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Quality of Life Together with neurodevelopment purchase 480mg septra, health-related quality of life is increasingly and appropriately viewed as a significant outcome in pediatric cardiology (see Chapter 77) (58 order genuine septra,77 buy septra 480mg without prescription,78). Crucially, this construct is driven by the perspective of the person with a congenital heart defect (and the family), and integrates domains such as school functioning, social functioning, and independent living (56). For these reasons, quality of life metrics provide a view that is often missed when focusing exclusively on clinic data or administrative records, and require from investigators new skill sets, novel methods, and specifically designed tools (79,80,81,82). In fact, the scarcity of validated assessment tools targeted at people with congenital heart defects and their families have been a major challenge. Two recent reviews of the literature have highlighted the heterogeneity of methods, definitions, and assessment tools in quality of life studies in people with congenital heart defects, as well as the limited quality of some reports (74,78). These limitations add to the challenges of combining and understanding the aggregate data, particular in the presence of inconsistent or unexpected results (78). A further challenge is that findings in one country or population may not be directly transferable elsewhere— precisely because quality of life is expected to depend not only on medical issues (e. The overall conclusion in the reviewed data seems to be that the quality of life of adult patients with congenital heart disease appears to be compromised in physical domains, possibly less so in the psychosocial domains; however, results are quite variable, among adults and in children, as well as between children and their parents (74,78). By contrast, several studies in North America and Europe reported worse health-related quality of life in people with congenital heart defects compared to reference groups (89,90,91,92). In some studies, these outcomes varied by anatomic lesion and surgeries (85,93), family income (83), and age (94,95,96). In the United States, obtaining employment, health insurance, and mortgages were noted as challenges in the United States (97), even for people with mild heart defects (98). Unsurprisingly, given the complexity of the issues and the variability of methods and focus, identifying simple or common predictors of quality of life has proven difficult. Only in a minority of studies quality of life was associated with the complexity of heart defects, type of surgery, duration of circulatory arrest, and number of surgical procedures (74). Support needs to be aimed not only at the child but also at parents and caretakers. Quality of life evaluation should be incorporated systematically in outcome evaluations in people with congenital heart defects—ideally, longitudinally and prospectively. From a research perspective, there is an ongoing need for validating and improving quality of life tools targeted at people of appropriate age with congenital heart defects, and those culturally appropriate and also including the caretaker perspective. Incorporating quality of life in outcome assessment will also provide a more realistic assessment of benefits of treatment and prevention. Outcomes: Gaps, Needs, Trends As one examines and interprets the available data on outcomes, it is crucial to be mindful of their gaps and limitations. Missing or biased information is a poor and potentially damaging basis for action. Gaps throughout the lifespan of people with congenital heart defects, include even such crucial issues of social justice such as health disparities; these need to be actively investigated and resolved. In addressing data-related gaps and needs, it is helpful to consider trends—in pregnancy terminations, early detection, risk factor distribution—that will likely affect the health impact and care of congenital heart defects in the near future and would therefore benefit from ongoing monitoring. Gaps Through the Lifespan The gaps in our knowledge of outcome is particularly evident when taking a lifespan perspective of the experience and needs of people with congenital heart defects (Fig. As children grow into adults, developmental outcomes, employment, and social integration become increasingly important. From a primary prevention perspective, the crucial period is in very early pregnancy, and in fact, before conception. Other key aspects such as quality of life and costs are probably best evaluated over an entire lifespan, especially as life expectancy continues to improve. As a consequence, gaps are greater and data quality is poor as the focus shifts forward into adult life, or backward into pregnancy and preconception. Birth and infancy experience the clinical urgency, personal drama, and substantial costs associated with diagnosis and early treatment. At the same time, data on these events are comparatively easy to collect— most encounters occur in a hospital or healthcare setting, followup is close, and databases are available. However, as one moves forward from infancy and childhood, measuring health outcomes become harder: not only the issues become more complex—involving quality of life, social integration, educational outcomes, and nonmedical costs—but typically they are captured incompletely, if at all, by commonly available data sources— for example, educational outcomes and quality of life are invisible to vital records, hospital discharge data, and most administrative data sets. As a consequence, the greatest information gaps are found precisely for those issues that are more complex and invest the greatest segment of the lifespan. At the same time, such an integrated, lifespan perspective is precisely what affected people, families, and health professional would need for comprehensive care and planning. It will require a long term and coordinated investment in people, systems, and resources. Typically, coding translates words from a clinical description