# Feasibility and acceptability of a new adapted physical activity program for children with chronic disease: a pilot study

Martin Landois, Quentin Hauet, Marie-Laure Couec, Sylvie Lacroix, Vanessa

Menut, Anne Chauvire Drouard, Christèle Gras-Le Guen, Thibault

Deschamps

► To cite this version:

Martin Landois, Quentin Hauet, Marie-Laure Couec, Sylvie Lacroix, Vanessa Menut, et al. Feasibility and acceptability of a new adapted physical activity program for children with chronic disease: a pilot study. Archives de Pédiatrie, In press, Online ahead of print. 10.1016/j.arcped.2025.12.001. hal-05436492

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Research paper

# Feasibility and acceptability of a new adapted physical activity program for children with chronic disease: a pilot study

Martin Landois<sup>a,b</sup>, Quentin Hauet<sup>c</sup>, Marie-Laure Couec<sup>d</sup>, Sylvie Lacroix<sup>e</sup>, Vanessa Menut<sup>f</sup>, Anne Chauvire Drouard<sup>a,b</sup>, Christèle Gras-Le Guen<sup>a,f</sup>, Thibault Deschamps<sup>b,g,* ID</sup>

## ARTICLE INFO

### Keywords:

- Quality of live

- Physical health

- Congenital cardiopathy

- Sickle cell disease

- Obesity

## ABSTRACT

**Background:** Increasing physical activity and reducing sedentary time in children and adolescents with chronic illness is a critical challenge. Despite several studies supporting the benefits of exercise programmes for improving physical and psychological health, such programmes remain relatively uncommon in the care of children and adolescents with chronic disease.

**Objectives:** To evaluate the feasibility and acceptability of integrating an Adapted Physical Activity (APA) programme into routine paediatric outpatient care, aiming to bridge the gap between strong scientific findings and everyday clinical practice of paediatricians.

**Methods and setting:** Adolescents with congenital heart disease, obesity, or sickle cell anemia voluntarily participated in a supervised 2-month APA program in the pediatric department of Nantes University Hospital. Feasibility and acceptability were assessed using study-specific questionnaires. The efficacy and benefits of the APA program were evaluated with performance measures including changes in aerobic fitness through VO2 measurements, muscle mass and fat mass, the five-times sit-to-stand test and six-minute walk test, and pediatric quality of life scores. **Results.** Among the 17 included adolescents (11–17 years old), 13 (76 %) completed the 2-month APA program. The mean attendance was 79.4 % (18/24 sessions); 91 % enjoyed this activity; and 83 % of parents reported that this program was helpful for their adolescent. Following the intervention, patients experienced no adverse effects, reported a 7 % improvement in quality of life (p = 0.02), and demonstrated enhanced functional motor activities, including increased aerobic exercise capacity and functional performance on the six-minute walking test (+15.3 %; p < 0.01).

**Conclusion:** These preliminary findings suggest that APA interventions are highly implementable in children with chronic diseases. We report a significant benefit on the quality of life and physical performance. Larger APA programs implementation is needed to confirm, with a high level of evidence, the importance of integration of APA programmes into routine paediatric care.

## 1. Introduction

For a long time, the old medical dogma associated illness and compulsory rest or contraindication to physical activity (PA) and sport. Yet the benefits of exercise and PA no longer need to be demonstrated, even in children and adolescents with chronic diseases, such as

congenital heart disease [1], obesity [2], and sickle cell anemia [3]. To that extent, increasing PA levels and reducing sedentary time in adolescents with chronic illnesses is all the more important as this age group is more likely than some others to be insufficiently active (i.e., to meet PA guidelines of at least 60 minutes of moderate-to-vigorous PA daily) and to have a highly sedentary lifestyle [e.g. 4,5].

<footnote><sup>a</sup> CIC 1413, Epidémiologie clinique INSERM 1043-CHU Hôpital Mère Enfant, CHU Nantes F-44000 Nantes, France</footnote>

<footnote><sup>b</sup> UFR Sciences et Techniques des Activités Physiques et Sportives, Nantes Université, France</footnote>

<footnote><sup>c</sup> Service de cardiologie pédiatrique médico chirurgicale, Hôpital Mère Enfant CHU NANTES, France</footnote>

<footnote><sup>d</sup> Service d'onco-hématologie, Hôpital Mère Enfant CHU NANTES, France</footnote>

<footnote><sup>e</sup> Hôpital de jour des adolescents, Hôpital Mère Enfant CHU NANTES, France</footnote>

<footnote><sup>f</sup> Service de pédiatrie générale, Hôpital Mère Enfant CHU NANTES, France</footnote>

<footnote><sup>g</sup> Nantes Université, CHU Nantes, Motricité - Interactions - Performance, MIP, UR 4334, F-44000 Nantes, France</footnote>

<footnote>* Corresponding author at: Laboratoire « Motricité, Interactions, Performance » (UR 4334), Nantes, France.
E-mail address: thibault.deschamps@univ-nantes.fr (T. Deschamps).</footnote>
Increasing physical activity in children with chronic disease is supported by various interventions like videoconference-delivered PA lifestyle programmes [6] known as ‘Adapted PA programmes’ (APA). While there is plenty of evidence to support APA programmes for improving patients’ general health and quality of life [7], they are still relatively rare in patient care for various reasons (e.g., ‘practical limitations’ and ‘time constraints and priorities’ identified by clinicians as key barriers [8]). Hence, implementing an APA programme in the routine care of paediatric outpatients may reduce the gap between robust scientific findings and the daily clinical practice of paediatricians.

