Health-related Quality of Life in Infants With Sickle Cell Disease.

Using historical cohorts of healthy, acutely ill, and chronically ill infants for comparison, we sought to determine whether infants with sickle cell disease (SCD) have impaired health-related quality of life (HRQL). We conducted a cross-sectional study at 2 sites: the Medical College of Wisconsin/Children's of Wisconsin and the University of Alabama School of Medicine/Children's of Alabama. Parents of 90 infants with SCD completed the PedsQL Infant Module corresponding to their infant's age (1 to 12 mo or 13 to 24 mo) during a regular clinic visit.

PedsQL™ Multidimensional Fatigue Scale in sickle cell disease: feasibility, reliability, and validity.

Background: Sickle cell disease (SCD) is an inherited blood disorder characterized by a chronic hemolytic anemia that can contribute to fatigue and global cognitive impairment in patients. The study objective was to report on the feasibility, reliability, and validity of the PedsQL™ Multidimensional Fatigue Scale in SCD for pediatric patient self-report ages 5-18 years and parent proxy-report for ages 2-18 years.

Procedure: This was a cross-sectional multi-site study whereby 240 pediatric patients with SCD and 303 parents completed the 18-item PedsQL™ Multidimensional Fatigue Scale.

No association of the HLA-DQ alleles with myasthenia gravis in Cuban patients.

Myasthenia gravis (MG) is a neuromuscular disorder characterized by fatigability and weakness of striated muscles. Its association with HLA molecules is well known and varies depending on age, sex and the ethnicity of the patients. A case-control study was performed in 61 Cuban patients and 81 controls using polymerase chain reaction and sequence-specific primers of the HLA-DQA1/B1 alleles.

PedsQL™ sickle cell disease module: feasibility, reliability, and validity.

Background: Sickle cell disease (SCD) is an inherited chronic disease that is characterized by complications such as recurrent painful vaso-occlusive events that require frequent hospitalizations and contribute to early mortality. The objective of the study was to report on the initial measurement properties of the new PedsQL™ SCD Module for pediatric patient self-report ages 5-18 years and parent proxy-report for ages 2-18 years.

Procedure: The 43-item PedsQL™ SCD Module was completed in a multisite study by 243 pediatric patients with SCD and 313 parents.

HLA-B27 and clinical features of acute anterior uveitis in Cuba.

Background: There are few data about the epidemiology of acute anterior uveitis (AAU) from Latin America. In Cuba, the genetic admixture of the population could modify the HLA-B27-AAU association. In this study, the authors compared the distribution of the HLA-B27 allele in patients and controls and described some clinical outcomes.

Development of the PedsQL™ Sickle Cell Disease Module items: qualitative methods.

Purpose: The objective of this qualitative study was to develop the items and support the content validity of the PedsQL™ Sickle Cell Disease Module for pediatric patients with sickle cell disease (SCD).

Methods: The iterative process included multiphase qualitative methodology. A literature review on SCD was conducted to generate domains of interest for the individual in-depth interviews.

Off-season physiological profiles of elite National Collegiate Athletic Association Division III male soccer players.

The purpose of this study was to develop a profile of soccer-related fitness parameters on elite National Collegiate Athletic Association (NCAA) Division III male soccer players during the off-season. Sixteen underclassmen from a recent NCAA Division III national championship soccer team completed a series of tests across 3 separate occasions over a 15-day period, with adequate recovery time between sessions to eliminate any carryover effect. Physiological parameters measured included aerobic endurance, anaerobic power and capacity, jumping power, agility, hamstring flexibility, and body composition.

Improving asthma outcomes in minority children: a randomized, controlled trial of parent mentors.

Objective: Because asthma disproportionately affects minorities, we evaluated the effects of parent mentors (PMs) on asthma outcomes in minority children.

Methods: This randomized, controlled trial allocated minority asthmatic children to the PM intervention or traditional asthma care. Intervention families were assigned PMs (experienced parents of asthmatic children who received specialized training).

Urban minority children with asthma: substantial morbidity, compromised quality and access to specialists, and the importance of poverty and specialty care.

Background: Asthma disproportionately affects minorities, but not enough is known about morbidity and specialist access in asthmatic minority children.

Objective: To examine asthma morbidity and access to specialty care in urban minority children.

Methods: A consecutive series was recruited in 2004-2007 of urban minority children 2 to 18 years old seen for asthma in four emergency departments (EDs) or admitted to a children's hospital.

Access to hospital interpreter services for limited English proficient patients in New Jersey: a statewide evaluation.

Context/objectives: We surveyed New Jersey (NJ) hospitals to assess current language services and identify policy recommendations on meeting limited English proficiency (LEP) patients' needs.

Methods: Survey with 37 questions regarding hospital/patient features, interpreter services, and resources/policies needed to provide quality interpreter services.

Results: Sixty-seven hospitals responded (55% response rate).