Nursing Diagnoses in Children With Congenital Heart Disease: A Survival Analysis
By Silva, Viviane Martins da de Oliveira Lopes, Marcos Venicios; de Araujo, Thelma Leite
PURPOSE. To analyze the relationship between nursing diagnoses and survival rates in children with congenital heart disease. METHODS. A total of 270 observations were carried out in 45 children with congenital heart disease who were followed for 15 days.
FINDINGS. Differences in mean survival times were identified in children not more than 4 months of age with respect to the following diagnoses: impaired gas exchange, ineffective breathing pattern, activity intolerance, delayed growth and development, and decreased cardiac output.
CONCLUSIONS. The main diagnoses are identified early in the hospitalization period and are conditions resulting from hemodynamic alterations and prescribed medical treatment.
IMPLICATIONS FOR NURSING PRACTICE. Congenital heart disease provokes serious hemodynamic alterations that generate human responses, which should be treated proactively.
Search terms: Congenital heart disease, nursing diagnoses, nursing judgments, pediatric nursing
PROPOSITO. Analisar a relacao entre diagnostics de enfermagem e razao de sobrevida em criancas com cardiopatia congenita.
METODOS. Foi efetuado um total de 270 observacoes junto a 45 criancas com cardiopatia congenita, que foram acompanhadas por 15 dias.
ACHADOS. Diferencas nos tempos medios de sobsrevivencia foram identificadas em crianqas menores de 4 meses relacionadas aos seguintes diagnostics: troca de gases prejudicada, padrao respiratorio ineficaz, intolerancia a atividade, atraso no crescimento e desenvolvimento e debito cardiaco diminuido.
CONCLUSOES. Os principals diagnostics foram identificados precocemente no periodo de hospitalizacao e eram condicoes resultantes das alteracoes hemodinamicos e do tratamento medico prescrito.
IMPLICACOES PARA A PRATICA DE ENFERMAGEM. A cardiopatia congenita provoca serias alteracoes hemodinamicas que geram respostas humanas, as quais devem ser precocemente tratadas.
Palavras chave: Cardiopatia congenita, diagnostico de enfermagem, enfermagem pediatrica, julgamento
An adequate health evaluation of children with congenital heart disease is essential to the quality of their care. Early diagnosis and palliative or corrective surgical treatment can improve the survival of children with congenital heart disease. Miyague et al. (2003) studied the survival curves of newborn infants with these alterations. Those who had cardiac surgery demonstrated a general survival rate of 51%. The children who had palliative surgery had longer survival times than those who had corrective surgeries.
The unpredictability of children’s conditions and the lack of progress in their development are factors that, besides provoking physical responses, modify family relationships (Garcia, Jimenez, Silva, Rodriguez, & Canelo, 2002). Therefore, there are various issues in the care of children with congenital heart disease and it is difficult to predict the care required resulting from hemodynamic alterations, changes in the child’s physical development, and the family’s reactions to the diagnosis and to the child’s clinical evolution. All these limitations provoke different human responses, which may change over time. The assessment of a human response at a single point in time represents only a partial view of the problem.
Some of the existing follow-up studies on the human responses exhibited by these children focus on the nursing diagnoses and problems associated with congenital heart disease, such as imbalanced nutrition, less than body requirements, risk for infection, ineffective airway clearance, impaired gas exchange, hyperthermia, risk for imbalanced body temperature, acute pain, delayed growth and development, disturbed sleep pattern, risk for constipation, and impaired skin integrity (Guerriero, Almeida, & Guimaraes, 2003; Rodrigues, Castro, & Dias, 2003; Ruiz, 2003). These are cross-sectional studies that evaluate the diagnostic profile at one particular moment during the period of hospitalization. No studies were found that analyzed the evolution of nursing diagnoses and their possible modifications over time. It is important to evaluate this aspect in order to provide care that is directed toward the real needs of these children, and to establish clinical priorities. Nursing diagnoses have been used in several countries, but nurses are not yet familiar with the stages involved in diagnostic reasoning (Lee, 2005; Silva, Lopes, & Araujo, 2004a). The purpose of this study was to analyze the survival of children with congenital heart disease in relation to nursing diagnoses.
