Editorial

Psychocardiology, Pediatric Neuropsychology and Health Policies in Cardiovascular Rehabilitation in children with congenital cardiopathies

0000-0003-3114-4624Teresa Rodríguez Rodríguez^{1  *}  , 0000-0002-8057-7082Silvia Susana Zamora Martell²  , 0000-0002-9774-959XJuan José Navarro López³ 

¹Universidad Metropolitana del Ecuador, Quito, Ecuador.

²Universidad Indoamericana del Ecuador, Quito, Ecuador.

³Hospital Universitario Dr. Gustavo Aldereguía Lima, Cienfuegos, Cuba.

Children have the right to receive quality health care, but it is even more important and necessary when children are born with anomalies or illnesses that require prompt and accurate responses for integrated health care. Among this disease group are congenital heart diseases.

Congenital cardiovascular malformations can be due to an embryonic developmental alteration in a normal structure or to a failure in progression of this structure after an early phase of embryonic or fetal development. They are due to an error in the heart or surrounding blood vessels formation. ⁽¹

According to the congenital heart disease type and severity, there are different physical and psychological sequels, which are also associated with other factors such as medical care experiences, hospitalization, family handling, socioeconomic status, the characteristics of social environment and educational facilities that these patients assist, becoming causes or reinforcements of different psychic manifestations. ^(2,3,4

Goldberg CS, et al., found in children with complex congenital conditions at ages 3 and 6 years who had low problem-solving skills, poor social and personal abilities, ⁵⁾ while in another report it has been affirmed that neurodevelopmental problems affect 50% of children with CC who are going to be surgically treated, suffering from complications associated with the disease such as, seizures, cognitive disability, language delays, delays in visual-motor and visuospatial coordination, attention deficit hyperactivity disorder (ADHD) and learning problems, ⁽⁶ being ADHD four times more frequent in large vessel transpositions than in the normal infant population. ⁷

These patients are early exposed to situations that may cause injury to vulnerable areas to hypoxia, highlighting the brain, this causes damage to sensitive areas such as the prefrontal cortex and the striatum, associated with the executive control, attention and learning difficulties, greater behavioral alterations were observed than in general pediatric population, ⁸⁾ which may lead to an increase in neurodevelopmental disorders and psychiatric conditions, impulsive behavior and autism spectrum disorders, with repercussions in the school sphere; with greater implication in children with cyanotic congenital cardiopathies when it is proved that they obtain below average scores in some neurodevelopmental areas (language and motor) and higher affectation of life quality in general. ^4,3,9

Different anxiety expressions are associated with these conditions, depression, psychological conflicts, low self-esteem and self-valuation that reinforce the academic difficulties of the children and later crystallize into a personality that is being formed under special living conditions ^4,10) these and other characteristics place these children into risk groups in order to manifest neuropsychological and psychosocial damages that affect their life quality, of other family members and transcend to later stages of development. For these reasons, it is recommended that these patients be involved in the cardiovascular rehabilitation process at an early stage which establishes the biological, psychological and social aspects of care during the whole of life, according to the rehabilitation phases through which these patients transit. ^4,10,11

All the scientific evidence on the subject demands to intensify the research and early intervention with these patients and profile the diagnosis of alterations in the psychological and neuropsychological order, to determine the damages or vulnerabilities in order to define and plan the neuropsychological rehabilitation (intervention), according to the existing organic and psychic damage, with the objective of preventing school failures, frustrations, demotivations and even school denial.

They will be guided by the psychocardiologist and neuropsychologist participating in the multidisciplinary team, with the intention of minimizing the risk of disability and handicap, to facilitate social reincorporation in the most appropriate conditions, that facilitates their adaptation to the family, collective and productive life demands and supports them in their personal growth. ⁴

However, it is an underexplored field in multidisciplinary interventions terms, the existing ones mainly deal with the physical component of this process, no scientific evidence has been found to establish the guidelines about cardiovascular rehabilitation programs with these characteristics in cardiopathic children, that also contemplate their neuropsychological rehabilitation, considered of high relevance to try to homogenize the interventions and minimize damage or restore existing ones through rehabilitation actions. ⁴

A systematic review on the management of patients with congenital cardiopathies concludes that strategies are needed to overcome administrative barriers and an analysis of the resources required for its implementation, the same report also describes that a high percentage of U.S. family Physicians questioned did not know about the recommendations of the American Heart Association/ American Academy of Pediatrics referring to this type of patient, and in addition, there are no similar studies in other countries, therefore, these limitations may be present in Latin American contexts. ¹¹

On the basis of what has already been referred to in the congenital cardiovascular conditions scenario, it is urgent to establish a meeting point between Psychocardiology and Pediatric Neuropsychology. Rodríguez Rodríguez T, et al. They include within the Psychocardiology concept the multidisciplinary intervention, which emphasizes, among other things, the intervention in the neuropsychological dimension in patients affected by cardiovascular diseases, with a look towards children with congenital cardiopathies, due to the affections that these conditions can bring with them in cognitive processes in full development. Based on these considerations, Psychocardiology has presented new theoretical arguments in this psychological dimension. ⁴