Implementation science has received growing attention in healthcare as it can verify the conditions under which an evidence-based intervention can be put into action and, in the long term, how it can be disseminated to several practice settings [9]. Before developing an APA programme on a large scale for hospital paediatric departments, assessing its ease of implementation requires it is feasible and well accepted by young patients and parents (e.g. patients’ positive/negative perceptions of the APA intervention).

Another challenge is how to propose the same structure of APA intervention (type (mode) of exercise, duration of time, intensity, frequency, volume, and progressivity) for different targeted paediatric populations. In short, for children with congenital heart disease, to ensure an improvement in the patient’s functional capacities (e.g. better quality of life), the scientific literature recommends a minimum of 40- to 60-minute sessions [10], 2 to 3 times per week as programmes lasting from 8 to 15 weeks. Including both aerobic and resistance exercise training sessions is also recommended [1]. For obese children, a recent meta-analysis [2], involving a total of 555 obese children aged 6 to 18 years, evaluated intervention programmes lasting between 10 and 48 weeks. In addition, programmes combining aerobic and resistance exercise were more effective than those with aerobic exercise alone in improving body composition (by decreasing fat mass and increasing lean mass). Finally, there remain too few studies examining the effects of exercise in patients with sickle cell disease [3]. To our knowledge, only four cross-sectional studies and two clinical trials have been conducted. These investigated a 12-week programme of aerobic exercise on a treadmill, lasting approximately 30 min at submaximal intensity (60–70 % of maximum heart rate), 3 times per week [11]. Notably, exercise improves exercise tolerance, inflammatory markers, and the immune system in patients with sickle cell disease.

Therefore, we aimed at (a) addressing the feasibility and acceptability of a supervised 2-month APA programme (prescribed for the first time in the paediatric department of Nantes University Hospital) for high school-aged children and adolescents with congenital heart disease, obesity or sickle cell anaemia, and (b) testing preliminary efficacy estimates, using a pilot quasi-experimental, pre-post intervention, single-arm study.

# 2. Material and methods

## 2.1. Study participants

To conduct this open single-centre study of feasibility, acceptability, and preliminary efficacy of an APA programme among children and adolescents with chronic diseases, we first obtained ethical clearance from the local committee of Health Research Ethics [Groupe Nantais d'Ethique de Santé] of Nantes University Hospital. The parents of each participating patient signed a written informed consent form before participating in the study. This naturalistic clinical investigation, based on a medical prescription of an APA programme, was integrated into the young patients' routine care.

General inclusion criteria were age 11–18 years and a medical prescription for APA. Exclusion criteria included patient or parent refusal to participate, missing exercise stress test data, or non-affiliation with the French social security system. Pathology-specific inclusion criteria were as follows: for patients with congenital heart disease, a history of cardiac

surgery; for obese patients, either complex moderate obesity (i.e. obesity associated with chronic diseases or obesity complications) or severe obesity (BMI > 35 kg/m²); for patients with sickle cell disease, a diagnosis of major sickle cell syndrome.

## 2.2. Performance measures and assessments

The main performance measures used to evaluate the benefits of the APA programme were expected change in aerobic fitness through VO₂ measurements (VO₂max and VO₂ at ventilatory threshold) measured by a cardiopulmonary exercise test, change in body composition (muscle mass and fat mass) measured by bioelectrical impedance spectroscopy (using Bodystat®1500; Bodystat Firm Inc., Tampa, Florida, USA), and quality of life assessed using the 23-item paediatric quality of life inventory, PedsQL 4.0; [12].

### 2.2.1. Paediatric cardiopulmonary exercise test (VO₂max)

Cardiopulmonary fitness was assessed by a cardiopulmonary exercise test (CPET), using the same method as in our previous paediatric CPET studies (e.g., see [13] for details). In summary, an incremental overall duration was planned between 8 to 12 min: a 1-minute rest; a 3-minute warm-up (10 to 20 watts), with increments of 10, 15, or 20 watts each minute; a pedalling rate of 60 to 80 revolutions per minute; a 3-minute active recovery (20 watts); and a 2-minute rest. The CPET was considered as maximal when two out of the four following criteria were reached: respiratory exchange ratio (RER = VCO₂/VO₂) ≥ 1.0 maximum heart rate >85 % of maximal age-predicted heart rate, limit of the patient's tolerance despite verbal encouragement, plateau of VO₂ (VO₂max) despite increasing exercise intensity, and patient inability to sustain a minimum pedalling frequency of 60 per minute despite verbal encouragement. When the VO₂max did not reach the criteria for maximal effort, the VO₂ peak was recorded, as usual in paediatrics.

