Arwa Saidi

Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues: A Scientific Statement From the American Heart Association

Many children born with complex childhood illnesses that historically caused early death are now surviving into adulthood with the expectation of leading meaningful and productive lives. They will ultimately need to transition their care from pediatric to adult-centered care. Unfortunately, in the absence of structured programs to guide this transition, there is often delayed or inappropriate care, improper timing of the transfer of care, and undue emotional and financial stress on the patients, their families, and the healthcare system. At its worst, and as frequently happens now, patients are lost to appropriate follow-up. In fact, the number of adults with congenital heart disease (CHD) in the United States is rising exponentially and now exceeds 1 000 000.1,–,7 At least half of these patients may have complex CHD. Fewer than 30% of adults with CHD are seen by appropriate specialized providers. Fewer than 15% of these patients, who are seen in specialty adult CHD (ACHD) clinics, have CHD that is classified as severe.8 Thus, adolescents with CHD constitute a growing population of individuals for whom a well-planned and well-executed “transition process” is essential. The goals of a formal transition program are to prepare young adults for transfer of care. It should provide uninterrupted health care that is patient centered, age and developmentally appropriate, flexible, and comprehensive. It should include age-appropriate education about medical conditions and promote skills in communication, decision making, self-care, and self-advocacy.9,–,13 It should foster greater personal and medical independence and a greater sense of control over health, healthcare decisions, and psychosocial environment. The ultimate goal of a transition program is to optimize the quality of life (QOL), life expectancy, and future productivity of young patients.14 We acknowledge that the development of ideal transition programs is a …

Depression and anxiety in adult congenital heart disease: Predictors and prevalence

BACKGROUND Adult congenital heart disease (ACHD) patients face unique medical and social challenges that may contribute to psychological difficulties. The goals of this study were to identify predictors of symptoms of depression and anxiety and evaluate the prevalence of mood and anxiety disorders among North American ACHD patients. METHODS In this cross-sectional study, consecutive patients were recruited from two ACHD outpatient clinics. All patients completed self-report psychosocial measures and a subset was randomly selected to participate in structured clinical interviews. Linear regression models were used to predict symptoms of depression and anxiety. RESULTS A total of 280 patients (mean age=32 years; 52% female) completed self-report measures. Sixty percent had defects of moderate complexity and 31% had defects of great complexity. Significant predictors of depressive symptoms were loneliness (p<0.001), perceived health status (p<0.001), and fear of negative evaluation (p=0.02). Predictors of anxiety symptoms were loneliness (p<0.001) and fear of negative evaluation (p<0.001). Disease severity and functional class did not predict mood or anxiety symptoms. Fifty percent of interviewed patients (29/58) met diagnostic criteria for at least one lifetime mood or anxiety disorder, of whom 39% had never received any mental health treatment. CONCLUSIONS The results confirm an increased risk and under-treatment of mood and anxiety disorders in ACHD patients. Social adjustment and patient-perceived health status were more predictive of depression and anxiety than medical variables. These factors are modifiable and therefore a potential focus of intervention.

Utilization of Pharmacologic Treatment in Youths with Attention Deficit/Hyperactivity Disorder in Medicaid Database:

Background: Little is known about longitudinal changes in drug utilization in attention-deficit/hyperactivity disorder (ADHD). Objective: To describe longitudinal trends in ADHD drug utilization and explore demographic differences among youths eligible for a large Southern state Medicaid program. Methods: A cross-sectional and longitudinal analysis of 10 years of claims data for all Medicaid beneficiaries younger than 20 years of age with 6 months or more of continuous insurance (N = 2,131,953) was conducted. Annual prevalence, incidence, and persistence in ADHD medication use (stimulants and atomoxetine) were estimated based on pharmacy claims and clinician-reported ADHD diagnosis. Results: ADHD prevalence increased 1.70-fold (95% CI 1.67 to 1.73) from 3.10% (21,904 of 705,573 beneficiaries) in fiscal year 1995–1996 to 5.27% (41,661 of 790,338) in 2003–2004, paralleled by a 1.84-fold (95% CI 1.81 to 1.87) increase in drug use to 4.63%. In 2003–2004, 0.69% of youths were diagnosed and newly started on drugs, reflecting a 1.38-fold (95% CI 1.33 to 1.43) increase over 1995–1996. One in five white males between the ages of 10 and 14 years (19.24%; 95% CI 18.81 to 19.67) received ADHD medication in 2003–2004. Males continued to be more likely diagnosed and treated than females (prevalence ratio [PR] in 2003–2004 = 2.96:95% CI 2.90 to 3.03 vs 3.82; 95% CI 3.69 to 3.96 in 1995–1996), as were whites when compared with Hispanics (PR in 2003–2004 = 2.65; 95% CI 2.57 to 2.73 vs 3.78; 95% CI 3.57 to 3.99 in 1995–1996) and blacks (PR in 2003–2004 = 1.81; 95% CI 1.76 to 1.85 vs 2.00; 95% CI 1.93 to 2.07 in 1995–1996). The most common starting age throughout the study period was 5–9 years, with 2.45% (95% CI 2.37 to 2.52) new ADHD drug users in 2003–2004, but largest increases in prevalence were observed in adolescents 15–19 years of age, with 2.47% (95% CI 2.38 to 2.55) in 2003–2004 compared with 0.45% (95% CI 0.41 to 0.49) in 1995–1996. Medication persistence varied, with only 49.9% (95% CI 49.4 to 50.5) of new users receiving drugs after 1 year, with yet another 17.2% (95% CI 16.4 to 18.0) continuing for 5 years or more. Conclusions: ADHD drug utilization continues to increase due to steady increases in diagnosis and chronic use of the drugs over several years. While racial, ethnic, and sex differences persist, the age distribution of drug users has shifted toward older children. These findings emphasize the need for studies that analyze determinants of treatment as well as outcomes, both benefits and risks, associated with long-term medication use.