into well-defined descriptive codes, which then can be used for data sharing and epidemiologic analysis. By moving from description to a limited set of codes, coding usually entails a loss of information. One challenge for a coding system is to retain the essential information while discarding the inessential. What is essential in one application may not be essential in others—information on surgical procedures or severity of a valvar stenosis is essential in an outcome study but less so in an etiologic study. Compared to coding, classification requires special attention to the purpose of the study or survey. The same (coded) cases can be classified differently depending on whether a study aims at evaluating the origin and causes of a heart defect (e. Typically a specific instance of a heart defect may be assigned several multiple descriptive codes, whereas in many classification systems there is an emphasis to try and map each instance to one primary heart defect group. Coding and classification are crucial because they are the basis for all epidemiologic analyses: decisions, inconsistencies, or errors in coding and classification can affect findings significantly. In fact, part of the challenge of comparing and aggregating data is the variation or uncertainty in coding and classification among different studies. Developmental available for rare, details and topic area mechanisms still complex conditions expertise for best use incompletely understood; 2. Freely available (102), this coding system has features that allow capture of clinical correlates and procedures. Clark (105,106), uses pathogenetic and mechanistic considerations (rather than anatomy or severity) to group most types of congenital heart defects in a few major analytic groups. In such studies, it is crucial to avoid defining groups so narrowly that each group has too few cases (thus losing statistical power and missing associations), while not incurring the opposite error, making groups so broad that heterogeneous conditions are lumped (thus also underestimating or missing associations). Because pathogenetic mechanisms (known or putative) are relatively few, sample size is increased while preserving the underlying homogeneity. In this system, each instance of congenital heart defects is assigned to one principal pathogenetic group (one baby, one classification), and these are ranked by presumed timing in development (Table 2. The purpose is to identify a subset of “pure” groups of heart defects, defined as simple phenotypes in individuals without extracardiac anomalies. By minimizing anatomic and pathogenetic heterogeneity, this approach aims at improving the ability to find meaningful associations with risk factors. Need to Describe by Person, Place, and Time The most useful information tends to be contextual—relevant to a specific population, place, and time.
The mean vessel diameter increased from 5 to 12 mm discount septra 480 mg otc, and there was lasting success buy septra 480mg low cost, with less than 0 purchase discount septra on-line. The number of complications from the procedure or the stents themselves was minimal. Phillip Bonhoeffer performed the first transcatheter pulmonary valve replacement in a human in 2000 (9), several thousand of these procedures have been performed worldwide. The valve is mounted on an 18-mm, 20-mm, or 22-mm BiB balloon, which is part of the specifically designed Ensemble delivery system. The valve is mounted within a stainless steel stent and comes in diameters of 23 and 26 mm, and as such can be used for larger conduits that would not be suitable for implantation of the Melody valve. However, prestenting is required to create a landing zone, due to the very short height of 14. This procedure also may be indicated for palliation in other congenital heart lesions in equally young infants, in whom all systemic, pulmonary, or mixed venous blood must traverse through a restrictive intra-atrial communication to return to the active circulation. These lesions include those complex single-ventricle defects associated with hypoplastic right or left ventricles and some instances of total anomalous pulmonary venous connection. It can be extremely hazardous in left- sided heart hypoplasia if the left atrium is diminutive, as there is a heightened risk of perforation or avulsion of atrial appendage or pulmonary vein. In such cases, static balloon dilation of the atrial septum may be preferable (59). In addition, balloon atrial septostomy can be accomplished successfully using an umbilical venous approach. For acute, temporary palliation, many of these procedures can be performed under echocardiographic guidance in the neonatal intensive care unit, but whenever possible, the availability of fluoroscopy in the cardiac catheterization laboratory adds an additional safety margin to the procedure. It requires the use of a 7-Fr sheath and is still in widespread use, even though newer catheter varieties offer more favorable balloon characteristics. Because of the single lumen it cannot be tracked over a wire and the fairly high compliance often requires large balloon inflations to successfully perform a septostomy, which is a considerable disadvantage especially in smaller infants under 3 kg. These balloons have the advantage of being noncompliant at inflation volumes of 1 or 2 mL, which is very important when attempting to tear, rather than stretching the atrial septum. The balloons also have the additional benefit of being able to be passed over a wire. While continually observed on fluoroscopy and/or two-dimensional echocardiography, the balloon is inflated with dilute contrast to the maximum diameter of the balloon or, in the smaller atrium, to the maximum diameter tolerated within the particular left atrium. It is essential to determine that the balloon is completely free within the left atrium before initiating the “jerk” across the septum. Failure to do so can result in laceration or even separation of the left atrium from the pulmonary veins. The balloon is pulled rapidly or, better stated, “jerked” across the atrial septum into