Intensive home visiting is associated with decreased risk of infant death.

OBJECTIVE: The goal was to test the hypothesis that participation in a community-based home-visiting program is associated with a decreased risk of infant death. METHODS: A retrospective, case-control design was used to compare the risk of infant death among participants in Cincinnati's Every Child Succeeds program and control subjects matched for gestational age at birth, previous pregnancy loss, marital status, and maternal age. The likelihood of infant death, adjusted for level of prenatal care, maternal smoking, maternal education, race, and age, was determined with multivariate logistic regression. The interaction between race and program participation and the effect of home visiting on the risk of preterm birth were explored. RESULTS: Infants whose families did not receive home visiting (n = 4995) were 2.5 times more likely to die in infancy compared with infants whose families received home visiting (n = 1665). Black infants were at least as likely to benefit from home visiting as were nonblack infants. No effect of program participation on the risk of preterm birth was observed. CONCLUSION: The current study is consistent with the hypothesis that intensive home visiting reduces the risk of infant death.

Specialists understanding of the health care preferences of chronically ill adolescents.

PURPOSE: Doctors must understand patients' priorities to create an effective treatment partnership. Little is known about whether subspecialist pediatricians understand chronically ill adolescents' preferences. METHODS: A survey was conducted of 155 adolescents with chronic illnesses and 52 subspecialty physicians recruited from the same clinics of a children's hospital. Adolescents and physicians rated the importance that adolescents place on items relating to quality of care and physician-patient communication styles using a previously validated measure. RESULTS: For quality of care items, rank order correlation between physicians and patient responses was high (r = .63, p < .001) and both rated pain management items as most important. Physicians underestimated the importance adolescents placed on communicating with the physician as a friend and medical-technical aspects of care. For communication items, physicians' responses were significantly different than adolescents for 13 of 17 items. Except for three items pertaining to autonomy, physician and patient responses were in the same direction, but adolescent responses were less extreme. CONCLUSIONS: Physicians understood the importance of pain management to adolescents with chronic illnesses, but overestimated their desired level of autonomy. Asking adolescents for their preferences may be the first step in improving adolescents' experience of care.

Health care preferences and priorities of adolescents with chronic illnesses.

BACKGROUND: Efforts to make health care for adolescents with chronic illnesses more patient-centered must be grounded in an understanding and clear measures of adolescents' preferences and priorities. OBJECTIVE: To develop a measure of health care preferences of adolescents with chronic illnesses and to determine demographic, developmental, and health factors associated with adolescents' preferences. DESIGN: Mixed-method questionnaire development and survey. SETTING: Subspecialty clinics of a tertiary care children's hospital. PARTICIPANTS: All adolescents (age: 11-19 years) with juvenile rheumatoid arthritis, sickle cell disease, inflammatory bowel disease, or cystic fibrosis of at least 2-year duration who were being treated at the participating center were eligible to participate, and 155 of 251 did so (62%). The participants had a mean age of 15.5 +/- 2.4 years, 45% were male, and 75% were white. INTERVENTION: None. MAIN OUTCOME MEASURES: Ratings of 65 items related to quality of care and 17 items related to physician-patient communication styles. RESULTS: An 82-item questionnaire, devised from qualitative analysis of focus group results, contained 65 Likert scale items that adolescents considered important for health care quality and 17 forced-choice items related to adolescents' preferences for communication. Among the first 65 items, the group of questions related to physician trust and respect had the highest rating of 5.24 +/- 0.62 of 6, followed by patient power and control (mean rating: 4.72 +/- 0.77) and then caring and closeness in the patient-doctor relationship (mean rating: 4.19 +/- 0.91). For the communication items, the adolescents, on average, preferred communication directly to them rather than to their parents and were nearly neutral regarding physicians' inquiries about personal issues. CONCLUSIONS: Participants rated aspects of interpersonal care (especially honesty, attention to pain, and items related to respect) as most important in their judgments of quality. As in most previous studies of adults, technical aspects of care were also rated highly, suggesting that adolescents understand and value both scientific and interpersonal aspects of care.

Differences between adolescents' and parents' reports of health-related quality of life in cystic fibrosis.

