Legal and Ethical Considerations in Allowing Parental Exemptions From Newborn Critical Congenital Heart Disease (CCHD) Screening.

Critical congenital heart disease (CCHD) screening is rapidly becoming the standard of care in the United States after being added to the Recommended Uniform Screening Panel (RUSP) in 2011. Newborn screens typically do not require affirmative parental consent. In fact, most states allow parents to exempt their baby from receiving the required screen on the basis of religious or personally held beliefs. There are many ethical considerations implicated with allowing parents to exempt their child from newborn screening for CCHD. Considerations include the treatment of religious exemptions in our current legal system, as well as medical and ethical principles in relation to the rights of infants. Although there are significant benefits to screening newborns for CCHD, when a parent refuses for religious or personal beliefs, in the case of CCHD screening, the parental decision should stand.

Health literacy and medication adherence in adolescents.

OBJECTIVE: To assess the relationship between health literacy levels and medication adherence in adolescents. STUDY DESIGN: A convenience sample of adolescents ages 12-21 years was recruited April-September 2011 at an urban adolescent health center. Health literacy and medication adherence was measured via the Rapid Estimate of Adult Literacy in Medicine-TEEN (REALM-TEEN) and Adherence to Refills and Medications Scale. The interrelated effects of age, sex, chronic illness, learning disability, health rating, and health literacy on adherence to medication were explored via the use of regression trees. RESULTS: Of 138 adolescents surveyed, 112 (81%) were included in the analysis because they reported ever taking a medication and completed all survey questions. Median participant age was 16.1 years, 94% were African American, and 64% were female. Median REALM-TEEN score was 57 (6th-7th grade; range 0-66). Median ARMS score was 21 (poor; range 0-56). A positive correlation was found between worse adherence (greater ARMS scores) and self-report of a learning disability (P = .041), and between ARMS scores and having a chronic illness (P = .003). The ARMS and REALM-TEEN scores were not correlated (P = .069). Regression tree analysis indicated that adolescents with both a chronic illness and a learning disability had worse ARMS scores (median score 24), compared with adolescents having only a chronic illness (median score 22), independent of health literacy scores. CONCLUSION: Almost one-quarter of adolescents reported having a learning disability and had worse medication adherence independent of health literacy levels. This finding suggests other cognitive factors, beyond reading, may play a role in medication adherence.

Adolescent brain development and the mature minor doctrine.

The medical rights of minors have been questioned, especially due to information on adolescent brain development and studies on adolescent decision-making. This chapter briefly introduces the mature minor doctrine (MMD) and its history, justification, and practice and then presents some of the objections to the MMD. The article then highlights new knowledge about adolescent brain development (ABD) and what this may contribute to this debate and describes "hot cognition" and "cold cognition". It concludes by alerting the reader to the danger of making inappropriate use of the discoveries of brain science and proposing a prudent approach to adolescent consent and confidentiality, one that incorporates the new knowledge on ABD without "turning back the clock" on the medical rights of minors.

The aftermath of adolescent suicide: clinical, ethical, and spiritual issues.

The aftermath of an adolescent's suicide can be devastating to family, friends, and treating professionals, yet not much has been written on this subject. In this article, we briefly develop a conceptualization of suicide and a typology of suicide and the physicians' attitudes toward suicide. This is followed with a more detailed review of the aftermath of suicide (focusing on the suicide grievers) and the impact of suicide on clinicians. The work ends with discussion of research data and the role of spirituality as well as an outline of therapeutic interventions.

Treatment of anorexia nervosa against the patient's will: ethical considerations.

By the nature of their illness, many if not most patients with anorexia nervosa are treated against their will. This article explores the issue of patient autonomy and right to treatment refusal in the light of justified paternalism as well as a more enriched understanding of autonomy in the context of relationships. A summary follows on the research on patients' perceptions and response to involuntary treatment. The conclusion addresses the importance of human values intrinsic to the quality of a clinical relationship as determinant for patient recovery and professional satisfaction.

Iatrogenesis: ethical and legal aspects.