Cardiac Safety of Central Nervous System Stimulants in Children and Adolescents With Attention-Deficit/Hyperactivity Disorder

OBJECTIVES. Case reports have raised concerns about the risk of cardiac events associated with central nervous system stimulants for the treatment of attention-deficit/hyperactivity disorder. PATIENTS AND METHODS. This was a retrospective cohort study that used 10 years (July 1994 to June 2004) of Florida Medicaid claims data cross-linked to Vital Statistics Death Registry data. The cohort was composed of all youth 3 to 20 years old who were newly diagnosed with attention-deficit/hyperactivity disorder. Each month of follow-up was classified according to stimulant claims (methylphenidate, amphetamines, and pemoline) as current use (active stimulant claim), former use (time after periods of current use), or nonuse (time preceding the first stimulant claim, including follow-up of youth who were never exposed to stimulants). The studys end points were (1) cardiac death, (2) first hospital admission for cardiac causes or (3) first emergency department visit for cardiac causes. Risks were compared with time-dependent Cox regression analysis adjusting for various cardiac risk factors. RESULTS. During 124932 person-years of observation (n = 55383), 73 youth died, 5 because of cardiac causes. No cardiac death occurred during 42612 person-years of stimulant use. Hospital admissions for cardiac cause occurred for 27 children (8 during stimulant use, 11 during 35671 person-years of former use, and 8 during 46649 person-years of nonuse); and 1091 children visited the emergency department for cardiac causes (8.7 per 1000 person-years). Current stimulant use was associated with a 20% increase in the hazard for emergency department visits when compared with nonuse. No increased risk was found for periods of former use when compared with nonuse. CONCLUSIONS. Incidence rates of cardiac events requiring hospitalization were small and similar to national background rates. Stimulants were associated with an increase in cardiac emergency department visits. More evidence is needed that addresses the long-term risk/benefit of the various treatment options and the effect of other cardiac risk factors and comedications.

Cost-effectiveness of Respiratory Syncytial Virus Prophylaxis in Various Indications

OBJECTIVES To evaluate the cost-effectiveness of immunoprophylaxis against respiratory syncytial virus (RSV) infections with palivizumab based on actual cost and observed incidence rates in various pediatric risk groups. DESIGN Decision tree analysis comparing children with various combinations of the following indications: chronic lung disease, congenital heart disease, or prematurity (≤32 weeks gestation), and children with none of these indications. One-way sensitivity analyses and Monte Carlo simulations were used to quantify parameter uncertainty. SETTING Florida during the 2004-2005 RSV season. PARTICIPANTS A total of 159,790 Medicaid-eligible children aged 0 to 2 years. INTERVENTION Palivizumab prophylaxis compared with no prophylaxis. OUTCOMES MEASURE Incremental cost (2010 US dollars) per hospitalization for RSV infection avoided. RESULTS The mean cost of palivizumab per dose ranged from

Cardiac Safety of Methylphenidate Versus Amphetamine Salts in the Treatment of ADHD

1661 for infants younger than 6 months of age to

Cardiovascular safety of central nervous system stimulants in children and adolescents: population based cohort study.

2584 for children in their second year of life. Among preterm infants younger than 6 months of age without other indications, immunoprophylaxis with palivizumab cost

Palivizumab utilization and compliance: trends in respiratory syncytial virus prophylaxis in Florida.

302,103 (95% confidence interval,

Parental Knowledge Regarding Lifelong Congenital Cardiac Care

141,850-

Effectiveness of palivizumab prophylaxis in infants and children in Florida

914,798) to prevent 1 RSV-related hospitalization. Given a mean cost of