C. Jason Wang

Quality-of-Care Indicators for the Neurodevelopmental Follow-up of Very Low Birth Weight Children: Results of an Expert Panel Process

OBJECTIVE. To develop a set of quality indicators for the neurodevelopmental follow-up care of very low birth weight (VLBW; <1500 g) children. METHODS. We reviewed the scientific literature on predictors of neurodevelopmental outcomes for VLBW children and the clinical practice guidelines relevant to their care after hospital discharge. An expert panel with members nominated by the American Academy of Pediatrics, the National Institute of Child Health and Human Development, the Vermont Oxford Network, and the California Childrens Service was convened. We used a modified Delphi method to evaluate and select the quality-of-care indicators. RESULTS. The panel recommended a total of 70 indicators in 5 postdischarge follow-up areas: general care; physical health; vision, hearing, speech, and language; developmental and behavioral assessment; and psychosocial issues. Of these, 58 (83%) indicators were in preventive care, 5 (7%) were in acute care, and 7 (10%) were in chronic care. CONCLUSION. The quality indicators cover follow-up care for VLBW infants with various medical conditions. Given the elevated rates of long-term neurodevelopmental disabilities and the potential impact of poor health care, this new set of indicators provides an opportunity to assess and monitor the quality of follow-up care with the ultimate aim of improving the quality of care for this high-risk population.

Perceptions of Standards-based Electronic Prescribing Systems as Implemented in Outpatient Primary Care: A Physician Survey

OBJECTIVE To compare the experiences of e-prescribing users and nonusers regarding prescription safety and workload and to assess the use of information from two e-prescribing standards (for medication history and formulary and benefit information), as they are implemented. DESIGN Cross-sectional survey of physicians who either had installed or were awaiting installation of one of two commercial e-prescribing systems. MEASUREMENTS Perceptions about medication history and formulary and benefit information among all respondents, and among e-prescribing users, experiences with system usability, job performance impact, and amount of e-prescribing. RESULTS Of 395 eligible physicians, 228 (58%) completed the survey. E-prescribers (n = 139) were more likely than non-e-prescribers (n = 89) to perceive that they could identify clinically important drug-drug interactions (83 versus 67%, p = 0.004) but not that they could identify prescriptions from other providers (65 versus 60%, p = 0.49). They also perceived no significant difference in calls about drug coverage problems (76 versus 71% reported getting 10 or fewer such calls per week; p = 0.43). Most e-prescribers reported high satisfaction with their systems, but 17% had stopped using the system and another 46% said they sometimes reverted to handwriting for prescriptions that they could write electronically. The volume of e-prescribing was correlated with perceptions that it enhanced job performance, whereas quitting was associated with perceptions of poor usability. CONCLUSIONS E-prescribing users reported patient safety benefits but they did not perceive the enhanced benefits expected from using standardized medication history or formulary and benefit information. Additional work is needed for these standards to have the desired effects.

Variation in Electronic Prescribing Implementation Among Twelve Ambulatory Practices

BackgroundElectronic prescribing has been advocated as an important tool for improving the safety and quality of medication use in ambulatory settings. However, widespread adoption of e-prescribing in ambulatory settings has yet to be realized. The determinants of successful implementation and use in these settings are not well understood.ObjectiveTo describe the practice characteristics associated with implementation and use of e-prescribing in ambulatory settings.DesignMulti-method qualitative case study of ambulatory practices before and after e-prescribing implementation.ParticipantsSixteen physicians and 31 staff members working in 12 practices scheduled for implementation of an e-prescribing program and purposively sampled to ensure a mix of practice size and physician specialty.MeasurementsField researchers used observational and interview techniques to collect data on prescription-related clinical workflow, information technology experience, and expectations.ResultsFive practices fully implemented e-prescribing, 3 installed but with only some prescribers or staff members using the program, 2 installed and then discontinued use, 2 failed to install. Compared to practice members in other groups, members of successful practices exhibited greater familiarity with the capabilities of health information technologies and had more modest expectations about the benefits likely to accrue from e-prescribing. Members of unsuccessful practices reported limited understanding of e-prescribing capabilities, expected that the program would increase the speed of clinical care and reported difficulties with technical aspects of the implementation and insufficient technical support.ConclusionsPractice leaders should plan implementation carefully, ensuring that practice members prepare for the effective integration of this technology into clinical workflow.