To provide additional insight into the effect of the 2-month APA program on the level of aerobic fitness (VO₂max), we normalized the peak VO₂ values as a function of predicted height-based VO₂max, using Cooper's equations [14]. Hence, the number of children with impaired aerobic physical activity (VO₂max < 80 % of predicted values) and physical deconditioning (Ventilatory Threshold 1 [VT1] < 55 % of predicted VO₂max values) were also calculated [15,16].

### 2.2.2. Physical performance measures

The young patients were asked to perform the five-times sit-to-stand test (FTSS), where they were instructed to stand up from a chair five times as quickly as possible with their arms folded across their chests. This test is used to assess functional lower extremity strength in a variety of populations, including paediatric patients [17].

To examine the pre vs post change in aerobic exercise capacity and functional performance, the six-minute walk test (6MWT), which quantifies the distance an individual is able to walk in a total of 6 minutes on a flat surface, was performed. The 6MWT is widely used in obese young patients [18] and in patients with sickle cell disease [19].

### 2.2.3. Other secondary measures

**Quality of life** (PedsQL 4.0) [12]. This child self-reporting questionnaire includes 23 questions focusing on four domains (total score/100): physical health (8 items), emotional (5 items), social (5 items), and school (5 items) functioning. It also includes a parent proxy-report assessing the child's health-related quality of life. Measuring perceived health from the perspective of both children and their parents, it evaluates the impact of paediatric chronic diseases on quality of life for more effective targeted health interventions [12].

**Children and adolescents physical activity and sedentary questionnaire (CAPAS-Q)** [20]. Validated for assessing physical activity and sedentary behaviours in children aged 8 to 18, this self-administered questionnaire (31 items) provides a qualitative evaluation of movement-related behaviours and their characteristics (e.g.,
duration and intensity of physical activity and sedentary behaviours, activities, and mobility transportation [e.g., bicycles, walking...]). It helps clinical practitioners with appropriate interventions to improve movement behaviours in the young.

**Paediatric functional assessment of chronic illness therapy-fa-tigue** (Peds Facit-F) [21]. This 13-question survey assesses the impact of fatigue related to chronic disease treatments in children and adolescents between the ages of 8 and 18 years. Responses are rated on a Likert scale, with five response options ('never' – score = 0 to 'always' – score = 4), yielding an overall score (/52) where a higher score indicates less fatigue.

### 2.2.4. Feasibility and acceptability measures

Strongly based on a similar study [6], feasibility and acceptability were assessed via a study-specific questionnaire, administered post-intervention. This asked participants and parents to rate the intervention based on multiple aspects using a five-point Likert scale. Aspects included participants' enjoyment of the intervention, the pertinence of the information learned, and the ease with which they were able to participate in all aspects of the intervention. Scores were anchored such that 1 = 'Not at all', 3 = 'Somewhat', and 5 = 'Very' when rating the enjoyability, ease of participation, understandability, and applicability of the intervention. For these items, scores of '4' and '5' were considered 'favourable' responses.

### 2.2.5. Specific contents of the personalized APA programme

Given the solid scientific evidence supporting the benefits of exercise and APA programmes for paediatric populations with chronic diseases, the intervention continued over a period of 12 weeks, with twice-weekly sessions, addressing the imperatives of the patients and their parents as much as possible. Supervised by a certified APA professional, the 45-minute sessions hosted a maximum of four adolescents to ensure gradual and, more importantly, personalized dimensions, while achieving better group dynamics. However, due to practical constraints, availability, and schooling, it should be noted that the groups were composed of children and adolescents with different pathologies. This mixing was seen as an opportunity for these young patients to socialize with peers of the same age and to be confronted with different challenges. In this respect, the APA professional instructor ensured designing the sessions to meet the individual features/capacities of each patient, thereby fostering engagement and progressivity during activities. Note that when an APA session could not be scheduled at the hospital, a videoconference-PA session could be proposed and provided. Likewise, a session could be rescheduled in case of absence, either at the hospital or via videoconference. The general structure of a typical APA session is detailed in Supplementary Material #SM1.

## 2.3. Data analysis and statistics

All statistical analyses were performed on the 13 patients who fully completed the 24-session APA programme. Paired sample mean comparisons, by using the non-parametric Wilcoxon tests, were conducted

for all the aforementioned dependent variables. All statistical analyses were performed using the open-source software JASP (version 0.18.3.0) at https://jasp-stats.org/. The p-value < .05 was considered statistically significant.

## 3. Results

Seventeen children and adolescents voluntarily participated in this pilot feasibility/acceptability study, including four patients with congenital heart disease (median age [Q1; Q3]: 15.5 years [13.75; 17]; Body Mass Index [BMI] = 24 kg/m² [21.2; 33]), five with obesity (median age: 13 years [13,14]; BMI = 37.9 kg/m² [34.4; 39.7]), and eight with sickle cell disease (median age: 14 years [12.5; 16] years; BMI = 16.9 kg/m² [16.1; 22.9]). It is worth noting that only thirteen patients completed the 2-month APA programme, which comprised 24 sessions (two 45-minute sessions per week), while four others withdrew early for various reasons: one due to hospitalization, two due to lack of motivation after the first session, and one due to geographical relocation (moving house).