Articulated interventions will favor the cognitive rehabilitation processes whose etiology is based on the congenital cardiopathy type and the treatments applied to achieve clinical stability of the disease and the prevention of new complications due to socio-psychological factors with learning repercussions in these children, which may contribute to guide the teaching from the individuality of each one of them, particularizing possible disorders and present deficiencies, while enhancing the conserved spheres. ^4,11,12

When rehabilitative intervention is being planned, it must be preceded by a diagnostic phase to identify the existence or not of cognitive damages, emotional and behavioral problems in these patients and subsequently design action schemes adjusted to identified needs; for this purpose, different psychological tools can be applied:

• Psychological interview: Minor neurological signs, these translate the magnitude of maturational delay or brain dysfunction, pregnancy, childbirth and perinatal period clinical characteristics. Apgar test results should be consulted. ¹³

• The history of cardiovascular disease: Characteristics and congenital heart disease type, surgery types, complications, hospitalization periods, traumas, comorbidities.

• Family interview: Confirm family perception of characteristic traits of the child and behaviors, strengths and weaknesses, emotional disturbances, ability to interact with children and adults, empathy, social skills, rules acceptance, psychomotor development, specific learning difficulties inherent to the development stage, family management and dynamics and characteristics of parents or tutors.

Depending on the symptoms, signs and characteristics related to neurodevelopment, the professional in charge may indicate different tests or standardized exams and other non-weighted methods to corroborate the development of cognitive processes, as well as other techniques that search for emotional and behavioral information that may interfere in learning. ¹³

Once the neuropsychological diagnosis has been concluded, by means of the clinical method, intervention programs or actions should be designed according to the difficulties detected in every child, to be able to potentiate the preserved areas, to work on the deficient ones and to promote protective resilient qualities that will help them to a better facing with the disease during the whole life.

All this presumes periodic (longitudinal) evaluations to confirm the effectiveness and efficiency of the established actions, to evaluate progress and readjust, if it is necessary, the intervention programs designed. This process requires a close working relationship with Pediatric Cardiology, rehabilitation specialists, the school and the family. ⁴

In order to achieve these objectives, the need to create protocols with the participation of medical and non-medical professionals who harmonize their knowledge, adjusted to the claim for the very concept of cardiovascular rehabilitation in children with congenital cardiopathies. ^4,10,11

In children with congenital cardiopathies, in order to have an adequate neurodevelopment and a harmonious personality development, it is mandatory to take into account from early ages the difficult problems they have had to live with, the biological, psychological and social consequences resulting from the disorder and its complications and how these link together making patients very vulnerable people who require specialized and high quality care.

For neuropsychological rehabilitation for these patients, specialized human resources capable for designing intervention guidelines or protocols are required, where training is primordial to improve the learning process and its adaptation to different contexts, should always set the rehabilitation actions to be developed and give a margin to the acting specialist to personalize them according to his evaluation in the diagnostic process of the patient, including the inherent family characteristics, as its members are change agents and social support in the whole rehabilitation process. ¹⁰

For all of the mentioned reasons, the standardization of interventions becomes a necessity in the integral Cardiovascular Rehabilitation field of these patients and their families; must be developed on the basis of current scientific knowledge based on Psychocardiology, Neuropsychology, Pediatric Cardiology and Cardiovascular Rehabilitation. From this complementarity of knowledge, the quality and adjustment of these guidelines will be able to answer to the expectations and the needs of children with cardiopathies, with high quality standards for practical application in different contexts and countries, especially considering its importance and the great help it provides in dealing with the disease and recovering confidence and the necessary forces to develop a satisfactory daily activity. ¹²

The public health policies of each country should not be left out of these projections in the care of CC children, as they are the ones who define the response of governments to the conditions or circumstances that generate the needs in the population and make decisions for the health services consummation, they guarantee the full participation and cohesion of all elements in the society in concerted actions, emphasize, encourage, support rights and principles, actions and responsibilities so that every citizen has access to health care according to their needs. ¹⁴

The participation of public actors and authorities in the sector is a necessity to guarantee that all the determinants involved in the health-disease process are covered and particularly in vulnerable populations.

When there is lack of compliance on the part of the health sector with the demands of the population, limitations are generated that impede the implementation of benefits and services to reduce health inequities.

Children with congenital cardiopathies are included in the group of children with special needs, they require these opportunities to guarantee maximum social integration and the development of their potential, taking into account the effects of this disease in the physical and psychological order (includes cognitive, emotional and behavioral effects) and also of social order as it interferes in the relationship life, in daily life and family dynamics, this leads to consequences such as difficulties in their personal development, affecting the wellbeing, happiness and full self-realization of these patients and their families.

Let this reflection and analysis be useful for the health care of children with congenital cardiopathies, as a call to the scientific community and to public policies in every country to generate interventions that fulfill the requirements in the integral rehabilitation of these patients, with family participation, with the objective of optimizing their functioning to the maximum and reducing disability through systematic, standardized, scientific and humanistic actions.

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Received: September 12, 2023; Accepted: October 05, 2023

^*Autor para la correspondencia. Correo electrónico: [e-mail]

Los autores declaran no tener conflicto de interés.