A prospective study focused on the evolution of diagnoses in children with congenital heart disease in a hospital that specialized in cardiac and pulmonary diseases. Ethical approval was obtained from the Institutional Review Board prior to initiation of the study. Before data collection, signed informed consents were obtained from all parents and guardians after the research team guaranteed the confidentiality of information and identities.
Forty-five children with congenital heart disease with ages not more than 1 year who had not been submitted to definitive or palliative surgical correction were followed during 15 days of hospitalization. The sample size was defined based on a confidence coefficient of 95% (z^sub alpha^ = 1.96), power of 80% (z^sub beta^ = 0.84). The estimated proportion of nursing diagnoses was based on results reported in a previous study (p = .7) and focused on nursing diagnoses with the highest prevalence (Silva, 2004a,b). The difference in the proportion between children with and without priority nursing diagnoses was estimated to be 40% (d = 0.4). This was determined from the mean difference among the prevalence of the more frequent diagnoses (63.63%) and the prevalence of the other diagnoses found (26.98%) (Silva et al., 2004a,b).
In the institution in which the study was conducted, children not more than 1 year old comprised the age group with the greatest frequency of hospitalization. A minimum hospitalization period of 48 hr was chosen to avoid losses during data collection. The average period of hospitalization was 20 days. To avoid loss to follow-up during data collection, a minimum follow-up period of 15 days was established for participation in the study.
Children who did not undergo a minimum follow-up period of 15 days and/or whose parents/guardians were unable to provide all the required data were excluded from the study.
The data collection instrument was calibrated according to eight parameters as determined by the NANDA International (2004), which includes the following physical and physiologic human response patterns: nutrition, elimination, activity/rest, perception/ cognition, coping/tolerance to stress, safety/protection, comfort, and growth/development. Other parameters were excluded and considered as inappropriate for the population of this age group. The instrument was pretested by carrying out a pilot test in five children with congenital heart disease similar to those followed in this study.
The data collection instrument consisted of a clinical interview technique, followed by clinical examination and consultation regarding the results of biochemical and radiological examinations, together with the prescriptions and follow-up reports from all the healthcare professionals in the institution.
In the follow-up period, diagnostic evaluations were performed at 48-hr intervals for a total of 270 observations. The diagnostic procedure of elaboration and inference followed the stages proposed by Gordon (1994). In the diagnostic inference process, the clinical assessment was individually evaluated by the authors, who have experience in the development of studies on nursing diagnoses. When all the appraisers were in agreement, the diagnosis was accepted. If there was disagreement among the appraisers, the diagnosis was reevaluated based on the clinical data, until consensus was obtained. In all cases, diagnoses were identified by direct observation of signs and symptoms, from hospital records compiled by the health team and by information provided by the family.
The data were expressed as percentages, confidence intervals (95%), and quartiles for nominal data. In this study, survival was considered to be the nonoccurrence of the nursing diagnosis. Based on this definition, a life table was constructed with data that were analyzed using the Kaplan-Meier method. Life tables are used to synthesize the health status of a group of individuals and identify the occurrence rates of a given endpoint in a population over a certain period of time (Pagano & Gauvreau, 2000). The Kaplan-Meier method is used in cases in which the nonoccurrence of the endpoint during different periods is possible. It is a nonparametric technique that uses the exact time of survival of each individual in the sample instead of grouping the time in intervals (Dawson & Trapp, 2001). This study included the children who developed the diagnosis in each observation period, the children who did not develop the diagnosis in each period and in the period as a whole, and the mean survival time of the children for each diagnosis. The survival rates for each diagnosis were analyzed separately and compared with survival, in relation to gender and age. The children were divided into two groups according to age: not more than 4 months and more than 4 months. The log-rank test was applied to calculate the mean difference in survival time for each group. This test is used to compare the distributions of survival time of two groups with the objective of determining systematic differences between them (Hosmer & Lemeshow, 1999; Lee & Wang, 2003). Results
Children’s ages ranged from 9 days to 11 months (M = 4.74, SD = 3.78 months). With respect to gender, 66.7% were male. The majority (97.7%) were delivered naturally, (59.1%) following a gestation that ranged from 38 to 42 weeks. There were no records of delivery by forceps or postterm births.