Medians [quartiles 1-3 or min-max] are presented in Table 1 (baseline characteristics of 13 patients before the APA intervention) and Table 3 (pre vs. post-intervention median measures, with % change). Responses to the feasibility and acceptability questionnaires are summarized in Table 2, with responses considered favourable when a score of '4' or '5' was given (on the five-point Likert scale).

### 3.1. Feasibility and acceptability

Table 2 shows the median ratings from the self-reported results on the feasibility and acceptability of the prescribed APA programme to the young patients and their parents. Most of the patients rated the intervention as pleasant (91 %) and very interesting (83 %). Furthermore, 83 % of their parents rated the APA programme favourably, responding that it was helpful for their adolescent (83 %) and that they would recommend it to other parents (100 %).

### 3.2. Preliminary efficacy of the APA programme (pre vs post intervention analysis)

Comparisons were performed by examining all pre vs post performance measures collected for each patient within 7 to 14 days of the end of the 12-week APA intervention. Overall, mean attendance at supervised APA sessions (therapeutic compliance) was 79.4 % (≈ 18 out of 24 sessions) with a minimum attendance rate of 58.3 % and a maximum of 95.8 %. Regarding intervention safety, no adverse events were documented during this pilot implementation study.

The main preliminary findings are significant improvement (pre vs. post intervention) in the FTSS test (p = 0.007; +43 %), 6MWT (p = 0.009; +15 %), and the child's self-reported quality of life (p = 0.02; +7 %). All the statistical results are summarized in Table 3.

<table><caption>**Table 1**
Median baseline characteristics [Q1; Q3] of patients before the APA intervention (N = 13).</caption><thead><tr><th></th><th>Total N = 13<br>[Q1; Q3]</th><th>Cardio N = 2<br>[min; max]</th><th>Sickle Cell Disease N = 6<br>[min; max]</th><th>Obesity N = 5<br>[min; max]</th></tr></thead><tbody><tr><td>Age (years)</td><td>14 [13; 16]</td><td>15 [13; 17]</td><td>14 [11; 18]</td><td>13.5 [11; 15]</td></tr><tr><td>Sex (%)</td><td></td><td></td><td></td><td></td></tr><tr><td>Male</td><td>46.2</td><td>0</td><td>33.3</td><td>80</td></tr><tr><td>Female</td><td>58.89</td><td>100</td><td>66.67</td><td>20</td></tr><tr><td>Height (z-score)</td><td>-0.58 [-1.04; 0.83]</td><td>-0.97 [-1.04; -0.9]</td><td>-0.52 [-3.72; 2.13]</td><td>0.21 [-0.62; 2.18]</td></tr><tr><td>Weight (z-score)</td><td>1.43 [-0.93; 2.68]</td><td>4.04 [0.91; 7.18]</td><td>-1.2 [-1.94; 1.43]</td><td>4.17 [1.45; 5.06]</td></tr><tr><td>Body Mass Index (z-score)</td><td>1.82 [-0.89; 3.88]</td><td>5.53 [1.82; 9.23]</td><td>-0.99 [-1.29; 1.06]</td><td>4.15 [3.11; 5.26]</td></tr><tr><td>Fat mass (kg)</td><td>20.9 [15.3; 42.8]</td><td>42.4 [16.6; 68.3]</td><td>11 [6.8; 22.9]</td><td>33.1 [21; 49]</td></tr><tr><td>Lean mass (kg)</td><td>51.6 [43.8; 58.1]</td><td>51.7 [46.7; 56.7]</td><td>31.5 [18.9; 51.7]</td><td>69.3 [51.4; 85.3]</td></tr></tbody></table>

Note: Q: Quartile; APA: Adapted Physical Activity
<caption>**Table 2**</caption>

Self-reported feasibility and acceptability ratings of APA and exercise program, using a five-point Likert scale, with 1: "Not at all" and 5: "Very".