the right atrium using as forceful and rapid, but at the same time, as short and controlled a pull, as possible. The entire procedure should be performed one to four times or until no resistance to withdrawal of the fully inflated balloon is encountered or until enlargement of the defect and looseness or “flipping” of the septum primum tissue are documented by echocardiography. Following a successful septostomy, there should be an immediate equalization or near equalization of pressures across the atrial septum. A collaborative study from 1978 to 1982 (60) demonstrated the safety and effectiveness of the blade procedure. The indications for blade atrial septostomy are the same as considered for a balloon septostomy or for surgical atrial septostomy that otherwise would be needed in the older infant. Both blade catheter sizes require a sheath one size larger than the catheter shaft for smooth introduction. Transesophageal echocardiographic guidance can add an additional safety margin to this procedure. In contrast to the balloon septostomy, the blade catheter is withdrawn slowly in a controlled but at the same time, forceful maneuver until the blade snaps through the septum. The “blading” is repeated four to eight times while changing the angle of extension of the blade as necessary and changing the blade direction from side to side until there is no further resistance to the withdrawal of the fully opened blade catheter. In most patients, this can be accomplished using the Rashkind balloon technique; however, in larger or older patients, when the septum is tough or resistant to tearing, the blade incision can be extended by the use of static dilation balloons placed in the defect and inflated. The resultant defect will be somewhat smaller than the balloon or balloons used for dilation, so the balloon catheters must be oversized relative to the final defect diameter desired. As a result of the combined blade and ballooning, equalization of pressures between the two atria as well as a measurable increase in the mixing of the systemic and pulmonary venous blood should occur. Stenting of the atrial septum has been performed in a few cases to ensure a lasting opening. The blade atrial septostomy can be accomplished in patients of any age or any size. The smaller the pre-existing septal defect, the higher the likelihood that the use of cutting balloon will achieve an adequate result (Fig. If the existing intra-atrial communication is stretched then cutting balloon septoplasty may be unfeasible, and it may be more beneficial to perform a transseptal puncture to start with a “fresh” diminutive opening to facilitate a better result of cutting balloon atrial septoplasty. Transseptal Puncture Access to left heart structures is required at times to obtain accurate left atrial pressure recordings, or to facilitate interventional procedures such as the creation or closure of an intra-atrial communication P. In addition, access to left heart structures from a venous approach avoids the use of larger sheaths in the femoral artery, which can be especially beneficial in small children and infants. The wire is withdrawn and the transseptal needle is advanced through the sheath to a position just 1 to 2 mm below the tip of the dilator. On occasions difficulty can be encountered when introducing the transseptal needle through the hub or dilator and sheath, at which point the two components should be are separated temporarily by 1 to 2 cm to allow passage of the needle through the hub. Once the needle has been positioned appropriately, the whole system needs to be flushed and the needle connected to a pressure monitoring system. There is usually a 1 to 2 cm separation between the needle and the hub of the dilator and care has to be taken to maintain this distance throughout the procedure. Any harsh movement or torque should be avoided at this stage as it can create injury to adjacent vessel or chamber walls. Once the unit has passed about 2/3 of the atrial septal length inferiorly, one often notices the tip of the dilator suddenly moving slightly to the left while advancing into the fossa ovalis. At this stage, sheath dilator and needle are withdrawn inferiorly for a further few millimeters just below the limbus of the ovale fossa. At this point, sheath and dilator are fixed while the needle is advanced slightly out of the tip of the dilator until it fully engages the dilator. At this point the whole unit is advanced while carefully observing the recorded pressure tracing, and maintaining a left and posterior direction. The operator usually feels a slight “pop” when the needle traverses the atrial septum and this should be followed by the emergence of left atrial pressure tracing. If any untoward resistance or inappropriate pressure tracings appear, the operator should stop any advances of needle, sheath, and dilator. If a position is unclear, a small amount of contrast can be instilled through the needle. This is performed in very diminutive steps while maintaining careful observation for left atrial pressure tracings.
Some neonatal seizures are considered idiopathic because no cause can be identified septra 480 mg line, and no long-term sequelae ensue order discount septra on line. Many of these infants are thought to have benign neonatal convulsions buy septra overnight, more recently referred to as benign idiopathic neonatal seizures (Plouin, 1990, 1992; Plouin and Anderson, 2002). The seizures are usually brief, most often clonic, and have their onset between days 4 and 6 of life. Benign familial neonatal convulsions have a pattern of autosomal transmission based on a locus on chromosome 20 (Leppert et al. Singh and colleagues (1998) identified a submicroscopic deletion of chromosome 20q 13. This disorder is now considered to be one of several epileptic disorders characterized as a channelopathy (Noebels, 2001; Leppert, 2001). Benign familial neonatal convulsions had been considered to be benign because initial reports suggested no long-term neurologic sequelae. However, subsequent studies indicate that not all affected infants have normal