RESUMO
OBJECTIVE: To evaluate the impact of a novel nurse-led transition intervention program designed for young adolescents (age 13-14 years) with congenital heart disease (CHD). We hypothesized that the intervention would result in improved self-management skills and CHD knowledge. STUDY DESIGN: Single-center cluster randomized controlled trial of a nurse-led transition intervention vs usual care. The intervention group received a 1-hour individualized session with a cardiology nurse, focusing on CHD education and self-management. The primary end point was change in TRANSITION-Q (transition readiness) score between baseline and 6 months. The secondary end point was change in MyHeart score (CHD knowledge). RESULTS: We randomized 60 participants to intervention (n = 30) or usual care (n = 30). TRANSITION-Q score (range 0-100) increased from 49 ± 10 at baseline to 54 ± 9.0 at 6 months (intervention) vs 47 ± 14 to 44 ± 14 (usual care). Adjusted for baseline score, TRANSITION-Q scores at 1 and 6 months were greater in the intervention group (mean difference 5.9, 95% CI 1.3-10.5, P = .01). MyHeart score (range 0-100) increased from 48 ± 24 at baseline to 71 ± 16 at 6 months (intervention) vs 54 ± 24 to 57 ± 22 (usual care). Adjusted for baseline score, MyHeart scores at 1 and 6 months were greater in the intervention group (mean difference 19, 95% CI 12-26, P < .0001). Participants aged 14 years had a greater increase in TRANSITION-Q score at 6 months compared with 13-year-old participants (P < .05). CONCLUSIONS: A nurse-led program improved transition readiness and CHD knowledge among young adolescents. This simple intervention can be readily adopted in other healthcare settings. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02374892.
Assuntos
Cardiopatias Congênitas , Transição para Assistência do Adulto/organização & administração , Adolescente , Feminino , Humanos , Masculino , Educação de Pacientes como Assunto , AutogestãoRESUMO
OBJECTIVE: To evaluate practice variation in pharmacologic management in the International Kawasaki Disease Registry (IKDR). STUDY DESIGN: Practice variation in intravenous immunoglobulin (IVIG) therapy, anti-inflammatory agents, statins, beta-blockers, antiplatelet therapy, and anticoagulation was described. RESULTS: We included 1627 patients from 30 IKDR centers with maximum coronary artery aneurysm (CAA) z scores 2.5-4.99 in 848, 5.0-9.99 in 349, and ≥10.0 (large/giant) in 430 patients. All centers reported IVIG and acetylsalicylic acid (ASA) as primary therapy and use of additional IVIG or steroids as needed. In 23 out of 30 centers, (77%) infliximab was also used; 11 of these 23 centers reported using it in <10% of their patients, and 3 centers used it in >20% of patients. Nonsteroidal anti-inflammatory agents were used in >10% of patients in only nine centers. Beta-blocker (8.8%, all patients) and abciximab (3.6%, all patients) were mainly prescribed in patients with large/giant CAAs. Statins (2.7%, all patients) were mostly used in one center and only in patients with large/giant CAAs. ASA was the primary antiplatelet modality for 99% of patients, used in all centers. Clopidogrel (18%, all patients) was used in 24 centers, 11 of which used it in >50% of their patients with large/giant CAAs. CONCLUSIONS: In the IKDR, IVIG and ASA therapy as primary therapy is universal with common use of a second dose of IVIG for persistent fever. There is practice variation among centers for adjunctive therapies and anticoagulation strategies, likely reflecting ongoing knowledge gaps. Randomized controlled trials nested in a high-quality collaborative registry may be an efficient strategy to reduce practice variation.
Assuntos
Anti-Inflamatórios não Esteroides/uso terapêutico , Aspirina/uso terapêutico , Imunoglobulinas Intravenosas/uso terapêutico , Fatores Imunológicos/uso terapêutico , Síndrome de Linfonodos Mucocutâneos/tratamento farmacológico , Pré-Escolar , Aneurisma Coronário/etiologia , Feminino , Humanos , Lactente , Masculino , Síndrome de Linfonodos Mucocutâneos/complicações , Padrões de Prática Médica , Sistema de Registros , Estudos RetrospectivosRESUMO
OBJECTIVES: To determine the sensitivity and specificity of the clinical assessment of murmurs in neonates, as performed by pediatric cardiologists, and to identify clinical features that predict the presence of congenital heart disease (CHD) in this population. STUDY DESIGN: Neonates (n = 201) referred for outpatient evaluation of a heart murmur were enrolled consecutively. After a clinical evaluation, the cardiologist documented whether the murmur was "likely innocent" or "likely pathologic." The cardiologist repeated his/her assessment after an electrocardiogram. Echocardiography served as the gold standard. RESULTS: The median age was 12 days (range, 2-31 days). CHD was present in 113 of 201 (56%). Clinical assessment alone identified patients with CHD with a sensitivity of 80.5% (95% CI, 73.2-87.8), specificity of 90.9% (95% CI, 84.9-96.9), positive predictive value of 91.9% (95% CI, 86.6-97.3), and negative predictive value of 78.4% (95% CI, 70.4-86.4). The addition of an electrocardiogram did not improve these test characteristics. Features that were predictive of CHD were murmur quality (P < .0001), location (P = .02), and timing (P = .04). No patients requiring catheter or surgical intervention were missed by clinical assessment. CONCLUSIONS: The prevalence of CHD in this referral population was high. Clinical assessment detected all complex CHD, although some simple lesions were missed. Murmur quality, location, and timing were predictive of CHD.