<table><thead><tr><th></th><th>Median [Q1;Q3] or % (n)</th><th># Participants with favorable responses<sup>a</sup></th></tr></thead><tbody><tr><td><strong>Adolescents</strong></td><td></td><td></td></tr><tr><td>Participating in these physical activity and exercise sessions was...</td><td></td><td></td></tr><tr><td>Enjoyable</td><td>4 [4; 4]</td><td>11 (91.6 %)</td></tr><tr><td>Easy</td><td>3 [2; 3]</td><td>2 (16.6 %)</td></tr><tr><td>What I learned during the sessions was...</td><td></td><td></td></tr><tr><td>Generally interesting</td><td>4 [4; 4.25]</td><td>10 (83.3 %)</td></tr><tr><td>Easy to understand</td><td>4.5 [4; 5]</td><td>10 (83.3 %)</td></tr><tr><td>Useful for me</td><td>5 [4; 5]</td><td>10 (83.3 %)</td></tr><tr><td>Helped me become more physically active</td><td>5 [4; 5]</td><td>11 (91.6 %)</td></tr><tr><td>I would describe the number of sessions as...</td><td></td><td></td></tr><tr><td>Too few</td><td>25 % (3)</td><td></td></tr><tr><td>About right</td><td>50 % (6)</td><td></td></tr><tr><td>Too many</td><td>25 % (3)</td><td></td></tr><tr><td>I would describe the length of the sessions as...</td><td></td><td></td></tr><tr><td>Not long enough</td><td>33.3 % (4)</td><td></td></tr><tr><td>About right</td><td>66.7 % (8)</td><td></td></tr><tr><td>Too long</td><td>/</td><td></td></tr><tr><td><strong>Parents</strong></td><td></td><td></td></tr><tr><td>Did your child enjoy the adapted physical activity sessions?</td><td>4 [4; 5]</td><td>11 (91.6 %)</td></tr><tr><td>Have you noticed any improvements in your child's overall well-being since they started?</td><td>3.5 [3; 4]</td><td>6 (50 %)</td></tr><tr><td>Have you observed any physical or motor progress in your child since they began attending the sessions?</td><td>3 [3; 4]</td><td>4 (33.3 %)</td></tr><tr><td>Does your child feel more confident in their ability to participate in physical activities?</td><td>3 [2.75; 4.25]</td><td>5 (41.6 %)</td></tr><tr><td>Have the adapted physical activity sessions had a positive impact on your child's motivation?</td><td>4 [4; 4.25]</td><td>10 (83.3 %)</td></tr><tr><td>Did you find it easy to organize having two sessions per week for your child?</td><td>3.5 [1.75; 4]</td><td>6 (50 %)</td></tr><tr><td>Would you recommend these sessions to other parents whose children might benefit from them?</td><td>5 [4; 5]</td><td>12 (100 %)</td></tr></tbody></table>

## 4. Discussion

This pilot study confirms that a 2-month APA programme is feasible, well-tolerated, and very appreciated. Moreover, it is free of adverse effects in children and adolescents (11–17 years) with various chronic diseases. In addition, following the intervention, patients showed positive changes in self-reported quality of life and demonstrated improved functional motor activities, such as increased aerobic exercise capacity and functional performance. These preliminary findings suggest that implementing APA interventions is both feasible and appropriate in a paediatric department setting.

The results regarding the feasibility and acceptability of in-hospital APA programmes are very encouraging. Indeed, the variety of 45–60-minute sessions within the 12-week programme was appreciated as interesting, enjoyable, and beneficial, both by the children and adolescents themselves and by their parents. Consistent with the limited existing evidence on the feasibility of exercise programmes for children with chronic conditions [22,23], these findings are supported by high adherence: 81 % completed the twice-weekly programme within 12 weeks, attending an average of 80 % of the sessions. This is a crucial issue when determining the conditions for successful deployment of APA programmes in paediatric settings. Many children and adolescents with chronic disease have a particular relation to the healthcare environment, sometimes synonymous with pain, anger, and tiredness [24]. Yet asking children and parents to come (again and again) to the paediatric department is not a major obstacle to physical activity. Better still, many young participants expressed their disappointment after the supervised programme; most would have liked to continue.

There may be several reasons for the excellent feasibility and acceptability. First, participating in a 12-week intervention was doable for most children and adolescents with chronic diseases, even though they had to come more than twice a week to the clinical setting. Longer outpatient trials often face reduced adherence due to early drop-outs, as young patients or their caregivers may perceive extended intervention trials as burdensome [25]. Second, the variety and appeal of the APA training modalities, along with their group-based format, likely contributed to engagement, despite the constraints of the hospital setting and limited facilities within the University Hospital. In addition

to their high engagement during the APA program, the children and adolescents showed great interest and a real pleasure in the physical activities; 91 % declared that participation in these APA sessions was always very pleasant (this positive affective experience related to exercise and APA was also well perceived by their parents [91.6 %]) and helped them become more physically active (91.6 % of positive responses). Third, a major finding is that a personalised APA program, safe and easy to implement in clinical settings, appears to be a crucial strategy for success, especially for collective sessions for children and adolescents with chronic diseases. By tailoring the progression in terms of exercise intensity and/or volume to adolescents, the current feasibility and implementation study highlights the importance and relevance of personalised interventions in everyday clinical practice. This certainly goes some way to explaining the significant improvement in (physical) performance measures in the small cohort of young paediatric patients studied.