Adherence to Quality Indicators and Survival in Patients With Breast Cancer

Background:International initiatives increasingly advocate physician adherence to clinical protocols that have been shown to improve outcomes, yet the process-outcome relationship for adhering to breast cancer care protocol is unknown. Objective:This study explores whether 100% adherence to a set of quality indicators applied to individuals with breast cancer is associated with better survival. Research Design and Subjects:Ten quality indicators (4 diagnosis-related and 6 treatment-related indicators) were used to measure the quality of care in 1378 breast cancer patients treated from 1995 to 2001. Adherence to each indicator was based on the number of procedures performed divided by the number of patients eligible for that procedure. The main analysis of adherence was dichotomous (ie, 100% adherence vs. <100% adherence). Measures:The outcome measures studied were 5-year overall survival and progression-free survival, calculated using the Kaplan-Meier method. The Coxs proportional hazard regression model was used for univariate and multivariate analyses. Results:Most patients received care that demonstrated good adherence to the quality indicators. Multivariate analysis revealed that 100% adherence to entire set of quality indicators was significantly associated with better overall survival [hazard ratio (HR): 0.46; 95% confidence interval (CI): 0.33–0.63] and progression-free survival (HR 0.51; 95% CI, 0.39–0.67). One hundred percent adherence to treatment indicators alone was also associated with statistically significant improvements in overall and progression-free survivals. Conclusions:Our study strongly supports that 100% adherence to evidence supported quality-of-care indicators is associated with better survival rates for breast cancer patients and should be a priority for practitioners.

Communication of Positive Newborn Screening Results for Sickle Cell Disease and Sickle Cell Trait: Variation Across States

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.

Pasteurized Human Donor Milk Use among US Level 3 Neonatal Intensive Care Units

Background: Pasteurized human donor milk (DM) is recommended by the World Health Organization and American Academy of Pediatrics for preterm infants when mother’s own milk is unavailable, yet the extent and predictors of use and criteria for use in US neonatal intensive care units (NICUs) are unknown. Objective: This study aimed to evaluate current DM use in US level 3 NICUs and predictors and criteria of use. Methods: We sent mail surveys to 302 US level 3 NICU directors. We used multivariable logistic regression to analyze predictors of DM use. Results: Survey response rate was 60%, and 76 of 182 (42%) directors reported DM use. Among DM users, 30% have used DM < 2 years and 55% for 2 to 5 years. Among nonusers, 63% were uncertain of turnaround time when ordering DM, 36% were unclear what guidelines milk banks followed, and 31% were unsure of parent receptiveness. In multivariate analyses, > 800 annual admissions (odds ratio [OR], 4.11; 95% confidence interval [CI], 1.43-11.82; reference ≤ 400 admissions) and location in the Midwest (OR, 3.02; 95% CI, 1.17-7.76) and West (OR, 6.33; 95% CI, 2.28-15.57; reference Northeast) were positively associated with DM use; safety-net hospitals (> 75% Medicaid insurance) were negatively associated (OR, 0.35; 95% CI, 0.14-0.89). Conclusion: Pasteurized human donor milk use is rapidly emerging among US level 3 NICUs. Larger NICUs and those in the West and Midwest were more likely to use DM, while safety-net hospitals were less likely to use DM. Lack of knowledge by medical directors of accessibility, safety, and parental receptiveness may be barriers to DM use.

Integrating Technology Into Health Care: What Will It Take?

