Quality-of-Care Indicators for Infantile Spasms
JOURNAL OF CHILD NEUROLOGY
2013; 28 (1): 13-20
Medical Documentation in the Electronic Era
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
2012; 308 (20): 2091-2092
Integrating Technology Into Health Care What Will It Take?
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
2012; 307 (6): 569-570
A Proposed Framework for Understanding the Forces behind Legislation of Universal Health InsuranceuLessons from Ten Countries
HEALTH SERVICES RESEARCH
2011; 46 (6): 2101-2118
We developed a comprehensive set of quality-of-care indicators for the management of children with infantile spasms in the United States, encompassing evaluation, diagnosis, treatment, and prevention and management of side effects and comorbidities. The indicators were developed using the RAND/UCLA Modified Delphi Method. After a focused review of the literature and guidelines by the study team, an expert panel (nominated by leaders of Child Neurology Society, American Epilepsy Society, and National Institute for Neurologic Disorders) rated the draft indicators anonymously, met face-to-face to discuss each indicator, and rerated the revised indicators on validity, feasibility, and importance. The panel recommended 21 indicators, of which 8 were identified as most likely to have a large positive impact on improving quality of life and/or health outcomes for children with infantile spasms. The proposed indicators can be used to assess and document variations and gaps in quality-of-care and inform future research and quality improvement interventions.
View details for DOI 10.1177/0883073812443590
View details for Web of Science ID 000312693500002
View details for PubMedID 22566712
Quality-of-Care Indicators for Children With Sickle Cell Disease
2011; 128 (3): 484-493
To understand the forces propelling countries to legislate universal health insurance. DATA SOURCE/STUDY DESIGN: Descriptive review and exploratory synthesis of historic data on economic, geographic, socio-demographic, and political factors.We searched under "insurance, health" on MEDLINE and Google Scholar, and we reviewed relevant books and articles via a snowball approach.Ten countries with universal health insurance were studied. For the five countries that passed final universal insurance laws prior to 1958, we found that two forces of "historical context" (i.e., social solidarity and historic patterns), one "ongoing dynamic force" (political pressures), and "one uniqueness of the moment" force (legislative permissiveness) played a major role. For the five countries that passed final legislation between 1967 and 2010, the predominant factors were two "ongoing dynamic forces" (economic pressures and political pressures) and one "uniqueness of the moment" force (leadership). In general, countries in the former group made steady progress, whereas those in the latter group progressed in abrupt leaps.The lessons of more recent successes-almost all of which were achieved via abrupt leaps-strongly indicate the importance of leadership in taking advantage of generalized economic and political pressures to achieve universal health insurance.
View details for DOI 10.1111/j.1475-6773.2011.01320.x
View details for Web of Science ID 000297244200005
View details for PubMedID 22092227
Payment Reform for Safety-Net Institutions -- Improving Quality and Outcomes.
NEW ENGLAND JOURNAL OF MEDICINE
2009; 361 (19): 1821-1823
Improving Preterm Ophthalmologic Care in the Era of Accountable Care Organizations
ARCHIVES OF OPHTHALMOLOGY
2012; 130 (11): 1433-1440
To develop a set of quality-of-care indicators for the management of children with sickle cell disease (SCD) who are cared for in a variety of settings by addressing the broad spectrum of complications relevant to their illness.We used the Rand/University of California Los Angeles appropriateness method, a modified Delphi method, to develop the indicators. The process included a comprehensive literature review with ratings of the evidence and 2 rounds of anonymous ratings by an expert panel (nominated by leaders of various US academic societies and the National Heart, Lung, and Blood Institute). The panelists met face-to-face to discuss each indicator in between the 2 rounds.The panel recommended 41 indicators that cover 18 topics; 17 indicators described routine health care maintenance, 15 described acute or subacute care, and 9 described chronic care. The panel identified 8 indicators most likely to have a large positive effect on improving quality of life and/or health outcomes for children with SCD, which covered 6 topics: timely assessment and treatment of pain and fever; comprehensive planning; penicillin prophylaxis; transfusion; and the transition to adult care.Children with SCD are at risk for serious morbidities and early mortality, yet efforts to assess and improve the quality of their care have been limited compared with other chronic childhood conditions. This set of 41 indicators can be used to assess quality of care and provide a starting point for quality-improvement efforts.
