Sports Participation and Quality of Life in Adolescents and Young Adults with Congenital Heart Disease Peter N. Dean, MD,* Catherine W. Gillespie, MPH, PhD,† Elizabeth Anne Greene, MD,* Gail D. Pearson, MD, ScD,* Adelaide S. Robb, MD,‡ Charles I. Berul, MD,* and Jonathan R. Kaltman, MD* Divisions of *Cardiology and ‡Psychiatry, and †Center for Translational Science, Children’s National Health System, Washington, DC, USA ABSTRACT

Background. Adolescents and young adults with congenital heart disease (CHD) are often restricted from physical activity and sports participation, which may have adverse effects. Objectives. To determine the amount of physical activity, type of sports participation, and reasons for sports restrictions, and to evaluate the effect of sports participation on quality of life (QoL) in a cohort of patients with CHD. Methods. Individuals with CHD aged 13–30 years were recruited at outpatient visits or via mailings. They completed a questionnaire addressing physical activity, sports participation, sports restrictions, and QoL (Pediatric Quality of Life Inventory). We also reviewed the patient’s medical record. Results. Of the 177 patients who responded (mean age 20 years), 31% have mild CHD, 40% have moderate CHD, and 29% have severe CHD. In the cohort, 52% participate in competitive sports, 25% recreational sports, and 23% no sports. Among patients with severe CHD, 29% participate in competitive sports that would be restricted by published guidelines (36th Bethesda Conference). After controlling for age, sex, CHD severity, residual hemodynamic disease, and comorbidities, participation in competitive sports and increased frequency of physical activity are independently associated with a higher QoL (P = .003 and P = .001, respectively). In an identical model, competitive sports participation and frequency of physical activity are associated with higher maximum predicted oxygen consumption (VO2) (n = 40; P = .002 and .02) and slightly lower body mass index (BMI) (P = .02 and .01). All findings were similar when analyses were stratified by recruitment method. Conclusions. Patients with CHD commonly participate in competitive sports, and such participation is associated with higher QoL, improved exercise capacity, and lower BMI. Key Words. Congenital Heart Disease; Adult Congenital Heart Disease; Sports Cardiology; Sports Participation


This article has only been submitted to Congenital Heart Disease and has not been submitted elsewhere. None of the article’s contents have been previously published. All authors have read and approved the final manuscript. Abstract presented at the American College of Cardiology’s 63rd Scientific Session, March 30, 2014, Washington, DC. Relationship with Industry: None. © 2014 Wiley Periodicals, Inc.


utcomes for patients with congenital heart disease (CHD) have greatly improved with many surviving into their adult years. Many patients, even those with the most severe forms of CHD, can achieve normal exercise performance.1,2 Despite this, many adolescents and young adults with CHD are restricted from sports participation.3,4 These restrictions are primarily driven by expert opinion5,6 and are not fully supported by scientific evidence.7–9 Congenit Heart Dis. 2015;10:169–179

170 Sports participation may benefit patients with CHD in several ways. First, regular physical activity has been shown to improve cardiac performance in patients with CHD.10,11 Second, physical activity helps prevent obesity, a well-recognized problem for individuals with CHD.12 Third, physical activity and sports participation appear to be important for self-esteem, social inclusion, and academic performance in healthy populations.13,14 For these reasons, restricting patients from sports participation when there is no clear evidence for doing so may not be a benign decision and may have significant psychological implications.15 Restricting patients may also falsely reassure physicians, patients, and families. Only a small fraction (∼10%) of sudden deaths in CHD patients occur during physical activity,16 and even with restrictions in place, patients may still participate in activity intensities during routine daily living that predispose them to sudden death.17 Few studies, all international, have evaluated sports participation in adolescents and young adults with CHD.18–22 Only one of these international studies evaluated specific types of sports participation;18 none assessed the intensity of sports participation, types of sports restrictions, or the relationship to quality of life (QoL). In order to create appropriate sports participation recommendations and guidelines for patients with CHD, a first step is to understand the type and intensity of sports participation in CHD patients and understand how sports participation or sports restrictions impact their QoL. Our study evaluated whether competitive sports participation corresponds with expert guidelines and whether competitive sports participation is associated with higher QoL in a cohort of patients with CHD. Methods

Study Design In this cross-sectional cohort study, individuals 13–30 years old with CHD were asked to complete a study questionnaire at routine outpatient appointments or by mailings during a 10-month period. Mailings were sent to all patients who had a billing code for CHD at an outpatient visit at our institution in the previous 3 years. Inclusion criteria were age between 13–30 years at the time of recruitment and a diagnosis of CHD. The sole exclusion criterion was failure to obtain consent or assent. For patients 13–17 years old, we obtained written parental consent and written patient Congenit Heart Dis. 2015;10:169–179

Dean et al. assent, and for patients 18–30 years old, we obtained written consent. The study was approved by the Children’s National Health System Institutional Review Board.