Acyanotic heart disease was present in 53.3% of all patients (95% CI 37.9-68.3%), while cyanotic heart disease affected 46.7% (95% CI 31.7-62.1%). With respect to the number of primary diagnoses, 57.8% of the children had two or more congenital heart defects. The most common diagnoses were ventricular septal defect (28.9%), atrioventricular septal defect (28.9%), atrial septal defect (15.6%), patent ductus arteriosus (26.7%), coarctation of the aorta (17.8%), and tetralogy of Fallot (13.3%). The group of acyanotic heart defects was composed of septal defects alone or in association with other acyanotic defects, patent ductus arteriosus, coarctation of the aorta, and pulmonary valve stenosis. The cyanotic defects comprise the following: tetralogy of Fallot, anomalous pulmonary venous return, transposition of the great arteries, pulmonary atresia, tricuspid valve atresia, and truncus arteriosus (Table 1).
A total of 21 different nursing diagnoses were identified in the 45 children followed in this study. The distribution of nursing diagnoses identified in the children enrolled in this study is shown in Table 2.
Table 3 consists of a summary of the survival of children with congenital heart disease in relation to the development of the eight main nursing diagnoses in the intervals from 0 to 15 days. About 88% of the children developed impaired gas exchange in the first two follow-up days. This finding indicates that 7% of the children with congenital heart disease were not diagnosed with impaired gas exchange during the 15 days of follow-up.
Seventy-three percent of children developed “ineffective breathing pattern” in the first 48 hr. Some children achieved remission of this diagnosis within a period of 12 days. The remissions were characterized by negative life table values and they influenced the temporal distribution of the diagnosis. The mean survival time for this diagnosis was 3 days, and only 13% of the children with congenital heart disease did not develop it.
Diagnosis of “activity intolerance” also occurred early in the follow-up period of children with congenital heart disease. According to observations, children who had “risk for activity intolerance” at the beginning of the follow-up period developed this intolerance between the 4th and the 10th day of observation.
These data indicate that “risk for infection,”"delayed growth and development,” and “ineffective tissue perfusion,” occurred early during follow-up and remained present throughout hospitalization. “Risk for infection” developed in 82% of the children and resulted in a mean survival time of 4 days. “Delayed growth and development” was absent in 22% of the children, and the survival for that diagnosis was 5 days. About 71% of the children developed “ineffective tissue perfusion” within 2 days, and the mean survival time for this diagnosis was 6 days.
Sixty-two percent of the children developed “decreased cardiac output” within 2 days. Remission occurred after 8-10 days. The mean survival time for that diagnosis was 7 days, and the diagnosis was absent in 36% of the children. “Ineffective airway clearance” was initially present in 31% of the children, and the mean survival time was 8 days (see Table 3).
No differences were found in survival times between genders for any of the nursing diagnoses. However, for “impaired gas exchange,”"ineffective breathing pattern,”"activity intolerance,”"delayed growth and development,” and “decreased cardiac output,” differences in survival time were found according to children’s age.
Children over 4 months old developed “impaired gas exchange” later (p = .0228). The older children also manifested “ineffective breathing pattern” (p = .0001), “activity intolerance” (p = .0481), and “decreased cardiac output” (p = .006) later. “Delayed growth and development” occurred earlier in this group (p = .0261).
An epidemiological study involving children and teenagers with congenital heart defects showed that diagnosis is more frequent (in 71.5% of the children evaluated) during the neonatal and lactation periods (Miyague et al., 2003). Silva et al. (2004a) reported similar findings to those described in this study with respect to age and gender. Despite the greater proportion of male children in this study, a difference was detected between genders in the prevalence of congenital heart disease with respect to the different defects diagnosed. Some of these defects were found to be more frequent in girls (Hockenberry & Tashiro, 2005).