View details for DOI 10.1542/peds.2010-1791
View details for Web of Science ID 000295406100043
View details for PubMedID 21844055
Maternal note-taking and infant care: a pilot randomised controlled trial
ARCHIVES OF DISEASE IN CHILDHOOD
2012; 97 (10): 916-918
OBJECTIVES To understand retinopathy of prematurity (ROP) follow-up care for preterm very low-birth-weight infants (VLBW; <1500 g) in the context of the chronic care model and identify opportunities for improvement under accountable care organizations. METHODS We conducted focus groups and interviews with parents (N = 47) of VLBW infants and interviews with neonatal intensive care unit and ophthalmologic providers (N = 28) at 6 sites in Massachusetts and South Carolina. Themes are reported according to consolidated criteria for reporting qualitative research guidelines. RESULTS Respondents perceived that legal liability and low reimbursement contributed to shortages of ROP providers. Some neonatal intensive care units offered subsidies to attract ophthalmologic providers or delayed transfers to institutions that could not provide ROP examinations and/or treatment. Sites used variable practices for coordinating ROP care. Even at sites with a tracking database and a dedicated ROP coordinator, significant time was required to ensure that examinations and treatment occurred as scheduled. Parents' ability to manage their children's health care was limited by parental understanding of ROP, feeling overwhelmed by the infant's care, and unmet needs for resources to address social stressors. CONCLUSIONS Under accountable care organizations, hospitals and ophthalmology practices should share responsibility for ensuring coordinated ROP care to mitigate liability concerns. To promote integrated care, reimbursement for ROP care should be bundled to include screening, diagnosis, treatment, and appropriate follow-up. Clinical information systems should be enhanced to increase efficiency and limit lapses in care. Self-management tools and connections to community resources could help promote families' attendance of follow-up appointments.
View details for DOI 10.1001/archophthalmol.2012.1890
View details for Web of Science ID 000310986700009
View details for PubMedID 22777426
Hemoglobinopathy Learning Collaborative: Using Quality Improvement (QI) to Achieve Equity in Health Care Quality, Coordination, and Outcomes for Sickle Cell Disease
JOURNAL OF HEALTH CARE FOR THE POOR AND UNDERSERVED
2012; 23 (3): 34-48
A pilot randomised controlled trial was conducted with postpartum mothers to assess the feasibility and impact of note-taking during newborn teaching. Controls received standard teaching; the intervention group received pen and paper to take notes. Subjects were called 2 days post-discharge to assess infant sleep position, breastfeeding, car seat use, satisfaction and information recall.126 mothers were randomised. There was a consistent trend that intervention subjects were more likely to report infant supine sleep position (88% vs 78%, relative risks (RR) 1.13; 95% CI 0.95 to 1.34), breastfeeding (96% vs 86%, RR 1.11; 95% CI 0.99 to 1.25) and correct car seat use (98% vs 87%, RR 1.12; 95% CI 1.00 to 1.25). Satisfaction and information recall did not differ. Among first-time mothers, intervention subjects were significantly more likely to report infant supine sleep position (95% vs 65%, RR 1.46; 95% CI 1.06 to 2.00).Maternal note-taking is feasible and potentially efficacious in promoting desirable infant care.
View details for DOI 10.1136/archdischild-2012-302289
View details for Web of Science ID 000309056100018
View details for PubMedID 22806235
Management of Children With Sickle Cell Disease: A Comprehensive Review of the Literature
2011; 128 (6): E1552-E1574
Care and outcomes for individuals living with sickle cell disease (SCD) vary across institutions and communities. The Hemoglobinopathy Learning Collaborative (HLC) seeks to improve outcomes across the life course through improvement science. Faculty identified five key drivers of improved outcomes: a strong community network; knowledgeable, proactive individuals, families and providers; reliable identification and follow-up; seamless co-management between primary and specialty care; and appropriate treatment for acute episodes. Using a modified Delphi process, we selected improvement measures aligned with the drivers. Data are collected via a Web-based system linked to a reporting portal. Participating teams include consumers, community organizations and primary and specialty care providers. This commentary reviews the context of SCD in the U.S.; describes the framework, measures, and technology infrastructure already created for the HLC; reports on the early experience of teams; highlights the initiative's challenges and opportunities; and reflects on its implications in the setting of health reform.
View details for Web of Science ID 000307413700007
View details for PubMedID 22864486
Communication of Urgent Public Health Messages to Urban Populations: Lessons From the Massachusetts Water Main Break
DISASTER MEDICINE AND PUBLIC HEALTH PREPAREDNESS
2011; 5 (3): 235-241
Sickle cell disease (SCD) affects 70 000 to 100 000 people in the United States, and 2000 infants are born with the disease each year. The purpose of this study was to review the quality of the literature for preventive interventions and treatment of complications for children with SCD to facilitate the use of evidence-based medicine in clinical practice and identify areas in need of additional research.We searched the Ovid Medline database and the Cochrane Library for articles published between January 1995 and April 2010 for English-language abstracts on 28 topics thought to be important for the care of children with SCD. We also added pertinent references cited by studies identified in our search. Each abstract was reviewed independently by 2 authors. Data from articles retrieved for full review were abstracted by using a common form.There were 3188 abstracts screened, and 321 articles underwent full review. Twenty-six articles (<1% of abstracts initially screened), which consisted of 25 randomized controlled trials and 1 meta-analysis, were rated as having level I evidence. Eighteen of the 28 topics selected for this review did not have level I evidence studies published. The management and prevention of pain episodes accounted for more than one-third of the level I studies.Although significant strides have been made in the care of children with SCD in the past 2 decades, more research needs to be performed, especially for acute events associated with SCD, to ensure that the health and well-being of children with SCD continues to improve.
