Supporting Physical Literacy in Patients with Esophageal Atresia

Abstract

Compared to their peers, children and adolescents with esophageal atresia have reduced physical activity, motor skills and impaired lung function. Respiratory complaints caused by tracheomalacia, bronchial obstruction and chronic inflammation limit physical performance. More rarely, failure to thrive, gastroesophageal reflux and swallowing disorders can also cause problems during prolonged exertion. In addition, parental anxiety and overprotectiveness may have a negative impact on physical activity behaviour. Targeted promotion of physical literacy – motivation, self-confidence, ability and knowledge – can help to ensure physical activity in the long term. In addition to the targeted treatment of exercise-related symptoms, medical care should include the teaching of suitable everyday strategies and the promotion of motivation to actively participate in sport.

Keywords

oesophageal atresia/esophageal atresia - congenital malformation - physical activity - fitness - exercise promotion - motor activity - esophageal atresia

Physical Activity and Promoting Exercise

The first 1,000 days of life–from conception to the end of the second year of life–are crucial for shaping health factors such as nutrition and exercise habits [1]. Deficiencies during this critical developmental period are often discussed in the context of global inequality [1], but in children with chronic conditions such as esophageal atresia, who spend a large part of their first two years of life undergoing medical treatment [2], general health promotion is neglected in the context of constant need for specific therapy. Yet it is precisely in children who already live with health limitations that it is crucial to promote healthy behaviours as much as possible. Family activities play an outstanding role in early childhood development and the establishment of an active lifestyle [1], [3], and physically active children and adolescents become active adults [4]. This makes promoting physical activity at all ages a family project. Furthermore, the foundations for lifelong mobility into old age are laid in childhood and adolescence. Physical activity in youth greatly influences long-term muscle [5] and bone mass [6] as well as lung function [7] in older ages. Itʼs a paediatricianʼs job to plan far ahead for our patientʼs long-term outcome of many years to come. Publicly accessible and free-of-charge information material of promoting physical activity, such as the new “prescription for exercise” for children and adolescents and detailed target group-specific information materials, are provided by the German Sports Youth of the German Olympic Sports Confederation (www.dsj.de) or the Federal Institute for Public Health (shop.bioeg.de).

Children and adolescents with “special medical care needs,” the term used in epidemiological research to refer to all chronic diseases, are among the recognized risk groups for reduced physical activity [8]. In 2020, the World Health Organization (WHO) published new recommendations for physical activity that, for the first time, explicitly included children and adolescents with chronic diseases [9]. According to these recommendations, children and adolescents aged six years and older should exercise for an average of 60 minutes a day, so that they sweat at least a little and are out of breath (moderate-to-vigorous physical activity). Three times a week, the activities should also include strength training [9]. The Federal Centre for Health Education (BZgA) in Germany recommends 90 minutes of exercise per day for children and adolescents, including low-intensity everyday activities such as walking [10]. For toddlers, the WHO and the BZgA even recommend 180 minutes of daily exercise [3], [10]. Both institutions emphasize limiting screen time as the key to promoting physical activity.

The positive effects of physical activity on many chronic physical and mental illnesses in children and adolescents are now well documented [11]. However, children with chronic diseases, such as congenital heart disease are exempt from physical education more often than medically strictly necessary [12]. For esophageal atresia patients, there are no specific intervention studies that prove an improvement in health through physical activity to date, but there are reports on positive experiences from clinical practice and patient organizations. At the very least, generally accepted assumptions about the positive effects of exercise and sports on health apply [11].

Since physical activity depends on more than just physical fitness, the holistic concept of “physical literacy” was introduced in 2001, which describes essential pillars for an active lifestyle in addition to pure physical competence: motivation, confidence, and knowledge and understanding [13] ([Fig. 1]). Concepts for improving physical literacy are usually applied systemically, for example in schools. In the case of rare diseases, however, disease-specific support, especially the transfer of knowledge, is crucial. In addition to medical staff, patient organizations also play a key role here.

Fig. 1 Condition-specific promotion of physical literacy in children and adolescents born with esophageal atresia.

Physical Activity and Fitness

Children and adolescents with esophageal atresia generally participate in school and club sports to a normal extent, but they still spend significantly less time being physically active each week than their healthy peers [14]. While there is no relevant difference in physical activity at primary school age, the average difference increases with age, especially in girls [14]. In children and adolescents, impaired motor skills have also been demonstrated in small cohorts [15], [16], [17]. However, there are very large individual differences in physical activity [14] and performance [16], [18], which is influenced by factors related to esophageal atresia and general environmental factors, such as socioeconomic status. With regards towards physical activity, different surgical strategies, such as minimally-invasive versus open repair or additional fundoplication had no influence [14]. Symptoms during exertion and lower body weight, however, were associated with reduced physical activity [14]. Further studies with larger samples are needed to identify key factors for physical activity and fitness in these patients.

In addition to physical factors, the mindset of esophageal atresia patients and their families is crucial. In many cases, mental health and self-care of parents of chronically ill children are also significantly reduced [19]. In the context of esophageal atresia, not only physical activity of affected children and adolescents, but also of their parents was significantly impaired [20]. More than two-thirds of parents of children with esophageal atresia complained of psychological problems such as increased anxiety and depressive symptoms [21], which can be transferred to the children or lead to an overprotective and highly controlling parenting style with avoidance [19]. Avoidant behaviour, both on the part of parents and the affected subjects, is a maladaptive disengaging coping strategy that should not be legitimized by medical prohibitions whenever possible [19]. Membership of a sports club by family members, on the other hand, was associated with increased physical activity among patients. In clinical practice, avoiding behaviour with regards towards physical activity should be recognized and addressed [14].