Regarding the expected beneficial therapeutic effects of the APA programme on functional abilities, assessed through performance in the five-times sit-to-stand test (FTSS) and six-minute walk test (6MWT), the pilot results with a small sample of patients (N = 13) are quite encouraging. In fact, a significant difference in FTSS performance was found between pre- (13.9 ± 2.4 seconds) and post- (7.9 ± 1.2 seconds) intervention results. This indicates a significant reduction in time (-43 %), a sign of real improvement in the function of the skeletal muscles of the lower limbs [26]. As FTSS performance reflects knee extension strength capacity [27], these positive results therefore suggest a gain in strength in the lower limbs, explained by the numerous muscle-strengthening exercises carried out during the 12-week APA programme. It is noteworthy that in children and adolescents, higher levels of muscle strength are strongly associated with better insulin resistance and a lower risk of cardiovascular disorders, especially in overweight and obese patients [28]. Positive pre-post improvements were also found in the 6MWT (456.36 ± 73.9 vs 523.36 ± 79.9 m) and in heart rate at the end of that test (126.09 ± 21.9 vs 139 ± 20.8 bpm), showing greater engagement, capacity and tolerance of (more) exercise, a greater functional autonomy to walk, and 'a marker of the effectiveness of reconditioning' in young patients [29].

Interestingly, the current feasibility and acceptability study also

<footnote><sup>a</sup> Scores of "4" or "5" on the five-point Likert scale were considered "favorable" responses.</footnote>