View details for DOI 10.1542/peds.2010-3686
View details for Web of Science ID 000298131400023
View details for PubMedID 22123880
Translating scientific advances to improved outcomes for children with sickle cell disease: a timely opportunity.
Pediatric blood & cancer
2011; 56 (7): 1005-1008
To study when and how an urgent public health message about a boil-water order reached an urban population after the Massachusetts water main break.In-person surveys were conducted in waiting areas of clinics and emergency departments at a large urban safety net hospital within 1 week of the event.Of 533 respondents, 97% were aware of the order; 34% of those who lived in affected cities or towns were potentially exposed to contaminated water. Among those who were aware, 98% took action. Respondents first received the message through word of mouth (33%), television (25%), cellular telephone calls (20%), landline calls (10%), and other modes of communication (12%). In multivariate analyses, foreign-born respondents and those who lived outside the city of Boston had a higher risk of exposure to contaminated water. New modes (eg, cellular telephones) were used more commonly by females and younger individuals (ages 18 to 34). Individuals who did not speak English at home were more likely to receive the message through their personal networks.Given the increasing prevalence of cellular telephone use, public officials should encourage residents to register landline and cellular telephone for emergency alerts and must develop creative ways to reach immigrants and non-English-speaking groups quickly via personal networks.
View details for Web of Science ID 000296362300012
View details for PubMedID 22003141
Communication of positive newborn screening results for sickle cell disease and sickle cell trait: Variation across states
AMERICAN JOURNAL OF MEDICAL GENETICS PART C-SEMINARS IN MEDICAL GENETICS
2008; 148C (1): 15-22
Despite the recent advances made in the care of children with sickle cell disease (SCD), premature mortality, especially among older children and young adults, remains a hallmark of this disease. The lack of survival gains highlights the translational gap of implementing innovations found efficacious in the controlled trial setting into routine clinical practice. Health services research (HSR) examines the most effective ways to finance, organize, and deliver high quality care in an equitable manner. To date, HSR has been underutilized as a means to improve the outcomes for children with SCD. Emerging national priorities in health care delivery, new sources of funding, and evolving electronic data collection systems for patients with SCD have provided a unique opportunity to overcome the translational gap in pediatric SCD. The purpose of this article is to provide a comprehensive HSR agenda to create patient-specific evidence of clinical effectiveness for interventions used in the routine care setting, understand the barriers faced by clinicians to providing high quality care, assess and improve the interactions of patients with the health care system, and measure the quality of care delivered to increase survival for all children and young adults with SCD.
View details for DOI 10.1002/pbc.23059
View details for PubMedID 21488152
In the US, all states and the District of Columbia have universal newborn screening (NBS) programs for sickle cell disease (SCD), which also identify sickle cell trait (trait). In this project, we surveyed follow-up coordinators, including one in the District of Columbia and two in Georgia, about protocols for stakeholder notification for SCD and trait. The primary outcomes were total number and type of stakeholder informed of a positive screen. We received 52 completed surveys (100% response). Primary care providers (PCPs) (100%), hematologists (81%), hospitals (73%), and families (40%) were the most commonly notified stakeholders of positive SCD screens, while PCPs (88%), hospitals (63%), and families (37%) were most commonly notified for trait. On average, 3.4 stakeholders were notified for a positive screening for SCD, compared to 2.4 stakeholders for sickle cell trait (P < 0.001). In multivariate analyses for SCD, we found a 2.9% increase in stakeholders notified for each additional year of universal screening mandated in a state (95% CI: 1.4-4.4%). For trait, we found an 8.5% increase in stakeholders notified for each additional follow-up staff (95% CI: 1.3-15.7%), and a 1.3% increase for each additional percent of black births in the state (95% CI: 0.1-2.5%). Wide variation exists in stakeholder notification by NBS programs of positive screenings for SCD and trait. This variation may alter the effectiveness of NBS programs by location of birth.
View details for DOI 10.1002/ajmg.c.30160
View details for Web of Science ID 000253482500003
View details for PubMedID 18200513