Pediatric Cardiac Rehabilitation: a Review

Akamagwuna U, Badaly D. Pediatric Cardiac Rehabilitation: a Review. Current Physical Medicine and Rehabilitation Reports. 2019;7(2):67-80. doi:10.1007/s40141-019-00216-9

Link to Original Article: https://link.springer.com/article/10.1007/s40141-019-00216-9

Key Points

1. Children with cardiac conditions, such as congenital heart defects and cardiomyopathies, are at risk of neurodevelopmental and socioemotional maladjustment, prompting the need for rehabilitation programs to improve their physical well-being and psychosocial adjustment.

2. There are no established standards for pediatric cardiac rehabilitation programs, and the review identified 20 programs with different structures, including inpatient, outpatient, and home-based programs typically involving exercise training sessions to improve exercise capacity.

3. Children with congenital heart defects may experience delays in motor development and exercise intolerance, while those with cardiomyopathies are at risk of anxiety, depression, and quality of life concerns.

4. Cardiac rehabilitation programs for children typically focus on exercise training, but recent efforts also include cognitive rehabilitation to enhance the executive functioning skills of children with cardiac conditions.

5. Guidelines recommend physical activity, exercise training, and counseling for appropriate physical activity as core components of pediatric cardiac rehabilitation, addressing the physical health, activity levels, and socioemotional functioning of the patients.

6. Integrated multidisciplinary pediatric cardiac rehabilitation programs have been shown to benefit children by improving exercise capacity, cardiorespiratory outcomes, and psychosocial functioning while being tolerated with minimal adverse events. Home-based programs have shown potential to reduce the burden of transportation for families, but further research is needed to demonstrate sustained long-term benefits.

Introduction

The research paper highlights the risk of neurodevelopmental and socioemotional maladjustment in children with cardiac disorders, in addition to concerns about their physical health and activity levels. This has led to an increasing focus on rehabilitation efforts for these patients to improve their physical well-being and psychosocial adjustment. Unlike guidelines for adults, there are no established standards for rehabilitation programs applicable across children with cardiac conditions. The paper reviews recent studies on pediatric cardiac rehabilitation and presents the structure of the authors' own center's program. The aim is to contribute to the delineation of future guidelines for pediatric patients in need of cardiac rehabilitation.

Pediatric Cardiac Disorders

Congenital Heart Defects

The research paper highlights congenital heart defects (CHDs) as one of the most common birth defects globally, affecting around 1.35 million newborns annually. CHDs encompass a wide range of conditions categorized into cyanotic defects (oxygen-rich and oxygen-poor blood mix) and acyanotic defects (unaffected oxygen delivery). Children with CHDs face comorbid pulmonary and medical complications, motor development delays, and exercise intolerance, linking to perioperative morbidity and sedentary behaviors. Additionally, they are at risk of physical inactivity due to excessive activity limitation. Cardiac rehabilitation emphasizing increased physical activity and relevant education is suggested. CHD children are also at increased risk of early developmental delays, later cognitive dysfunction, poor quality of life, and neurodevelopmental disruptions attributed to brain dysmaturation, altered cerebral perfusion, and neurological injuries. The complexity of the heart defect is linked to the severity of neurodevelopmental concerns, with single ventricle lesions presenting particular risk. Children with CHDs may benefit from access to habilitation and rehabilitation services, particularly during acute care and follow-up interventions for functional impairments or developmental delays.

Table 1

Congenital heart defects and their clinical presentation and management

Cardiomyopathies

The research paper discusses cardiomyopathies in children, which occur in fewer than 2 per 100,000 cases. Cardiomyopathies are abnormalities of the ventricular myocardium that cannot be explained by abnormal loading conditions or heart defects, and can result from various factors such as coronary artery abnormalities, tachyarrhythmias, infections, toxins, and underlying disorders. Several subtypes of cardiomyopathies are outlined in the paper, along with their presentation and management.

The paper highlights that in many children with cardiomyopathies, medications and surgical options may be ineffective, with nearly 40% of symptomatic children requiring a heart transplant or facing mortality. Unfortunately, the time to transplant or death for children with cardiomyopathy has not improved over the past decades, and survival outcomes are not significantly better in economically advanced nations compared to developing nations.

Rehabilitation programs are suggested to potentially improve cardiac function and overall health in children with limited care options. Additionally, children with cardiomyopathies, particularly those progressing to heart failure, are at an increased risk of anxiety, depression, and quality of life concerns. Furthermore, those who require permanent ventricular assist devices or heart transplantation may experience mild neurodevelopmental disruptions.

The paper also mentions that cardiac rehabilitation programs have been successful in improving cardiac function, physical activity, emotional well-being, and quality of life in adults. Consequently, the paper suggests that children may similarly benefit from rehabilitation programs.

