RESUMEN
Background: Children with congenital heart disease (CHD) are living longer than ever before. This growing cohort of adults with CHD has high medical and psychosocial needs. Also, patients and advocacy groups are justifiably demanding that their voices be heard in all phases of clinical and health services research. Methods: We conducted a first of its kind research priority-setting exercise with teens and adults with moderate-to-complex CHD. Focus groups were held using a fixed, mixed methods, exploratory sequential design. Objectives were to include the patient voice in all phases of the research process, determine the key needs of patients living with CHD, to guide health services research, and identify the "top 10" research priorities of teens and adults living with CHD. Results: Thirty-five patients participated in one of nine 3-hour focus groups where they shared their experiences living with CHD. They expressed a desire for connection with others living with CHD and altruistic motives for participating. Patients with CHD identified a need for information about their disease and prognosis, a need for connection through physical activity and mentorship programmes, and a need for advanced communication with health care teams. Qualitative results correlated well with quantitative ratings to create a patient-derived "top 10" research priorities list. Conclusions: Patients affected by a chronic disease like CHD want to be included in all phases of research. Our research priority-setting exercise in teens and adults with CHD has created a roadmap for clinicians and researchers to investigate issues most important to those living with CHD.
Contexte: Les enfants atteints d'une cardiopathie congénitale vivent plus longtemps que jamais auparavant. Cette cohorte croissante est composée d'adultes atteints de cardiopathie congénitale qui ont des besoins médicaux et psychosociaux importants. Par ailleurs, les patients et les groupes de revendication exigent à juste titre de faire entendre leurs voix lors de toutes les phases des recherches cliniques et de celles sur les services de santé. Méthodologie: Nous avons mené un exercice novateur sur l'établissement des priorités de recherche chez des adolescents et des adultes atteints de cardiopathie congénitale modérée ou complexe. Nous avons organisé des groupes de concertation selon un plan fixe, séquentiel, exploratoire, à méthodes mixtes. Les objectifs étaient de permettre aux patients de se faire entendre lors de toutes les étapes du processus de recherche, de déterminer les besoins clés des patients atteints de cardiopathie congénitale pour orienter les recherches sur les services de santé et d'identifier les 10 principales priorités de recherche chez les adolescents et les adultes atteints de cardiopathie congénitale. Résultats: L'exercice a porté sur 35 patients qui ont participé à l'un des neuf groupes de concertation de trois heures, au cours desquels ils ont fait part de leurs expériences de vie avec une cardiopathie congénitale. Les participants ont indiqué qu'ils souhaitaient former des liens avec d'autres personnes atteintes d'une cardiopathie congénitale et ont donné des motifs altruistes pour participer. Les patients ont reconnu la nécessité d'être informé au sujet de leur maladie et de leur pronostic, de former des liens par le biais de l'activité physique et de programmes de mentorat et de communiquer plus avec les équipes soignantes. Il existe une corrélation étroite entre les résultats qualitatifs et les évaluations quantitatives, ce qui a permis d'établir une liste des 10 principales priorités de recherche des patients. Conclusions: Les patients qui sont aux prises avec une maladie chronique comme la cardiopathie congénitale souhaitent être inclus dans toutes les phases des travaux de recherche. Par ailleurs, l'exercice sur l'établissement des priorités de recherche que nous avons effectué chez les adolescents et les adultes atteints d'une cardiopathie congénitale a permis de créer une feuille de route pour les cliniciens et les chercheurs. En effet, ce plan leur permettra d'étudier les questions les plus importantes pour les personnes qui vivent avec une cardiopathie congénitale.
RESUMEN
Double-chambered right ventricle (DCRV) is an uncommon congenital anomaly in which anomalous muscle bands divide the right ventricle into two chambers; a proximal high-pressure and distal low-pressure chamber. It may be associated with mid right ventricular obstruction. It is commonly associated with other congenital anomalies, most frequently perimembranous ventricular septal defect (PM-VSD). We herein present 5 adult patients with concomitant DCRV and PM-VSD who varied in their symptomatic presentations and the ways of management.
RESUMEN
BACKGROUND: Atrial function is an important contributor of ventricular function and has a prognostic role in various cardiovascular diseases. We tested the hypothesis that right and left atrial (RA & LA) function may not be equal despite their accommodating identical cardiac output. METHODS: Two-dimensional (2D) speckle tracking echocardiography was acquired from the apical four-chamber view in 100 normal subjects. Both RA/LA subendocardial borders were traced to obtain atrial volumes, strain (ε) and strain rate (SR). Reservoir, conduit, and booster pump functions were evaluated. Consequently, εNeg (corresponding to pump function) and εPos (corresponding to conduit function) were gauged. The SR parameters (SRLateNeg, SRPos, and SREarlyNeg), corresponding respectively to atrial systole, inception of ventricular systole, and inception of ventricular diastole, were measured. RESULTS: Mean age was 39 ± 15 years with 50 men (50%). Volumetric indices revealed that reservoir (Filling Volume = 35.1 ± 10.4 mL for LA vs. 27.47 ± 11.93 mL for RA, expansion index = 52.18 ± 16.89% for LA vs. 45.03 ± 16.49% for RA and diastolic emptying index = 52.85 ± 16.85 for LA vs. 45.62 ± 16.5 for RA, P < 0.001) and conduit (passive emptying (%) of total emptying = 34.49 ± 10.4 for LA vs. 26.82 ± 11.98 for RA and passive emptying index = 52.63 ± 16.86 for LA vs. 45.39 ± 16.5 for RA, P < 0.001) functions were significantly higher in the LA compared to the RA. Nevertheless, deformation indices demonstrated an opposite pattern (SRpos = 1.88 ± 0.74 for RA vs. 1.56 ± 0.54 for LA, P = 0.03 and εPos = 59.56 ± 30.63 for RA vs. 45.94 ± 16.67 for LA, P < 0.001). Reservoir, conduit, and booster pump functions showed no statistical significance among both genders. CONCLUSIONS: Evaluation of global and regional RA/LA function by speckle tracking echocardiography is feasible. The current report provides insights regarding dissimilarities between both atria in healthy individuals. The significance of these findings and their potential application will warrant further work.