<footnote>Note. Q: Quartile; APA: Adapted Physical Activity</footnote>
<table><caption>**Table 3**
Pre vs. Post-Intervention Results of Patients (median; % change from baseline values) (N = 13*).</caption><thead><tr><th rowspan="2"></th><th colspan="2">Total (N = 13)</th><th colspan="2">Congenital heart disease (N = 2)</th><th colspan="2">Sickle Cell Disease (N = 6)</th><th colspan="2">Obesity (N = 5)</th></tr><tr><th>Pre</th><th>Post</th><th>Pre</th><th>Post</th><th>Pre</th><th>Post</th><th>Pre</th><th>Post</th></tr></thead><tbody><tr><td>Height (z-score) *</td><td>-0.58<br>(-35.4 %)</td><td>-0.37<br>(-9.74 %)</td><td>-0.97<br>(-16.6 %)</td><td>-0.81<br>(-0.6 %)</td><td>-0.52<br>(-11.9 %)</td><td>-0.45<br>(-15.9 %)</td><td>0.21<br>(+0 %)</td><td>0.21<br>(+4.2 %)</td></tr><tr><td>Weight (z-score) *</td><td>1.83<br>(-0.32 %)</td><td>1.65<br>(+1 %)</td><td>4.04<br>(+5.2 %)</td><td>4.07<br>(+0.5 %)</td><td>-1.2<br>(-10.6 %)</td><td>-1.01<br>(-2.73 %)</td><td>3.52<br>(+2.8 %)</td><td>3.67<br>(+6.3 %)</td></tr><tr><td>BMI (z-score)</td><td>2.27<br>(+3.2 %)</td><td>2.34<br>(+1 %)</td><td>5.54<br>(-3.04 %)</td><td>5.37<br>(+0.2 %)</td><td>-1<br>(-2.41 %)</td><td>-0.89<br>(+5.1 %)</td><td>4.15<br>(+3.1 %)</td><td>4.27<br>(+6.4 %)</td></tr><tr><td>Fat mass (kg)</td><td>20.9<br>(+2.62.1 %)</td><td>19.6<br>(+2.62.1 %)</td><td>42.4<br>(+3.3 %)</td><td>44.6<br>(+3.3 %)</td><td>11<br>(+5.1 %)</td><td>10.7<br>(+2.73 %)</td><td>33.1<br>(+3.1 %)</td><td>32.2<br>(+3.1 %)</td></tr><tr><td>Lean mass (kg)</td><td>51.6<br>(+2.62.1 %)</td><td>48.8<br>(+2.62.1 %)</td><td>51.7<br>(+3.3 %)</td><td>50<br>(+3.3 %)</td><td>31.5<br>(+5.1 %)</td><td>24.1<br>(+2.73 %)</td><td>69.3<br>(+3.1 %)</td><td>64.8<br>(+3.1 %)</td></tr><tr><td>VO2<br>Peak VO2max (ml/kg/min)</td><td>22.6<br>(+8.8 %)</td><td>24.6<br>(+5.7 %)</td><td>20<br>(+11.5 %)</td><td>23.1<br>(+15.5 %)</td><td>24.7<br>(+9.7 %)</td><td>27.7<br>(+0.8 %)</td><td>18.9<br>(+10.3 %)</td><td>20.8<br>(+16.9 %)</td></tr><tr><td>% predicted VO2max #1</td><td>69.1<br>(+5.7 %)</td><td>73.7<br>(+12.1 %)</td><td>104.5<br>(+12.1 %)</td><td>116.6<br>(+8.2 %)</td><td>58.4<br>(+2.2 %)</td><td>58.9<br>(+0.2 %)</td><td>73.9<br>(+20.1 %)</td><td>86.4<br>(+24.1 %)</td></tr><tr><td>Impaired VO2max (n) #2</td><td>9<br>(+2 %)</td><td>7<br>(+12.4 %)</td><td>0<br>(+8.2 %)</td><td>0<br>(+8.2 %)</td><td>6<br>(+0.2 %)</td><td>5<br>(+0.2 %)</td><td>3<br>(+2.73 %)</td><td>2<br>(+6.4 %)</td></tr><tr><td>SVI (ml/kg/min)</td><td>17.1<br>(+2 %)</td><td>17.56<br>(+12.4 %)</td><td>14.5<br>(+8.2 %)</td><td>16.2<br>(+2.7 %)</td><td>18.4<br>(+2.2 %)</td><td>18<br>(+0.8 %)</td><td>13.7<br>(+2.73 %)</td><td>16.4<br>(+2.73 %)</td></tr><tr><td>% predicted VO2max #1</td><td>50.7<br>(+12.4 %)</td><td>57<br>(+8.2 %)</td><td>79<br>(+8.2 %)</td><td>85.5<br>(+2.7 %)</td><td>41.4<br>(+0.2 %)</td><td>41.5<br>(+0.2 %)</td><td>55<br>(+2.73 %)</td><td>69.5<br>(+24.1 %)</td></tr><tr><td>Impaired VT1 (n) #3</td><td>7<br>(+44.93 %)</td><td>6<br>(+21.2 %)</td><td>0<br>(+9.3 %)</td><td>0<br>(+9.3 %)</td><td>5<br>(+31.58 %)</td><td>5<br>(+32.3 %)</td><td>1<br>(+4.6 %)</td><td>1<br>(+4.6 %)</td></tr><tr><td>5FSTS (sec) *</td><td>13.9<br>(+7.6 %)</td><td>7.7<br>(+4.51 %)</td><td>11<br>(+9.3 %)</td><td>8<br>(+21.78 %)</td><td>430<br>(+2.7 %)</td><td>569<br>(+2.7 %)</td><td>467<br>(+2.7 %)</td><td>488<br>(+2.7 %)</td></tr><tr><td>6MWT (m) *</td><td>62.1<br>(+7.6 %)</td><td>66.9<br>(+2.7 %)</td><td>53.6<br>(+12.59 %)</td><td>60.3<br>(+2.7 %)</td><td>65.1<br>(+2.6 %)</td><td>66.8<br>(+2.7 %)</td><td>70.4<br>(+3.6 %)</td><td>67.9<br>(+12.3 %)</td></tr><tr><td>PedsQL 4.0 (/100)</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Child *</td><td>62.1<br>(+7.6 %)</td><td>66.9<br>(+2.7 %)</td><td>53.6<br>(+12.59 %)</td><td>60.3<br>(+2.7 %)</td><td>65.1<br>(+2.6 %)</td><td>66.8<br>(+2.7 %)</td><td>70.4<br>(+3.6 %)</td><td>67.9<br>(+12.3 %)</td></tr><tr><td>Parents</td><td>57.6<br>(+4.51 %)</td><td>55<br>(+2.7 %)</td><td>61.4<br>(+2.7 %)</td><td>59.4<br>(+2.7 %)</td><td>75<br>(+2.7 %)</td><td>59.7<br>(+2.7 %)</td><td>44<br>(+2.7 %)</td><td>49.4<br>(+2.7 %)</td></tr><tr><td>Peds Facit-F (/52)</td><td>37.5<br>(+9.3 %)</td><td>34<br>(+2.7 %)</td><td>28.5<br>(+2.7 %)</td><td>37.5<br>(+2.7 %)</td><td>25.5<br>(+2.7 %)</td><td>24<br>(+2.7 %)</td><td>45<br>(+2.7 %)</td><td>42.5<br>(+2.7 %)</td></tr><tr><td>CAPAS-Q</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Overall physical activity</td><td>2.1<br>(+4.67 %)</td><td>2.2<br>(+2.7 %)</td><td>2.3<br>(+2.7 %)</td><td>2.7<br>(+2.7 %)</td><td>2.1<br>(+7.94 %)</td><td>2.3<br>(+2.7 %)</td><td>2.1<br>(+10.48 %)</td><td>1.9<br>(+2.7 %)</td></tr><tr><td>Physical activity at school</td><td>2.3<br>(+0 %)</td><td>2.3<br>(+2.7 %)</td><td>2.5<br>(+2.7 %)</td><td>2.7<br>(+2.7 %)</td><td>2.3<br>(+5.26 %)</td><td>2.4<br>(+2.7 %)</td><td>2.3<br>(+2.7 %)</td><td>2.1<br>(+2.7 %)</td></tr><tr><td>Physical activity outside of school</td><td>2<br>(+6.47 %)</td><td>2.1<br>(+2.7 %)</td><td>2.1<br>(+2.7 %)</td><td>2.8<br>(+2.7 %)</td><td>2.1<br>(+2.7 %)</td><td>2.3<br>(+2.7 %)</td><td>1.9<br>(+2.7 %)</td><td>1.6<br>(+2.7 %)</td></tr><tr><td>Sports and leisure activities</td><td>1.2<br>(-27.83 %)</td><td>0.8<br>(+2.7 %)</td><td>0<br>(+2.7 %)</td><td>0<br>(+2.7 %)</td><td>0.8<br>(+2.7 %)</td><td>0.7<br>(+2.7 %)</td><td>2.1<br>(+2.7 %)</td><td>1.4<br>(+2.7 %)</td></tr><tr><td>Sedentary behavior</td><td>3.1<br>(-2.61 %)</td><td>2.9<br>(+2.7 %)</td><td>3.4<br>(+2.7 %)</td><td>3<br>(+2.7 %)</td><td>2.9<br>(+2.7 %)</td><td>3.1<br>(+2.7 %)</td><td>3.2<br>(+2.7 %)</td><td>2.7<br>(+2.7 %)</td></tr><tr><td>Sedentary behavior at school</td><td>3.4<br>(-13.9 %)</td><td>2.9<br>(+2.7 %)</td><td>3.7<br>(+2.7 %)</td><td>3.5<br>(+2.7 %)</td><td>3.3<br>(+2.7 %)</td><td>2.7<br>(+2.7 %)</td><td>3.3<br>(+2.7 %)</td><td>2.9<br>(+2.7 %)</td></tr><tr><td>Sedentary behavior outside of school</td><td>3.3<br>(-1.85 %)</td><td>3.2<br>(+2.7 %)</td><td>3.2<br>(+2.7 %)</td><td>2.5<br>(+2.7 %)</td><td>3.1<br>(+2.7 %)</td><td>3.5<br>(+2.7 %)</td><td>3.5<br>(+2.7 %)</td><td>3.1<br>(+2.7 %)</td></tr><tr><td>Transportation</td><td>1.9<br>(+12.43 %)</td><td>2.1<br>(+2.7 %)</td><td>4<br>(+2.7 %)</td><td>4.3<br>(+2.7 %)</td><td>1.4<br>(+2.7 %)</td><td>1.6<br>(+2.7 %)</td><td>1.5<br>(+2.7 %)</td><td>.8<br>(+2.7 %)</td></tr></tbody></table>

