Informing parents about newborn screening.

OBJECTIVE: To evaluate current rules and regulations for educating parents about newborn screening. DESIGN: Cross-sectional survey. SAMPLE: Newborn screening program coordinators in all 50 states and the District of Columbia. MEASUREMENTS: Answers to a standardized semi-structured telephone survey in January 2004. RESULTS: Fifty programs provide standardized information about screening, and 32 of these have information available in multiple languages. Most programs (n=36) believe that parents should be informed about newborn screening as a part of prenatal care; however, none has rules or regulations requiring this. Five require documented informed consent; only one provides the consent form in a language other than English. Hospitals and birthing centers are required by many programs to educate families, including providing information (n=12), obtaining informed consent (n=5), informing parents of the right to refuse screening (n=13), and documenting refusal on institutionally developed forms (n=9). We found considerable variation in policy language across the newborn screening programs. CONCLUSIONS: The complexity of current newborn screening programs and the likelihood of expansion in the number of conditions on newborn screening panels present a unique opportunity and challenge for public health nurses to ensure that these programs are effective and that care is integrated.

Internal medicine-pediatrics physicians: their care of children versus care of adults.

Purpose To determine how practicing physicians who graduated from internal medicine-pediatrics residency programs allocate their practice time and professional activities between adult and child patients, and to investigate whether there are predictors of the extent to which a particular physician's practice is more or less focused on one or the other of these patient groups. Method In 2003, the authors mailed a questionnaire to the 1,300 generalists and 472 subspecialists who, as of 2003, had completed internal medicine-pediatrics training since the inception of the program in 1980. Results The response rate was 73% for the generalists and 65% for the subspecialists. The vast majority of the generalist physicians stated that they provide care to all ages of patients. However, the proportion of care they provided to different age groups was not uniformly distributed, with more care provided to adults than children. Both generalist and subspecialist respondents were more likely to feel better prepared by their residency training to care for adults than for children. Those who felt less well-prepared to care for children were less likely to do so in their practices (odds ratio, 0.68; 95% confidence interval, 0.48-0.96). Fifty-four percent of the subspecialists pursued subspecialty training in internal medicine only, while 38% completed a combined internal medicine-pediatrics subspecialty program. These respondents, like the generalist respondents, also were more likely to focus clinical efforts on adults than children. Fewer than half (43%) provided any care to children zero to one year of age, while 54% provided at least some care to children aged two to 11 years. Conclusions Internal medicine-pediatrics physicians are more likely to spend a majority of their clinical care focused on adults and to perceive that they stay more current in the care of adults than of children. Potential reasons for this disparity may include training issues, greater reimbursement for the care of adults, perceptions of the impact on the medical market of the demographic shifts to older adults, and employment opportunities following training. These results also demonstrate the need for a more detailed and comprehensive assessment of the adequacy of pediatrics training in these programs.

Blood lead testing among Medicaid-enrolled children in Michigan.

BACKGROUND: Federal regulations mandate that Medicaid-enrolled children be tested for lead poisoning at the age of 1 and 2 years or 3 through 5 years if not previously tested. OBJECTIVES: To measure the rate of blood lead testing among Medicaid-enrolled children in Michigan and the subsequent proportion of children with elevated lead levels and to determine factors associated with testing and elevated lead levels. METHODS: We performed a retrospective analysis of children aged 5 years or younger continuously enrolled in Michigan Medicaid during 2002. RESULTS: There were 216,578 children included in the analysis. The overall rate of blood lead testing was 19.6% (95% confidence interval [CI], 19.4-19.8) of which 8.3% (95% CI, 8.0-8.5) had a level of 10 microg/dL [0.48 micromol/L] or higher. Hispanic or nonwhite children or those living in high-risk areas for lead exposure were more likely to be tested and more likely to have an elevated blood lead level. However, 1.2% of tested children without these additional risk factors had a level of 10 microg/dL or higher. Enrollment in Medicaid managed care was associated with an increased likelihood of blood lead testing. After adjusting for other factors, those in managed care for 75% or more of their enrollment in 2002 had 1.98 (95% CI, 1.46-2.68) greater odds of being tested than those in fee-for-service for 75% or more of their enrollment. CONCLUSIONS: The rate of blood lead testing was low. Patterns suggest testing was targeted to those at highest risk, potentially leading some children with elevated blood lead levels to be missed.

