Sylvia Torres

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 childrens hospital. Outcomes assessed included asthma symptom and attack frequency; missed school and parental work; asthma ED visits and hospitalizations; severity of illness; and asthma specialty care. Results. Of 648 children assessed, 220 were eligible. The mean age was 7 years; 68% were poor, 83% had Medicaid, 84% were African-American, and 16% were Latino. Sixty-eight percent of children were not in excellent/very good health, 73% had persistent asthma (moderate/severe = 52%), and only 44% had asthma care plans. The mean number of asthma attacks in the past year was 12, and of monthly daytime and nighttime asthma symptoms, is 12 and 12, respectively. The mean annual number of asthma doctor visits was 6; of ED asthma visits, 3; hospitalizations, 1; missed school days, 7; and missed parent work days, 6. Eighty-three percent of children have no asthma specialist, and 62% use EDs as the usual asthma care source. Poor children were less likely than the non-poor to have asthma specialists (13 vs. 26%; p < 0.03). African-Americans were more likely than Latinos to use EDs for usual asthma care (68% vs. 44%; p < 0.01). In multivariable analyses, poverty was associated with greater odds and having an asthma care plan with lower odds of an asthma attack in the past year; poverty also was associated with half the odds of having an asthma specialist. African-American children were significantly more likely to report the ED as the usual source of asthma care, and having an asthma specialist and male gender were associated with greater odds of having an asthma care plan. Conclusions. Urban minority children with asthma average 1 asthma symptom daily, 1 exacerbation monthly, and 7 missed school days, 6 missed parental work days, 3 ED visits, and 1 hospitalization yearly; most receive their usual asthma care in EDs and have no asthma care plan or asthma specialist. Urban minority asthmatic children need interventions to reduce morbidity and improve access to specialists and asthma care plans, especially among the poor and African-Americans.

PedsQL™ multidimensional fatigue scale in sickle cell disease: Feasibility, reliability, and validity

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.

PedsQL™ sickle cell disease module: Feasibility, reliability, and validity†

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.

PedsQL™ sickle cell disease module

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.

Development of the PedsQL™ sickle cell disease module items: qualitative methods

PurposeThe 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).MethodsThe iterative process included multiphase qualitative methodology. A literature review on SCD was conducted to generate domains of interest for the individual in-depth interviews. Ten healthcare experts with clinical experience in SCD participated in the development of the conceptual framework. A total of 13 pediatric patients with SCD ages 5–18 and 18 parents of patients ages 2–18 participated in the individual in-depth interviews. A total of 33 pediatric patients with SCD ages 5–18 and 39 parents of patients ages 2–18 participated in individually conducted cognitive interviews that included both think aloud and cognitive debriefing techniques to assess the interpretability and readability of the item stems.ResultsSix domains were derived from the qualitative methods involving patient/parent interviews and expert opinion, with content saturation achieved, resulting in 48 items. The six domains consisted of items measuring Pain Intensity/Location (9 items), Pain Interference (11 items), Worry (7 items), Emotions (3 items), Disease Symptoms/Treatment, (12 items), and Communication (6 items).ConclusionsQualitative methods involving pediatric patients and parents in the item development process support the content validity for the PedsQL™ SCD Module. The PedsQL™ SCD Module is now undergoing national multisite field testing for the psychometric validation phase of instrument development.

Assessment of communication modes in patients and families with sickle cell disease.

To the Editor: Sickle cell disease is a chronic disease that requires long-term care, including patient self-management. For almost all patients with sickle cell disease, it is recommended that they have regular healthcare visits to manage their disease and that they follow recommended treatment plans [1]. Numerous studies have been done for other chronic disorders that look at the impact of utilizing Internet and cell phones on self-management of their disease [2–6]. Since it is known that the sickle cell disease population is drawn from a very impoverished group, these patients may lack the resources to manage their care via electronic communication [7]. Thus, the objectives of our study were twofold: (1) to determine if our patients have electronic access and use the Internet and/or cell phones for communication and (2) to determine if patients prefer to receive communications from the sickle cell center regarding appointments/other reminders via these routes. We conducted a cross-sectional survey design study using a convenience sample of patients with sickle cell disease who were seen in either our sickle cell disease clinic or the emergency department. One hundred and one parents, 55 children 8 years of age and older, and two who did not indicate who they were, completed a questionnaire on electronic connectivity. Specifically, the questionnaire inquired about cell phone use and internet access as well as the preferred method of contact for appointment reminders. The questionnaire was anonymous and consent was implied from those that completed the survey. The Institutional Review Board of our institution approved the study. Approximately 84% of participants stated they have a cell phone. Of those, approximately 91% use text messaging on their cell phone to communicate with others. Of the approximately 80% of the participants with Internet access, the most common access was via home, work or school (n 1⁄4 113, 77.4%). About half of the patients (56.3%) use email to keep in touch with family and friends. Slightly more than half of the respondents (58.4%) reported using social networking sites with Facebook being the most common site used (60%). Lastly, nearly all patients preferred appointment reminders be received via cell phone/ telephone message or text message with the majority favoring cell phone/texting. Our study provides new evidence that the majority of respondents surveyed have cell phone and/or internet access. Furthermore, most of our respondents use text messaging to communicate, which has been found to be a useful tool in chronic disease management. These data support the concept of utilizing cell phone technology including text messaging to communicate with our patients and families. Because the majority of our patients reported access to cell phones and the internet, these data also support that electronic interventions designed to increase patient self-management would be feasible. Future work utilizing these modalities of communication has the potential to contribute to improved disease self-management and patient adherence.

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. At 1 to 12 months, infants with SCD displayed lower Physical HRQL than healthy infants, but better HRQL than chronically ill infants. By 13 to 24 months, infants with SCD had worse HRQL in all areas than healthy infants and worse Physical and Total HRQL than acutely ill infants. Compared with chronically ill infants in this age group, infants with SCD had similar Physical HRQL and better Psychosocial and Total HRQL. By 13 to 24 months, a greater proportion of infants with SCD had impaired Physical and Total HRQL compared with infants aged 1 to 12 months. All differences were significant at the (P<0.05) level. Impaired HRQL can be detected in infants with SCD.