This article describes iatrogenic events, giving examples that range from individual error to systemic malfunctions. It then goes on to analyze individual and system responsibilities in the disclosure of iatrogenic events. A discussion follows on the physician's responsibility, professional integrity, "duty to warn", and transparency as they relate to error disclosure, including an examination of the role of apology and repair in the setting of iatrogenesis. It concludes by considering the moral and legal operational implications of iatrogenic events and the building of a culture of safety.

Protection of children in research: beyond pediatric risk levels: the emergence of the research subject advocate.

The author describes the role of the research subject advocate (RSA), inaugurated in 2001, which adds a fourth level of protection for human research subjects.

Hospitalization of children and adolescents for eating disorders in the State of New York.

PURPOSE: To examine hospitalization patterns, length of stay, cost and insurance status for children and adolescents with Eating Disorders. METHODS: A cross-sectional study was conducted of patients with eating disorders aged 9 to 17 years, discharged from hospitals in the State of New York in 1995. All patients discharged in the state were registered by the State Planning and Research Collaborative System (SPARCS). A subset was identified based on coding by the International Classification of Diseases (ICD) for Anorexia Nervosa, Bulimia and Eating Disturbance Not Otherwise Specified. The Statistical Analysis System (SAS) was used for data analysis. The variables selected were gender, ethnicity, insurance status and length of stay. RESULTS: In one year there were 352 hospitalizations, 312 females (88.6%) and 40 males (11.4%); 279 Caucasians (79.3%), 35 African Americans (9.9%), and 38 Other (10.8%); commercial insurance 246 (69.9%), Medicaid 68 (19.3%), other 38 (10.8%). The diagnostic categories were Anorexia Nervosa 242, Bulimia 59, and Eating Disturbance Not Otherwise Specified 63 (reflecting dual diagnosis in 13). Mean length of stay was 18.43 days, the median was 7 days. The cost per stay ranged between 341.78 dollars and 148,471 dollars; with a median of 3817 dollars and a mean of 10,019 dollars. Length of stay was not influenced by gender, age, or ethnicity; only payor status, availability of insurance, was dominant. CONCLUSIONS: This is the first statewide report on hospitalization of children and adolescents for eating disorders. The mean cost in 1995 exceeded 10,000 dollars. A correlation was found between length of stay and insurance status. Hospitalizations for eating disorder have a significant public health impact, calling for the formulation of fair and rational strategies to optimize care.

Clinical trials in pediatric traumatic brain injury: unique challenges and potential responses.

In order to optimize pediatric traumatic brain injury translational and clinical research, scientific and ethical challenges need to be recognized and addressed. Having recently conducted a multisite phase II safety/feasibility trial of magnesium sulfate as a neuroprotective agent, we supplement our own experience by a mini review of similar studies, identifying challenges and possible responses from the perspective of families, investigators, funding agencies and society.

Premenstrual dysphoric disorder in adolescents: case reports of treatment with fluoxetine and review of the literature.

Premenstrual dysphoric disorder (PMDD) is a periodic, recurrent, debilitating condition with severe psychological or affective symptoms during the late luteal phase. PMDD often begins during adolescence. Dysregulation of the serotonergic system has been proposed recently as its cause and fluoxetine has been recommended as an appropriate treatment. We report 3 adolescents with PMDD who were treated for 2 years with fluoxetine, resulting in complete symptom resolution, and review the clinical trials supporting its use. Case reports of successfully treated teenagers are an addition to the accumulated evidence of the efficacy of fluoxetine for treatment of PMDD in adult women. Together they may provide some justification for the compassionate use of fluoxetine for adolescent girls who are being disabled by PMDD. However, more research is called for: a randomized placebo-controlled trial in adolescents is warranted.

Ipecac syrup abuse, morbidity, and mortality: isn't it time to repeal its over-the-counter status?

