN~2017ahn in
the first spectrum and SN~2014G at later epochs. To physically interpret our
observations we compare them to CMFGEN models with confined, dense
circumstellar material around a red supergiant progenitor from the literature.
We find that very few models reproduce the blended \NC{} emission lines
observed in the first few spectra and their rapid disappearance thereafter,
making this a unique diagnostic. From the best models, we find a mass-loss rate
of \mlunit{}, which far exceeds the mass-loss rate for any
steady wind, especially for a red supergiant in the initial mass range of the
detected progenitor. These mass-loss rates are, however, similar to rates
inferred for other supernovae with early circumstellar interaction. Using the
phase when the narrow emission features disappear, we calculate an outer dense
radius of circumstellar material and a mean circumstellar material density
of . This is consistent with the
lower limit on the outer radius of the circumstellar material we calculate from
the peak \Halpha{} emission flux, .Comment: Submitted to ApJ
Strong Carbon Features and a Red Early Color in the Underluminous Type Ia SN 2022xkq
We present optical, infrared, ultraviolet, and radio observations of SN
2022xkq, an underluminous fast-declining type Ia supernova (SN Ia) in NGC 1784
( Mpc), from to 180 days after explosion. The
high-cadence observations of SN 2022xkq, a photometrically transitional and
spectroscopically 91bg-like SN Ia, cover the first days and weeks following
explosion which are critical to distinguishing between explosion scenarios. The
early light curve of SN 2022xkq has a red early color and exhibits a flux
excess which is more prominent in redder bands; this is the first time such a
feature has been seen in a transitional/91bg-like SN Ia. We also present 92
optical and 19 near-infrared (NIR) spectra, beginning 0.4 days after explosion
in the optical and 2.6 days after explosion in the NIR. SN 2022xkq exhibits a
long-lived C I 1.0693 m feature which persists until 5 days post-maximum.
We also detect C II 6580 in the pre-maximum optical spectra. These
lines are evidence for unburnt carbon that is difficult to reconcile with the
double detonation of a sub-Chandrasekhar mass white dwarf. No existing
explosion model can fully explain the photometric and spectroscopic dataset of
SN 2022xkq, but the considerable breadth of the observations is ideal for
furthering our understanding of the processes which produce faint SNe Ia.Comment: 38 pages, 16 figures, accepted for publication in ApJ, the figure 15
input models and synthetic spectra are now available at
https://zenodo.org/record/837925
Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort
Background: Understanding the global impact of medulloblastoma on health related quality of life (HRQL) is critical to characterizing the broad impact of this disease and realizing the benefits of modern treatments. We evaluated HRQL in an international cohort of pediatric medulloblastoma patients. Methods: Seventy-six patients were selected from 10 sites across North America, Europe, and Asia, who participated in the Medulloblastoma Advanced Genomics International Consortium (MAGIC). The Health Utilities Index (HUI) was administered to patients and/or parents at each site. Responses were used to determine overall HRQL and attributes (ie specific subdomains). The impact of various demographic and medical variables on HRQL was considered—including molecular subgroup. Results: The majority of patients reported having moderate or severe overall burden of morbidity for both the HUI2 and HUI3 (HUI2 = 60%; HUI3 = 72.1%) when proxy-assessed. Self-care in the HUI2 was rated as higher (ie better outcome) for patients from Western versus Eastern sites, P =.02. Patients with nonmetastatic status had higher values (ie better outcomes) for the HUI3 hearing, HUI3 pain, and HUI2 pain, all P <.05. Patients treated with a gross total resection also had better outcomes for the HUI3 hearin
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