Table 2

Cardiomyopathies and their clinical presentation and management

Heart Transplantation

The research paper highlights key findings related to pediatric heart transplantation. It reveals that congenital heart defects (CHDs) are the most common indication for heart transplant in infants, while cardiomyopathies are more prevalent in older children. The median post-transplant survival varies with age at transplantation, with longer survival for those transplanted at a younger age. However, cardiac transplantation results in postganglionic denervation, leading to various physiological changes such as higher blood pressure, elevated heart rate, and decreased exercise duration. Consequently, cardiac rehabilitation is important for reestablishing physical health and activity levels. Additionally, infants and toddlers who undergo heart transplantation may experience mild delays in motor and cognitive development, similar to children with CHDs requiring early-life surgery. Older children, particularly those with cardiomyopathy, may exhibit mild cognitive deficits and are at risk of internalizing and externalizing distress. The paper emphasizes the significance of cardiac rehabilitation not only for regaining strength and mobility in the short term but also for maximizing the quality of life across the reduced lifespan of pediatric heart transplant recipients.

Pediatric Cardiac Rehabilitation

The research paper discusses the guidelines for pediatric cardiac rehabilitation compared to those for adults and older adults. The guidelines for adults and older adults include core components such as baseline assessment, health risk factor management (e.g., diabetes, hypertension, lipid levels), nutrition, exercise training, physical activity counseling, and psychosocial management. Similarly, pediatric cardiac rehabilitation focuses on managing physical health and activity as well as socioemotional functioning. Additionally, due to the key developmental tasks of childhood, there may be an additional focus on mitigating developmental and cognitive disruptions, which are not primary concerns during adult cardiac rehabilitation.

Addressing Physical Health and Activity

The research paper highlights that historical concerns about adverse effects of physical activity in individuals with cardiac conditions have been disproven, as exercise is not necessarily contraindicated. In fact, physical activity can be beneficial for those with cardiac conditions, promoting cardiorespiratory fitness, strength, flexibility, and metabolic health, while reducing morbidity, mortality, and hospital admissions. Exercise training has been outlined as a key component of cardiac rehabilitation for both adult and pediatric populations with cardiac conditions. Guidelines recommend a duration of at least 12 weeks, with individualized aerobic, resistance, and flexibility training. Centers should review patient progress weekly and progressively increase exercise workload. Education on appropriate physical activity is crucial, with guidelines emphasizing the need for at least 60 minutes of daily age-appropriate activity for children with congenital heart defects, and limitations on screen time. While exercise is beneficial for individuals with cardiomyopathies, it may be more restricted, and patients should avoid burst exertion, high-intensity free weight lifting, adverse environmental conditions, and exercise in non-equipped environments. Pediatric cardiac rehabilitation programs can also help establish nutrition plans and increase awareness of cardiac condition symptoms.

Addressing Cognitive and Socioemotional Functioning

The section "Addressing Cognitive and Socioemotional Functioning" discusses the impact of cardiac rehabilitation programs on the cognitive and socioemotional functioning of pediatric patients with cardiac conditions. The paper highlights the importance of mental health professionals in assessing and addressing the psychosocial needs of pediatric patients and their families throughout the rehabilitation process. It emphasizes the role of psychological interventions, such as motivational interviewing, behavioral management therapy, and cognitive-behavioral therapy, in promoting healthy behaviors and addressing distress associated with critical illness. The paper also suggests that psychological interventions may benefit both physical and psychosocial health, citing evidence of improved physiological measurements with the inclusion of stress management components in rehabilitation programs. Furthermore, it emphasizes the importance of identifying and addressing disruptions in developmental milestones and cognitive abilities through developmental and neuropsychological assessments.

Rehabilitation Programs

The research paper examined 20 cardiac rehabilitation programs outlined in 26 reports, with inclusion of patients under 18 years of age. Despite limited studies and consistent findings, programs with both pediatric and adult patients were not excluded. The review incorporated randomized control trials and investigations without control groups due to the emerging nature of the literature, while excluding case studies and unpublished manuscripts. Only reports in English and papers published post-1990 were considered. The paper detailed pediatric cardiac rehabilitation programs for inpatient, outpatient, and home-based settings, emphasizing a team approach involving physicians, rehabilitation therapists, and other healthcare providers. The recommended staff composition includes dieticians, physical therapists, and occupational therapists, coordinated by a pediatric cardiologist and a pediatric physiatrist. Staff are also advised to be capable of managing medical emergencies, and the staff-to-patient ratio should not exceed 1 to 4 at any point, in line with previous recommendations.