Follow-up testing among children with elevated screening blood lead levels.

CONTEXT: Follow-up testing after an abnormal screening blood lead level is a key component of lead poisoning prevention. OBJECTIVES: To measure the proportion of children with elevated screening lead levels who have follow-up testing and to determine factors associated with such care. DESIGN, SETTING, AND PARTICIPANTS: Retrospective, observational cohort study of 3682 Michigan Medicaid-enrolled children aged 6 years or younger who had a screening blood lead level of at least 10 microg/dL (0.48 micromol/L) between January 1, 2002, and June 30, 2003. MAIN OUTCOME MEASURE: Testing within 180 days of an elevated screening lead level. RESULTS: Follow-up testing was received by 53.9% (95% confidence interval [CI], 52.2%-55.5%) of the children. In multivariate analysis adjusting for age, screening blood lead level results, and local health department catchment area, the relative risk of follow-up testing was lower for Hispanic or nonwhite children than for white children (0.91; 95% CI, 0.87-0.94), for children living in urban compared with rural areas (0.92; 95% CI, 0.89-0.96), and for children living in high- compared with low-risk lead areas (0.94; 95% CI, 0.92-0.96). Among children who did not have follow-up testing, 58.6% (95% CI, 56.3%-61.0%) had at least 1 medical encounter in the 6-month period after the elevated screening blood lead level, including encounters for evaluation and management (39.3%; 95% CI, 36.9%-41.6%) or preventive care (13.2%; 95% CI, 11.6%-14.8%). CONCLUSIONS: The rate of follow-up testing after an abnormal screening blood lead level was low, and children with increased likelihood of lead poisoning were less likely to receive follow-up testing. At least half of the children had a missed opportunity for follow-up testing. The observed disparities of care may increase the burden of cognitive impairment among at-risk children.

Completeness and complexity of information available to parents from newborn-screening programs.

BACKGROUND: In 2000, the American Academy of Pediatrics (AAP) Task Force on Newborn Screening published a blueprint for the future of newborn screening that included recommendations for information provided to parents about screening. OBJECTIVES: To evaluate the completeness of educational material provided by newborn-screening programs and to measure the reading level and complexity of the material. METHODS: Telephone survey of newborn-screening programs (n = 51) followed by content analysis of educational material. RESULTS: All 51 programs responded (response rate: 100%); 47 of these programs made educational material available. None of the material included all elements recommended in the blueprint. Benefits of screening (98%) and how parents would be notified of results (87%) were included more often than the risks of screening (19%), possibility of a false-positive result (13%), importance of (34%) and how to respond to (28%) a positive result, and the storage and use of residual samples (11%). The median readability grade level was 10. Grade-level complexity of the material was not associated with completeness according to the AAP criteria. CONCLUSIONS: Parent educational materials for newborn-screening programs do not meet the standard recommended by the AAP, and there are important variations between programs in the information provided to parents. Continuing research is needed to measure progress toward the goals outlined within the blueprint and to assess how these changes impact the care provided through newborn-screening programs.

Use of practice guidelines in the primary care of children with attention-deficit/hyperactivity disorder.