Study Questionnaire The study questionnaire contained three sections (Appendix S1). In the first section, four questions addressed physical activity and screen time (television or computer time) derived from the 2011 Centers for Disease Control Youth Risk Behavior Survey, a national survey that has been administered to high school students across the United States for over two decades.23 The next section contained four questions addressing type and intensity of sports participation and type of sports restrictions. The last section was the Pediatric Quality of Life Inventory (PedsQL 4.0, either Teen Report or Adult report depending on age)24,25 which has previously been used in patients with CHD26,27 and cardiac devices.28 Competitive sports were defined as any sport with organized practices and competitions.6 This category included club sports, intramural sports, and school-based sports teams (which were further broken down into middle school or high school junior varsity, high school varsity, and collegelevel sports). Recreational sports were defined as sports that were not formally organized and had no associated practices. Medical Record Review After obtaining a completed questionnaire, we queried the medical record to determine the individual’s underlying diagnosis, previous interventions, residual hemodynamic abnormalities, comorbid medical conditions, medications, symptoms, most recent body mass index (BMI), exercise stress testing results (when available), and sports participation recommendations documented by the primary cardiologist. The methods for defining comorbid conditions, residual hemodynamic disease, CHD categories, and CHD severity can be found in the online supplement (Appendix S2). Based on the underlying diagnosis and residual cardiac disease, we used the 36th Bethesda Conference Report29,30 to classify sports and determine the type of sports restriction recommended by the expert panel. Statistical Methods Basic demographic characteristics, medical history data (i.e., diagnostic information, recent interventions, and hemodynamic status), anthropometrics

Congenital Heart Disease Sports Participation and self-reported sedentary behaviors, physical activity, sports participation, and QoL were summarized overall and by method of recruitment (clinic vs. mail) and age group (adolescent vs. young adult). Categorical characteristics were compared using Pearson’s χ2 tests and Fisher’s exact tests. Continuous data were compared across groups using two-sample t-tests and Wilcoxon rank sum tests. A series of multivariable linear regression models were used to assess relationships of frequency of physical activity, type of sports participation, and self-reported sports restrictions with PedsQL score, BMI, maximum predicted oxygen consumption (VO2), and exercise stress test time overall and stratified by method of recruitment. All multivariable models controlled for age, sex, disease severity (mild, moderate, or severe), residual hemodynamic disease, and presence of comorbidities. We evaluated the presence of a linear trend in adjusted PedsQL scores across ordered groups of our “type of athlete” variable (i.e., nonathlete, recreational only, and competitive) using an F statistic based on a contrast of the regression coefficients for this categorical predictor. Given the exploratory nature of this study, no adjustments for multiple comparisons were made. All analyses were performed in stata version 13.1 (StataCorp, College Station, TX, USA). Results

Study Population Recruitment letters were sent to 1445 patients. From these mailings, 146 patients expressed interest and were mailed the questionnaire; 87 returned the questionnaire. Of the 87 patients, 13 did not meet inclusion criteria, leaving 74 (5.1% of initial mailings) patients. An additional 116 patients were enrolled at outpatient visits. Of these patients, 13 did not meet inclusion criteria, yielding a total of 177 patients in our final study cohort. In our cohort, the mean age was 19.5 years, 47% were male, and 29% had severe CHD. Table 1 displays a summary of sample characteristics by age group. Compared with those recruited by mail, patients enrolled from outpatient visits were older, more likely to have severe disease, and less likely to participate in sports (Table 2). Although we were not able to review the medical records for the patients who did not respond to our mailings, we were able to estimate the severity of their CHD from their International Classification of Diseases, Ninth Revision (ICD-9) code. In the underlying

171 population of patients who had a billing code for CHD at an outpatient visit, 60% were estimated to have mild CHD, 29% moderate CHD, and 11% severe CHD. While those who responded to our mailings and who were recruited from outpatient visits are more likely to have severe disease, the median age, gender ratio, and state of residence of our study cohort are similar to the underlying patient population (data not shown).