PURPOSE: To review and address the abuse of ipecac, describing its epidemiology, toxicity, clinical characteristics, and laboratory assessment. METHODS: A Medline search (1980-2003) for Ipecac abuse and Ipecac toxicity, n = 34. RESULTS: Ipecac abuse occurs predominantly among adolescent and young adult females who are either experimenting with purging or have an eating disorder. Psychiatric comorbidity is common. Death can occur and is usually of cardiac origin. Morbidity includes myocarditis with arrhythmias, myositis, gastroesophageal pathology, including Mallory Weiss tears, diarrhea, and metabolic abnormalities (alkalosis, hypokalemia, dehydration). The injuries can reverse with cessation of ipecac use. A high index of suspicion is needed for early detection. Classic findings are abnormal EKG and echocardiography and/or elevation of muscle enzymes (CPK, adolase). Emetine, the alkaloid in ipecac, can be confirmed in serum, urine, and tissue by high performance liquid chromatography. CONCLUSIONS: Ipecac abuse is dangerous, even deadly. However, if abuse is discontinued, cardiac and muscle damage tends to reverse. Were ipecac syrup to remain an over- the-counter medication, or become a prescription medication, more stringent warning labels ought to be included and further education be provided about its toxicity and potential for abuse. Removing ipecac from the over-the-counter category would best eliminate its potential for abuse.

Will I be alive in 2005? Adolescent level of involvement in risk behaviors and belief in near-future death.

OBJECTIVE: We examined the association between a belief in one's future mortality and various risk-taking behaviors among urban black adolescents. In particular, we investigated whether adolescents with higher levels of participation in various risk behaviors were more likely to believe in their future death as compared with adolescents with lesser levels of risk-taking behavior. METHODS: Data obtained from April 1994 to March 1997 were analyzed for a total of 2694 adolescents, aged 12 to 21 years. The odds of believing that one would die within the next 2 years were calculated for various levels of participation in risk behaviors involving alcohol, drugs, and criminal or violent acts. RESULTS: A total of 160 adolescents (7.1% of all boys and 5.4% of all girls) reported that they believed that they would die within the next 2 years. The adjusted odds of future death belief among adolescents who both actively engaged in and knew others who participated in all of the various risk behaviors, relative to adolescents who neither personally engaged in nor knew others who participated in any of the risk behaviors, was 3.22 (95% confidence interval [CI]: 2.01-5.17) vs 1.14 (95% CI: 0.67-1.95) for drug use and drug selling, 2.01 (95% CI: 1.38-2.92) vs 0.8 (95% CI: 0.39-1.62) for combined alcohol and drug use, and 5.60 (95% CI: 2.03-15.47) vs 1.61 (95% CI: 1.08-2.42) for violent physical behavior. In addition, residence in a foster home was significantly associated with death belief after adjustment for all other variables. CONCLUSIONS: There is a significant relationship between certain risk behaviors and belief in near-future death. Moreover, higher levels of involvement in risk behaviors were associated with a stronger likelihood of belief in near-future mortality. Identification of adolescents who engage in certain risky behaviors, combined with a recognition of the degree to which the adolescent participates in the particular behavior(s), may be used to facilitate more rapid intervention among youths who either believe in their imminent demise or engage in behaviors that increase the likelihood of their untimely death.

Nocturnal nasogastric refeeding for hospitalized adolescent boys with anorexia nervosa.

Boys with anorexia nervosa have nutritional needs exceeding those of their female counterparts. For many males with anorexia nervosa, oral refeeding alone may result in low discharge weight, a critical risk factor in relapse. This study compared the short-term outcomes of oral refeeding (OR) and a combination of OR with supplemental nocturnal nasogastric refeeding (NNGR) in a sample of hospitalized boys. This was a retrospective chart review with a cohort design. Subjects were partitioned into: The OR group (n = 8, mean age = 14.9, SD = 1.7) and the OR + NNGR group (n = 6, mean age = 13.8, SD = 2.0). The NNGR group had greater increase in weight and Body Mass Index. Their average length of hospitalization was also shorter. Nocturnal nasogastric refeeding, complementing oral refeeding, should be considered as an alternative initial therapy for weight restoration in males with anorexia nervosa.

Bulimia nerviosa (Parte 2). Desde la etiología hasta la prevención / Bulimia nervosa (Part 2): From ethiology to prevention

Se provee al pediatra una revisión de la bulimia nerviosa (Parte 2), enfocada en la medicina basada en la evidencia, alertando acerca de los factores de riesgo para el desarrollo de esta condición y con énfasis en la existencia de un grupo de alto riesgo. También se comparten los pensamientos actuales con respecto a etiología, así como las distintas manifestaciones de la bulimia nerviosa en ambos géneros. Concluimos con una revisión de la literatura reciente acerca de la prevención, el tratamiento y la evolución.