TECHNOLOGY IS IN PART RESPONSIBLE FOR INCREASing health care costs; however, new technology platforms, especially those from consumer electronics, have the potential to both decrease costs and increase the efficiency and quality of care. The benefits of electronic health records (EHRs) are well documented, yet their introduction has been greeted with reluctance and sometimes resistance. Indeed, current usage rates are quite low. Similarly, personalized health records (PHRs) for consumers, such as Google Health and Microsoft HealthVault, also have not achieved their predicted uptake. As such, Google shut down Google Health as of January 1, 2012, because “it is not having the broad impact that we hoped it would. . . . We haven’t found a way to translate that limited usage into widespread adoption in the daily health routines of millions of people.” In addition to studying health information technology in its current state, what future conditions will be necessary to promote widespread adoption and use? To fit into the lives of clinicians, technology must optimize the 3 major components of a clinician’s time: time spent with patients, time spent on documentation, and time spent on continuous learning. Similarly, to fit into the lives of patients, technology must help patients do the jobs that they perceive as high priority in their lives. For example, many patients perceive financial health and other concerns as more pressing jobs to be done than physical health. To date, neither EHRs, controlled by clinicians, nor PHRs, controlled by patients, have been designed to integrate satisfactorily into the lives of users. Many existing EHRs have unwieldy designs. Although the user interface has shifted from a 3-dimensional paper chart to a limited 2-dimensional screen, data are still organized by what a clinician would write on a paper chart to capitalize on the user’s experiential knowledge. Most EHRs force clinicians to navigate through a maze before getting to the desired data field. As such, documentation often is more time consuming with EHRs than with paper records, which means that clinicians have less time for patient interaction or for continuous learning. Moreover, existing EHRs offer little innovation in output. Most available output is similar to paper records—a large amount of information in linear text format—and offers little connection, saliency, clinical insight, or prioritization to the user. Few attempts have been made to generate intuitive and useful trending of patient data, such as weight and height. Similarly, laboratory data and tests are populated into EHRs without linkages to the original test order. As such, data in current EHRs are not easily searchable or retrievable at the point of care, or even for qualityrelated data abstraction. Furthermore, the electronic files are logged and filed like paper records. Reviewing a patient’s files can be painstaking, with important clinical information often hidden in the sea of data. For most clinicians, retrieving digestible and up-to-date information about the patient from the EHR is difficult in the time allotted for a clinic visit. Yet, should anything go wrong with the patient, the EHR can be sieved through by others, such as medical informaticians or attorneys. Thus, EHRs have become expensive versions of paper logs, with increased liability for practitioners and health care organizations but without concurrent improvements in the efficiency of care. In this current form, there is little return on investing in EHRs. Costs are passed down to health care organizations in terms of dollars, clinicians in terms of time, and consumers in terms of face-time with clinicians, with few improvements in utility. Large EHR systems resemble mainframe computers, for which the cost of purchasing, implementing, and maintaining a system far exceeds the value it currently provides. It is common for major hospital systems to spend half a billion dollars on EHRs that users still find unhelpful to their day-to-day practices; for smaller organizations, investment in such expensive systems is prohibitive. Similarly, as therapeutic advances reach patients, PHRs are expected to promote shared decision making and patient engagement in the era of consumer technology. Motivating patients to adhere to recommended treatment regimens is the “the last mile” of health care delivery. Volpp and Das have suggested that 40% of premature deaths in the United States are attributable to individual health-

Management of Children With Sickle Cell Disease: A Comprehensive Review of the Literature

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Factors Influencing the Enrollment of Eligible Extremely-Low-Birth-Weight Children in the Part C Early Intervention Program

OBJECTIVE To determine whether eligible extremely-low-birth-weight children (<1000 g) were enrolled in the federally enacted, state-coordinated Early Intervention (EI) program intended to help children with developmental delay or disability regardless of parental income, and the factors associated with enrollment. METHODS Retrospective analysis of 884 EI-eligible ELBW children born in South Carolina with birth weight 401 to 999 g, gestation > or =24 weeks, and survival for the first 120 days of life. We created a linked data set with data from Early Intervention (1996-2001), Vital Records (1996-1998), death certificates, and Medicaid. Each child was followed from birth to 3 years old, the program eligibility period. RESULTS A total of 54% of ELBW children were enrolled in EI at any time from birth to 36 months. Even among children ever enrolled in Medicaid (83% of all ELBW children), only 63% were enrolled in EI. Being born in a multiple gestational birth, having heavier birth weight (750 to 999 g), and having ever enrolled in Medicaid were positively associated with EI enrollment. Among Medicaid patients for whom perinatal data were available, additional risk adjustment showed that EI enrollment was more likely with birth in level 3 hospitals, birth weight 750 to 999 g, Neonatal Medical Index severity level V (most severe), and longer initial length of hospital stay. CONCLUSIONS Only about half of eligible ELBW children in South Carolina were enrolled-much lower than reported elsewhere. Efforts are needed to understand why eligible infants are not being enrolled and to develop strategies to remedy the situation.

The HIPAA conundrum in the era of mobile health and communications.

In January 2013, the US Department of Health and Human Services released the Omnibus Final Rule (Final Rule).1 The final rule significantly modified the privacy and security standards under the Health Insurance Portability and Accountability Act (HIPAA). These new regulations were driven by a perceived need to ensure the confidentiality, integrity, and security of patients’ protected health information (PHI) in electronic health records (EHRs) and other formats. The final rule addresses these concerns by expanding the scope of regulations and increasing penalties for PHI violations. The final rule was mandated by the