Impaired gas exchange due to ventilation-perfusion imbalance in the presence of alveolar and interstitial exudates is frequently found in children suffering from acyanotic lesions. This is due to the potential complication of pulmonary hypertension. Studies show that impaired gas exchange is more severe in heart conditions that involve an increase in pulmonary blood flow, when cyanosis is more intense (Flores & Gallardo, 1997; Ramirez et al., 2001).
A cross-sectional study performed by Silva et al. (2004b) failed to identify “impaired gas exchange” in children with congenital heart disease. The lack of specificity of some defining characteristics and the absence of tests that confirm others make the identification of this diagnosis difficult. The imbalance in the ventilation-perfusion ratio due to the presence of right-left shunt is the main factor related to “impaired gas exchange” (Almeida, 1994).
Ineffective breathing pattern was manifested by low oxygenation in the alveolus-capillary membrane and pulmonary edema that increased respiratory effort and reduced pulmonary compliance. Alterations in rhythm and respiratory frequency are caused by hypoxemia, pulmonary congestion, or both (Flores & Gallardo, 1997). The failure of this mechanism and the resulting oxygen supply and demand imbalance induce the onset of this symptom.
These data are consistent with the time analysis of these diagnoses in which impaired gas exchange increases at an early stage in a high proportion of patients within a short time interval. However, ineffective breathing pattern, despite its early onset, was present in fewer patients and the frequency of this diagnosis tended to increase initially and diminish after 10 days.
In addition to these conditions, “impaired gas exchange,”"ineffective tissue perfusion,”"decreased cardiac output,” and “delayed growth and development” were observed simultaneously in children with congenital heart disease. The presence of impaired gas exchange and the mechanical reduction of blood flow imposed by the heart disease led to the nursing diagnosis of “ineffective tissue perfusion.”
Diagnosis of ineffective tissue perfusion was difficult since the characteristics that define this condition are common to other diagnoses. The literature refers to four principal clinical signs present in children with congenital heart disease: heart murmur, cyanosis, tachypnea, and heart arrhythmia (Amaral, Granzotti, Manso, & Conti, 2002). These symptoms are related to poor perfusion and to decreased cardiac output.
Studies show that the occurrence of low heart rate and low arterial pressure is rare in children with decreased cardiac output (Goncalves, Caramuru, & Atik, 2000). The cases of decreased cardiac output found in this study are parallel with the findings reported by Silva and Silva (2000). According to these authors, signs of decreased cardiac output include irritability, diaphoresis, paleness, poor peripheric perfusion, and cold extremities. It is important to emphasize that some characteristic signs of decreased cardiac output, such as dyspnea, fatigue, and syncope, may be detected even in adults with congenital heart disease (Attie, 2001).
Activity intolerance occurred in a majority of the children with congenital heart disease. Failure in oxygenation and increased cardiac and respiratory effort increase the body’s oxygen consumption. Therefore, the greater the oxygen supply and demand imbalance, the greater the symptoms manifested during activities (Silva et al, 2004b). In the case of newborns and infants, maternal breast- or bottle-feeding constitutes the only real physical activity. Older infants, however, may also present characteristics, such as accentuated respiratory discomfort and alterations to heart and respiratory frequency, when crying or evacuating (Flores & Gallardo, 1997).
In some children, it was difficult to reach a diagnosis of delayed growth and development despite the fact that they had abnormal physical growth or motor development. In these cases, identifying the true diagnosis and evaluating risk seemed inadequate in view of the diagnostic definitions; therefore, the authors opted for the definition of delayed growth and development.
At birth, the weight and height of children with congenital heart disease are normal or close to normal, and Apgar scores are generally high. However, the weight for height index falls rapidly due to adverse circumstances, principally when cyanotic heart disease is present (Chen, Li, & Wang, 2004; Staebel, 2000). In this study, the weight for height, weight for age, and height for age ratios were close to the lower limits of normalcy. Moreover, these children presented difficulty in performing the psychomotor activities that are normal for their age. Miyague et al. (2003) found significant differences in the weight and height of children with congenital heart defects when compared to healthy children (p
Ineffective airway clearance was present in conditions such as pulmonary edema of cardiac origin. In these cases, the production of secretions is a reaction of the lung to the increase in blood volume in the interstitial and alveolar spaces (Lopez, 2004). Although no difference in survival times with respect to this diagnosis was observed, children up to 1 year of age have difficulties clearing the airway lumens due to an immature cough mechanism and inability to expectorate (Hockenberry & Tashiro, 2005). A search of the relevant literature failed to find any specific studies regarding this diagnosis in children with congenital heart disease.