outcomes (Ronen et al. The catastrophic syndromes are compared in Table 7-3 and recently were reviewed by Aicardi and Ohtahara (2002). Neonatal seizures: Early-onset seizure syndromes and their consequences for development. Ment Retard Dev Disabil Res Rev 2000;6:240-241, with permission; based on data from Aicardi J, Ohtahara S. However, in the neonate, interictal epileptiform discharges are rarely present to aid in diagnosis. Despite this caveat, isolated sharp waves may arise in the same region of eventual electrical seizure onset, and in these exceptional instances, they are considered epileptiform (Fig. The character of the background activity will provide information concerning the degree, if any, of brain injury and will provide the basis for consideration of possible diagnoses and prognosis (Bye et al. The character of the background activity also may be helpful in the diagnosis of specific epileptic syndromes. This pattern is characterized by generalized theta activity that is occasionally associated with sharp waves. This activity is frequently asynchronous on the sides and occurs discontinuously or in a pattern that alternates with periods of generalized voltage attenuation. Theta pointu alternant may be present for several days after seizures have resolved. However, it can be associated with well-defined etiologies as well as the syndrome of benign neonatal convulsions. Electrical seizures are often characterized in terms of their evolution of appearance. The minimal duration of a discharge to be considered an electrical seizure has been defined as 10 seconds (Clancy and Legido, 1987), although this is admittedly arbitrary, and discharges of similar appearance but slightly shorter duration may have the same significance as those of 10 seconds (Oliveira et al. With increasing age, however, electrical seizure activity becomes more frequent and of longer duration (Scher et al. All electrical seizure activity in the neonate begins focally, except for the generalized activity associated with some types of myoclonic jerks or with infantile spasms. The region of cortical involvement of the electrical seizure activity will determine the motor manifestations of the clinical seizures. The rate of repetition of the discharge will determine the rate of focal myoclonic and focal clonic activity: slower discharges are associated with slow myoclonic movements (Fig. Smaller muscle groups, with smaller degrees of excursion, may move more quickly in response to rhythmic discharges than do larger muscle groups. Site of Onset Electrical seizure activity in the neonate most often arises in the central (Fig. Focality Most often, in an individual infant, electrical seizure activity is unifocal—always arising from the same brain region. Seizures also may arise from more than one focal area so that, for example, the electrical seizures may arise from different foci at different times. They also may arise from two or more foci at the same time, but with the two foci firing asynchronously (Figs. Frequency, Voltage, and Morphology Frequency, voltage, and morphology may vary greatly within the same electrical seizure or from one seizure to the next in a given infant. The predominant frequency in a given seizure can be in the alpha, theta, beta, or delta ranges, or a mixture of these. The morphology of the electrical activity also may vary, consisting only of spikes of various durations, sharp waves, slow waves, or combinations of the waveforms within a given seizure. Examples of the variability of frequency, voltage, and morphology are shown in Figs. Involvement of Specific Brain Regions An individual electrical seizure, once begun, may be confined to a specific region (Fig. Spread may be by a gradual widening of the focal area; by abrupt change from a small regional focus to involvement of the entire hemisphere; by migration of the electrical seizure from one area of a hemisphere to another (either in a jacksonian, but most often, in a nonjacksonian fashion); or from one hemisphere to the other. Evolution of the Discharge Some electrical seizure activity may begin abruptly with similar frequencies, voltages, and morphology that remain fairly constant throughout the seizure. However, more often, seizures undergo an evolution in appearance with their character changing throughout its course (Figs. The changing character throughout an electrical seizure helps in differentiating other nonepileptic rhythmic activity or artifacts from electrical seizure activity. Special Ictal Patterns Some unique ictal patterns occur in neonates with severe encephalopathies: electrical “seizures of the depressed brain” and “alpha seizure discharges. The discharges are typically low in voltage, long in duration, highly localized, may be unifocal or multifocal, and show little tendency to spread or otherwise change (Kellaway and Hrachovy, 1983). The sudden but transient appearance of rhythmic activity in the alpha frequency band is referred to as alpha seizure activity (Knauss and Carlson, 1978; Willis and Gould, 1980; Watanabe et al. This pattern is characterized by the sudden appearance of rhythmic 8- to 12-Hz, 20- to 70-μV activity typically in one temporal or central region; however, it also can evolve from activity that is more clearly epileptic. In addition, it may occur simultaneously, but asynchronously with other electrical seizure activity (Fig. Its presence is indicative of a severe encephalopathy and suggests a poor prognosis. Generalized Electrical Seizure Patterns Electrographic events that are considered generalized seizure patterns are rare in the neonate and are associated with only a few specific clinical seizure types. Electrical Seizure Activity and Medication Effects The most important effect medication may have on electroclinical seizures is the elimination of clinical seizures while electrical seizures persist. In addition to the occurrence of both electrical seizure activity of the depressed brain and the paroxysmal alpha pattern (e. This may result first in control of the clinical seizures with persistence of the electrical seizure (Fig.