Our objective was to determine the magnitude and direction of differences between adolescents with cystic fibrosis (CF) and their parents' reports of the adolescents' health-related quality of life (HRQOL) as measured by the adolescent and parent versions of the Child Health Questionnaire (CHQ). Sixty-two adolescents (mean age, 13.7 years; 46% female; mean forced expired volume in 1 sec, 73%) completed the 87-item adolescent form, and their parents (79% mothers; 77% working full or part time) completed the 50-item parent form of the CHQ during a routine clinic visit. For each scale, ANOVA was used to determine pairwise differences between adolescent and parent scale scores. For scales in which a significant parent-adolescent difference existed, ANCOVA was used to determine disease and demographic factors independently associated with differences in scores. Finally, responses for each pair were compared only on similarly worded items within each scale. For the full CHQ scales, adolescents rated their HRQOL significantly better than did their parents with regard to General Health (mean difference, 12.4 points), Role Function/Physical (mean difference, 9.0 points), Behavior (mean difference, 4.8 points), and Physical Function (mean difference, 4.0 points). No demographic or health factor was associated consistently with differences in parent-adolescent scores. When only similarly worded items were compared, adolescents still tended to rate their HRQOL better, but the difference was significant only for General Health (P = 0.0005), where adolescents rated themselves less susceptible to illness and less worried about their health than their parents. In conclusion, optimal measurement of adolescent HRQOL will likely require determining both parent and adolescent perceptions of HRQOL.

Risk of hearing impairment in pediatric liver transplant recipients: a single center study.

As survival rates following liver transplantation have increased, health care providers must assess the impact of transplantation on dimensions other than traditional medical measures. Hearing impairment may adversely impact social, emotional, cognitive, academic, and speech and language development. We hypothesized that children who undergo liver transplantation are at risk for hearing impairment due to exposure to ototoxic drugs. We conducted a review of 74 children who had undergone liver transplantation between December 1996 and September 2000 at Cincinnati Children's Hospital Medical Center. Hearing was assessed at discharge by an audiologist using age and developmentally appropriate techniques. The principal outcome measure was sensorineural hearing impairment. Independent variables were age at transplantation, United Network for Organ Sharing (UNOS) status at transplantation, primary diagnosis, post-transplant length of hospital stay, days of treatment with aminoglycosides, and days of treatment with loop diuretics. Eleven of 74 children (15%) had sensorineural hearing loss, of whom four had severe to profound hearing loss. Multivariate analyses showed that the adjusted relative risk for hearing loss in patients with hepatoblastoma was 66 and that there was a 5% increase risk for hearing loss for each additional day of hospitalization. Age at transplantation, UNOS status, and days of treatment with loop diuretics or aminoglycosides did not achieve significance in the model. Sensorineural hearing impairment occurs in a subset of pediatric patients following liver transplantation. Patients with hepatoblastoma or those who experience prolonged hospitalization after transplantation are at increased risk. Our observations are of particular importance for pediatric liver transplant recipients since the median age at transplantation is 12-18 months, a critical period for language acquisition.

Impact of recent pulmonary exacerbations on quality of life in patients with cystic fibrosis.

OBJECTIVE: To compare the health-related quality of life (HRQOL) of people with cystic fibrosis (CF) to the general population, and to determine the relationship between HRQOL and clinical and demographic factors. DESIGN: Cross-sectional analysis of observational cohort. SETTING: Outpatient clinics of a Midwestern CF center. SUBJECTS: One hundred sixty-two subjects with CF aged 5 to 45 years. MAIN OUTCOME MEASURES: Physical and psychosocial summary scores and individual scale scores for the Child Health Questionnaire and Short Form-36. RESULTS: Compared with the general population, people with CF reported similar scores for most psychosocial measures, but lower scores for most physical measures, with the lowest scores on the general health perceptions scale. In multivariable analyses, pulmonary exacerbations in the past 6 months were strongly associated with the physical (p = 0.001) and psychosocial (p = 0.0003) scores. The physical score fell, on average, 6 points per exacerbation and the psychosocial score fell 3 points. Lung function, nutrition, 6-min walk distance, age, gender, and insurance status were not significantly associated with HRQOL in this study population. Those who declined to participate had significantly lower FEV(1) percent predicted and nutritional indexes. Our findings may not be generalizable to the entire CF population. CONCLUSION: Recent pulmonary exacerbations have a profound negative impact on HRQOL that is not explained by differences in lung function, nutritional status, or demographic factors.

The sustained impact of an evidenced-based clinical pathway for acute appendicitis.

Appendicitis is a frequent pediatric surgical condition for which there is great variability among practitioners regarding diagnosis and postoperative management. With this in mind, the authors designed and implemented an evidence-based appendicitis clinical pathway at their institution. Establishment of the pathway resulted in decreased hospital cost, reduced hospital stay, and fewer unnecessary laboratory tests. The purpose of the current study was to determine the sustainability of the pathway beyond its initial implementation phase. The authors showed that several, but not all, favorable outcomes of the pathway were sustained. These data suggest that a clinical pathway for appendicitis at the authors' institution results in sustained beneficial effects in some but not all outcome parameters. Ongoing monitoring of pathway compliance, continued education of practitioners and nursing personnel, and identification of key pathway team member(s) responsible for the pathway system might result in a greater long-term impact of these guidelines.