OBJECTIVES: Several guidelines have been published for the care of children with attention-deficit/hyperactivity disorder (ADHD); however, few data describe adoption of practice guidelines. Our study sought 1) to describe primary care diagnosis and management of ADHD, 2) to determine whether the care is in accordance with American Academy of Pediatrics (AAP) practice guidelines, and 3) to describe factors associated with guideline adherence. METHODS: We conducted a mail survey of 1374 primary care physicians in Michigan. Main outcome measures were reported adherence to practices specified in the AAP guidelines; ADHD practice patterns; and other measures, including attitudes about parent, teacher, and community influences on ADHD diagnosis and treatment. Bivariate and multivariate analyses were performed to assess patient and physician factors associated with adherence to guideline components. RESULTS: The overall response rate was 60%. The majority (77.4%) of primary care physicians were familiar with AAP guidelines on ADHD, and many (61.1%) reported incorporating the guidelines into their practice. Differences were apparent by specialty: 91.5% of pediatricians were familiar with the guidelines in contrast to 59.8% of family physicians. The majority of clinicians reported practices consistent with individual components of the diagnostic and treatment guidelines. However, when adherence to multiple components was analyzed together, only 25.8% of clinicians reported routine use of all 4 diagnostic components in the survey. In addition, some physicians continue to use diagnostic modalities that are currently not recommended for routine evaluation of school-aged children with ADHD--continuous performance testing, neuroimaging, and laboratory tests (eg, thyroid, lead, or iron testing). With regard to ADHD treatment, the majority (66.6%) of respondents reported routine recommendation of pharmacotherapy and titration of medications in the first month when prescribed (81.3%). However, just over half (53.1%) reported routine follow-up visits (3-4 times per year) for children who have ADHD and are taking medications. Most (53.4%) clinicians also recommended behavioral therapy for children who had a diagnosis of ADHD. Patterns of specialty differences were less consistent for treatment components: pediatricians were more likely to recommend medications, but family physicians reported more frequent follow-up evaluations for children who receive medications. There were no specialty differences in recommendations for behavioral therapy. In addition to physician specialty variations, differences in management were apparent by practice type and other demographic characteristics. There were few significant associations between adherence to guideline components and physician attitudes about parent, teacher, or community influences. However, these factors were noted by many respondents. Only 32.5% agreed that their community had adequate, accessible mental health resources. Half (50.1%) of the physicians reported that insurers limit coverage for assessment and treatment of ADHD. CONCLUSIONS: Primary care physicians generally report awareness of pediatric ADHD guidelines and follow these clinical practice recommendations. However, some physician variations are apparent, and areas for improvement are noted. Many primary care physicians report poor access to mental health services, limited insurance coverage, and other potential system barriers to the delivery of ADHD care. Additional study is needed to confirm provider-reported data; to determine what constitutes high-quality, long-term management of this chronic condition; and to confirm how reported practices associate with long-term outcomes for children with ADHD.

Hearing and vision screening program for school-aged children.

BACKGROUND: Hearing and vision screening programs for school-aged children are common, yet little is known about their impact. OBJECTIVE: To evaluate Michigan's screening program, in which local health department (LHD) staff screen school-aged children using standardized protocols. METHODS: This project was completed in three phases: interviews with officials and screening technicians from ten LHDs, audit of LHD records regarding outcomes of screening during the 2000-2001 school year, and telephone interviews with randomly selected parents of children with an abnormal screen. RESULTS: Variations in LHD program implementation pertained to methods for tracking outcomes, screening of older children, parental notification of screening results, and availability of follow-up hearing clinics. According to LHD records, documentation of follow-up examination after an abnormal screen was low (hearing 27%, vision 25%). In contrast, most parents reported follow-up (74% hearing, 76% vision), and many reported that this resulted in treatment (50% hearing, 74% vision). In logistic regression modeling, the odds of follow-up after hearing or vision screening according to parents was not associated with income, health insurance status, or race/ethnicity. For hearing screening, the odds of follow-up decreased with school grade (p <0.001); however, the proportion who received treatment did not vary by grade. For vision screening, follow-up did not vary by grade, but the proportion who received treatment increased with grade (p =0.05). CONCLUSIONS: According to parent reports, most children had follow-up after an abnormal screen, and the majority of these children received treatment. Screening school-aged children for sensory impairment appears to be an important public health function.

Preschool vision screening in primary care after a legislative mandate for diagnostic eye examinations.

BACKGROUND: Kentucky legislation now requires that children entering public school receive a diagnostic eye examination. METHODS: Mail survey of randomly selected office-based primary care pediatricians (PDs, n = 221) and family physicians (FPs, n = 207) in Kentucky to assess the impact of the mandated eye examination. RESULTS: The response rate was 71% PDs and 51% FPs. Most offer preschool vision screening (PD 86%; FP 79%; P = 0.16), but many report they will be less likely to offer it in the future because of the mandated diagnostic eye examination (PD 61%; FP 50%; P = 0.09). Perceived barriers to the diagnostic eye examination include lack of parental knowledge about the requirement, belief by parents that they will need to pay, difficulty in getting an appointment, and lack of endorsement by primary care physicians. CONCLUSION: Most primary care physicians in Kentucky offer preschool vision screening, but many now are likely to reduce their screening effort. Until more data are available regarding the impact of the required eye examination, primary care providers should not change their screening practices.