The difference in survival time in relation to the nursing diagnoses and the variation in age may be explained by the cardiac and hemodynamic changes that occur following birth. Changes such as the onset of breathing, decrease in pulmonary resistance, closure of the fetal airways such as the arterial canal, increase in pulmonary venous return, increase in systemic vascular resistance, and pressure in cardiac chambers determine that heart disease which is well tolerated in the fetus becomes apparent after birth. The transformation from fetal to neonatal circulation activates different cardiac reserve mechanisms, leaving the system more vulnerable to decompensation (Goncalves et al., 2000). In this period of greater fragility of the child, the compensation mechanisms do not respond satisfactorily to the needs of the organism. Based on these conditions, diagnoses may include impaired gas exchange, ineffective breathing pattern, activity intolerance, and decreased cardiac output.
With respect to the possible limitations of this study, the data analyzed in the life table should be considered carefully when attempting to predict the proportion of diagnoses of children hospitalized for longer periods. A limitation of the study is that the different types of congenital heart disease were not considered in this study. However, congenital heart disease was classified as cyanotic or acyanotic, and no differences were found in survival times of nursing diagnoses between the two conditions.
Other follow-up studies should be developed in this type of population in other countries so that specific characteristics such as growth and development that may differ substantially between developed and developing countries may be compared. Further research should be carried out to identify the factors that contribute to establishing these symptoms. Furthermore, interventions for these diagnoses, across time, should be investigated.
Knowledge about the survival rates of these children in relation to nursing diagnoses contributes to the ability to choose interventions guided by diagnostic decisions, which facilitates the choice of more adequate actions and allows for better prognoses. Nursing actions should focus on human responses related to hemodynamic alterations that appear at an early stage and with high proportions, requiring greater attention by the nursing team. These nursing diagnoses also suggest that the child’s health state is more severe. Children up to 4 months of age present diagnoses related to the harmful effect of these conditions on cardiac function and to the immaturity of the respiratory system. Moreover, nurses need more accurate information to assess the progression and stage of the heart problem, with a view to identifying human responses and factors related to growth and development in this population.
Life table analysis revealed that the diagnoses for impaired gas exchange, ineffective breathing pattern, activity intolerance, and risk for infection were made early in the hospitalization period of children with heart disease. No statistically significant differences in survival times were found between genders; however, age was an important factor. Children up to 4 months of age were diagnosed early with impaired gas exchange, ineffective breathing pattern, activity intolerance, and decreased cardiac output. These diagnoses relate to the harmful effects of these conditions on cardiac function and to the immaturity of the respiratory system. However, diagnosis of delayed growth and development was made in children over 4 months of age, confirming the findings of previous investigators, who reported a greater effect on growth and development due to the progressive decrease in tissue oxygenation and the increase in energy expenditure to supply requirements.
Acknowledgment. Financial support for this research was provided by Coordenacao de Aperfeiqoamento de Pessoal de Nivel Superior (CAPES) and Conselho Nacional de Desenvolvimento Cientifico e Tecnologico (CNPQ-Processes 50639/03-5, 304448/2004-4 and 620138/ 2004-1).
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Viviane Martins da Silva, RN, Marcos Venicios de Oliveira Lopes, PhD, RN, and Thelma Leite de Araujo, PhD, RN
Viviane Martins da Silva, RN, is a doctoral student and Nursing Professor at the Catholic Faculty Rainha do Sertao, Brazil; Marcos Venicios de Oliveira Jjopes, PhD, RN, and Thelma Leite de Araujo, PhD, RN, are Nursing Professors at the Federal University of Ceara, Brazil.
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