* Significant difference (in bold) between pre and post-intervention measurements revealed by the Wilcoxon test.

a Due to missing data, some analyses were performed on samples with N = 12.

#1 Peak VO2max or SVI, as a function of predicted VO2max using the height-based Cooper's equations (%) [29];

#2 Number of children/adolescents with impaired aerobic physical activity (VO2max max < 80 % of predicted values);

#3 Number of children/adolescents with physical deconditioning (VT1 < 55 % of predicted VO2max).

Abbreviations: BMI: Body Mass Index; VT1: Ventilatory Threshold 1; 5FSTS: Five Time Sit to Stand Test; 6MWT: 6-Minute Walk Test; PedsQL 4.0: The Pediatric Quality of Life Inventory Version 4; Peds Facit-F: Pediatric Functional Assessment of Chronic Illness Therapy-Fatigue; CAPAS-Q: Children and Adolescents Physical Activity and Sedentary - Questionnaire.

shows a significant improvement in quality-of-life measures. Indeed, the PedsQL questionnaire, when completed by patients before the first APA session, showed a median score of 62.1 vs 66.9 (/100) at the end of the APA programme. Consistently, the current data confirmed that paediatric patients reported worse Health-Related Quality of Life than the general population, and the importance of monitoring this outcome in daily clinical practice for detecting mental problems early [30]. Although further confirmation of clinical benefit in a large cohort of young patients is needed, the improvement in Quality of Life observed here suggests a positive impact of APA intervention on patients' physical and psychological health, as well as on dimensions of their social and emotional well-being. This is in line with the work of Speyer et al. [30], who

demonstrated the effectiveness of an APA programme on the quality of life in children with cancer. Indeed, exercise helps young patients better tolerate the adverse effects of their treatment, supports social interaction with peers, and—perhaps most importantly—allows them to feel like ‘others of their age’ [31]. These findings highlight the importance of encouraging the adoption and continuation of exercise and physical activity as an integral part of the care routine for these children and adolescents with congenital heart disease, obesity and sickle cell disease [32]. This key issue is reinforced regarding their initial profiles of (un-healthy) physical activity and sedentary behaviour (see the CAPAS-Q scores in Table 3) that needs to be improved [20]
## 4.1. Limitations

Majors limitations need to be addressed. The current pilot design was a pre-post single-arm study. Because of this lack of a control group and the very small size of our pilot sample (N = 13, which reduces the study's power and increases the margin of error), the current findings should be interpreted with caution. Hence these first results encourage us to move on to the next step with a larger, ideally randomized and controlled implementation study.

## 5. Conclusion

These preliminary results are very promising; this is an invitation to move on toward a large RCT to assess the impact of the APA program on global health in children and adolescents with chronic disease.

## Declaration of competing interest

The authors declare no conflicts of interest.

## Acknowledgments

This research received no specific grant from any funding agency, commercial sponsor or not-for-profit sector.

## Supplementary materials

Supplementary material associated with this article can be found, in the online version, at doi:10.1016/j.arcped.2025.12.001.

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