Physical Activity and Sedentary Behavior Physical activity and sedentary behaviors for the cohort are summarized in Table 3, alongside estimates derived from the 2011 Centers for Disease Control Youth Risk Behavior Surveillance (CDC YRBS).23 In our adolescent cohort, 18.6% reported physical activity of at least 60 minutes 7 days per week, and 39.5% reported physical activity 5 or more days per week, compared with 28.7% and 49.5%, respectively, of the nationally representative sample. Type and Intensity of Sports Participation The majority of CHD patients in our study report some recreational or competitive sports participation (Table 3). Male patients with CHD participate more often in competitive sports (60%) than female patients (45%, P = .04). In the cohort, 28 patients participate in high school varsity-level competitive sports (32% of patients 13–18 years old) and 6 participate in collegiate sports (12% of patients aged 19–23 years). Of the high school varsity-level athletes, nine have severe CHD, five have moderate CHD, and 15 have mild CHD. Of the collegiate athletes, one has severe CHD (repaired transposition of the great arteries), three have moderate CHD (repaired total anomalous pulmonary venous drainage, repaired critical pulmonary stenosis, and repaired aortic stenosis with ventricular septal defect [VSD]), and two have mild CHD (unrepaired, pressure restrictive VSD and surgically repaired atrial septal defect). Patients with mild CHD are more likely to participate in competitive sports (69%) than patients with moderate or severe CHD (44% and 45%) (P = .009). Of the 51 patients with severe CHD, 23 (45%) participate in some type of competitive sports, and 15 (29%) participate in a sport not recommended by the 36th Bethesda guidelines (Table 4). Of the 15 patients who have undergone a Fontan procedure, seven (47%) participate in a competitive sport (Table 5), none of which would be recommended by 36th Bethesda guidelines. Congenit Heart Dis. 2015;10:169–179

172 Table 1.

Dean et al. Characteristics of the Cohort by Age Category

Characteristics Recruitment method Clinic Mailing Age (years) Gender Female Male BMI (kg/m2) Severity of congenital heart disease Mild Moderate Severe Cardiac diagnoses‡ Septal defect Aortic arch anomaly Left ventricular obstruction Right ventricular obstruction Atrioventricular valve anomaly Conotruncal defect Single ventricle Pulmonary venous abnormality Coronary artery anomaly Type of intervention‡ Complete two-ventricle repair Fontan procedure Mustard or Senning procedure Arterial switch procedure Tetrology of Fallot repair RV-PA conduit Catheter intervention Prosthetic valve replacement Mechanical valve replacement Pacemaker/ICD No prior interventions

Overall n = 177 n (%) or Mean (SD)

Adolescents (13–18 Years) n = 88 n (%) or Mean (SD)

Young Adults (19–30 Years) n = 89 n (%) or Mean (SD)

103 (58.2) 74 (41.8) 19.5 (4.7)

44 (50.0) 44 (50.0) 15.6 (1.7)

59 (66.3) 30 (33.7) 23.3 (3.3)

94 (53.1) 83 (46.9) 23.6 (5.2)

39 (44.3) 49 (55.7) 22.5 (4.8)

55 (61.8) 34 (38.2) 24.6 (5.4)


55 (31.1) 71 (40.1) 51 (28.8)

36 (40.9) 31 (35.2) 21 (23.9)

19 (21.4) 40 (44.9) 30 (33.7)


80 (45.2) 16 (9.0) 20 (11.3) 17 (9.6) 9 (5.1) 47 (26.6) 15 (8.5) 11 (6.2) 6 (3.4)

42 (47.7) 8 (9.1) 9 (10.2) 8 (9.1) 4 (4.6) 22 (25.0) 6 (6.8) 3 (3.4) 2 (2.3)

38 (42.7) 8 (9.0) 11 (12.4) 9 (10.1) 5 (5.6) 25 (28.1) 9 (10.1) 8 (9.0) 4 (4.5)

.501 .981 .654 .818 1.000† .642 .431 .212† .682†

84 (47.5) 15 (8.5) 4 (2.3) 6 (3.4) 20 (11.3) 17 (9.6) 22 (12.4) 10 (5.7) 6 (3.4) 21 (11.9) 35 (19.8)

32 (36.4) 6 (6.8) 0 (0.0) 3 (3.4) 11 (12.5) 11 (12.5) 13 (14.8) 5 (5.7) 1 (1.1) 7 (8.0) 28 (31.8)

52 (58.4) 9 (10.1) 4 (4.5) 3 (3.4) 9 (10.1) 6 (6.7) 9 (10.1) 5 (5.6) 5 (5.6) 14 (15.7) 7 (7.9)

.003 .431 .121† 1.000† .616 .194 .347 1.000† .211† .110

Sports participation and quality of life in adolescents and young adults with congenital heart disease.

Adolescents and young adults with congenital heart disease (CHD) are often restricted from physical activity and sports participation, which may have ...
238KB Sizes 0 Downloads 11 Views