Possible Symptoms During Physical Exertion

Esophageal atresia is a combined malformation of the esophagus and respiratory tract that can be associated with a variety of respiratory complications in addition to gastrointestinal complaints [22]. Schoolchildren showed significantly reduced cardiopulmonary function, which was attributed to recurrent pulmonary infections and reduced physical activity [23]. In addition, both increased obstructive and restrictive ventilation disorders were detected. These were accompanied by a reduction in total lung capacity, which in turn is associated with reduced cardiopulmonary performance [23]. However, physical activity generally led to a catch-up in lung function parameters between the ages of four and ten in children with other lung disease during infancy [24]. In esophageal atresia patients, symptoms during exercise occurred in about a quarter of patients [14]: respiratory complications associated with tracheomalacia and bronchial obstruction are the most common limiting factors for physical activity in affected individuals [14]. Impaired secretion clearance in the context of tracheomalacia can also play a role during exercise [22]. In order to improve participation and enjoyment in sports, symptom control and avoidance of additional pulmonary stressors in a hyperreactive bronchial system are therefore crucial, which in turn has a positive effect on lung function through training.

Underweight is common in esophageal atresia patients, especially in early childhood, and is often associated with a complicated course, persistent nutritional difficulties, and growth disorders [25]. A reduction in fatty and fat-free body mass is associated not only with reduced strength [16], but also with a lower capacity to store substrates of both aerobic and anaerobic energy metabolism. In rare cases, the daily calorie intake of patients with esophageal atresia exceeds their basal metabolic rate [26]. However, energy expenditure during moderate physical activity as recommended daily by the WHO is defined as three-fold basal metabolic rate [8]. Parents also described slim physique and, in some cases, short stature, as well as a “lack of energy” as limiting factors in sports [14]. A lower body weight and height was associated with a reduced amount of moderate-to-vigorous physical activity [14]. In esophageal atresia, prolonged exertion with short meal breaks is particularly problematic, as patients need more time to eat and a longer digestive break between meals and renewed exertion. In these cases, individual solutions must be found. In general, foods that are low in fat, acid, and fiber and not very spicy are recommended to control reflux symptoms [27], [28]. For those affected by dysphagia, in addition to lightly sweetened non-carbonated beverages, a regimen including mushy carbohydrate-containing foods such as fruit puree or glucose gels should be tested. In general, nutritional and swallowing problems, as well as gastroesophageal reflux, which dominate the everyday lives of many families [29], have subjectively no major impact on physical activity according to patients [14]. One possible explanation is that many patients have already found effective individual strategies for timing and composition of food before planned exertion.

Esophageal atresia is associated with other congenital malformations and syndromes. A combination of several associated malformations is another significant negative factor influencing physical activity and is also the main reason for exemption from school sports [14]. The combinations of malformations are highly individual and require appropriate solutions for affected patients and their families. Special exercise programs for children and adolescents with congenital malformations without mental disabilities have not been successfully established in Germany, so that, whenever possible, integration into regular organized sports is warranted. Contrary to expectations, no statistical correlation with inactivity could be demonstrated for associated congenital heart disease in the context of esophageal atresia [14]. A specific analysis of children with isolated esophageal atresia compared to isolated congenital heart defects showed a comparable reduction in physical activity compared to healthy peers [30]. It was particularly noticeable that the active time of both patient groups decreased significantly with increasing age [30]. Adolescence is a vulnerable phase in which young people develop their own physical self-concept and become more aware of their chronic illness and physical differences [31]. Even in the normal population, there is a regular decrease in physical activity during this phase [31], but this was significantly more pronounced in adolescents with congenital heart defects and esophageal atresia [30]. Physical activity should therefore be a particular focus of follow-up care in this vulnerable group.

Conclusion

Just as unfavourable environmental factors can negatively influence child health, the health of children and adolescents with chronic diseases can be optimized through targeted support and avoidance of dysfunctional compensation mechanisms. Currently, follow-up care for esophageal atresia focuses primarily on physical, especially surgical, aspects. However, other pillars of physical literacy should also be addressed in a disease-specific manner as part of promoting physical activity. The outcome, physical activity, and physical performance vary greatly among individuals with esophageal atresia. Whenever possible, integration into organized sports should be pursued. In cases of more severe physical limitations, a suitable program must be found that initially promotes the childʼs strengths rather than their deficits in order to boost motivation and self-confidence. Fun and positive experiences also increase the likelihood that patients will remain active in the long term [9]. For patients with esophageal atresia, for example, sports can be chosen in which lower body weight is irrelevant or even advantageous, sports in weight classes or with a lesser focus on endurance. In order to enable a carefree time during sports, optimal management of respiratory complaints and a robust nutritional concept for prolonged exertion are essential. Effective symptom control can in turn boost lung function parameters through improved fitness. In addition, patient education on how to deal with possible physical limitations during exercise is crucial, for patients to take responsibility for their own bodies. Further studies are needed to identify relevant factors influencing cardiopulmonary fitness and motor skills in esophageal atresia.

Graham Slater ([Fig. 2]), chair of EAT (2011–2021), the global association of patient organisations for esophageal atresia, has been physically active throughout his life: “Running was for me a good way to maintain my overall fitness, maintain good mobility and provide opportunities to be outside in fresh air. It was also important in improving my lung function and this exercise helped combat the respiratory difficulties I experienced as a TOF/OA survivor.”

Fig. 2 Graham Slater, one of the oldest survivors with corrected esophageal atresia.

Conflict of Interest

The authors declare that they have no conflict of interest.

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Publication History

Article published online:
10 October 2025