Inpatient Acute Care Rehabilitation

The literature on inpatient acute care rehabilitation is sparse, but two reports were identified that describe rehabilitation programs during acute care hospitalization. One report focused on patients with a ventricular assist device, while the other looked at patients hospitalized for heart failure. Both programs demonstrated the safety and feasibility of acute care rehabilitation, with no adverse events related to physical activity reported. Additionally, one program documented that patients were able to achieve their therapeutic goals. The findings suggest that inpatient acute care rehabilitation is safe and feasible, both in intensive care settings and on standard hospital floors, and can contribute to the achievement of therapeutic goals for patients. It is evident that more research and attention are needed in this area to better understand the benefits and potential impact of inpatient acute care rehabilitation for various patient populations.

Outpatient Rehabilitation

The outpatient rehabilitation section of the research paper identified nine outpatient programs described across fourteen studies. These programs were designed for patients with congenital heart defects (CHDs) and included children as young as 8 years old, young adults, and individuals up to 40 years old, focusing mainly on children and adolescents. The duration of the programs ranged from 2 weeks to 8 months, with structured activity occurring two to three times per week for 30 to 60 minutes per session. All programs integrated warm-up and cool-down periods of 5 to 10 minutes each, as well as aerobic and some strength training components. The studies indicated improvements in maximal oxygen output, exercise duration, metabolic equivalents, and overall quality of life. Additionally, one program reported self-reported enhancements in cognitive functioning and parent-reported improvements in social functioning. These findings highlight the positive impact of exercise rehabilitation programs on patients with CHDs, with consistent improvements in physical and functional outcomes. The diverse range of programs and the comprehensive assessment of their effects provide valuable insights into the potential benefits of outpatient rehabilitation for individuals with CHDs.

Home-Based Rehabilitation

The home-based rehabilitation programs described in the research paper were summarized across nine programs in ten reports. The majority of the studies focused on school-age and adolescent patients with congenital heart diseases (CHDs), but there were also programs targeting toddlers, young adults, and patients following heart transplantation. These programs generally required 8 to 12 weeks of home-based exercise and included initial and follow-up in-person sessions with health providers for education and progress monitoring. Digital tools such as heart rate monitors, accelerometers, and Fitbits were often used to monitor progress. The structure of the programs mirrored outpatient programs, involving sessions of an hour or less with warm-up and cool-down periods of 5 to 10 minutes, and focused on aerobic exercise. Training in these programs was associated with improved exercise capacity, better cardiorespiratory outcomes, and improved quality of life.

Cognitive Rehabilitation

The focus of rehabilitation programs for children with cardiac conditions has primarily been on exercise training due to their complex medical needs. However, a study led by Newburger is currently investigating cognitive rehabilitation in children with CHDs through a computer-based training program aimed at enhancing executive functioning skills. In response to this need, multidisciplinary inpatient and outpatient cardiac rehabilitation programs have been established. These programs encompass medical evaluation, prescribed therapies, nutritional and physical education, along with consultation for developmental, neuropsychological, and psychological services. The team responsible for these programs, led by a pediatric cardiologist and pediatric physiatrist, includes various professionals such as physical therapists, occupational therapists, speech and language pathologists, dieticians, neuropsychologists, and pediatric psychologists. Together, they meet on a regular basis to review patients for clinic care and to advance the development of the cardiac rehabilitation program.

Current Directions at Our Institution

The institution's current focus is on implementing pediatric cardiac rehabilitation for children on the path to heart transplantation, with future plans to extend the program to children with congenital heart defects (CHDs) and cardiomyopathies not requiring transplantation. The program involves a comprehensive pre-transplant evaluation by medical and therapy providers, leading to a cohesive set of recommendations and potential pre-transplantation therapies. Post-transplant, patients undergo a 12-week outpatient physical therapy regimen, including aerobic conditioning, resistance, and strength training, with sessions occurring three times per week and lasting 30-60 minutes. Additional support includes occupational therapy for adaptive skills, speech and language therapy for cognitive restructuring, and education on nutrition and physical activity. These services can be provided at hospital-associated facilities for nearby families, or families elsewhere can receive a prescription for interventions in their community. Psychotherapy and neuropsychological testing are available for psychosocial adjustment and cognitive needs, respectively. The institution adheres to guidelines for assessing children with cardiac disorders when evaluating their return to school and home environments.

Conclusion

The conclusion of this research paper emphasizes the benefits of pediatric cardiac rehabilitation programs for children's physical health and psychosocial well-being, with minimal adverse events. It suggests that both center-based and home-based programs can be effective, with home-based programs potentially reducing the burden of transportation and time off work for parents. However, it is important for home-based programs to be monitored by a cardiologist and a pediatric physiatrist. The conclusion also highlights the need for further research to demonstrate sustained long-term benefits of interventions, understand the impact on the quality of life for the family system, and explore the long-term impact of cognitive interventions within pediatric cardiac rehabilitation programs. Overall, the conclusion supports the efficacy and tolerability of pediatric cardiac rehabilitation programs, advocates for both center-based and home-based approaches, and emphasizes the need for ongoing research to better understand the long-term effects and benefits of these interventions.