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The impact of diagnosis: measuring the psychological response to being diagnosed with serious or potentially lethal cardiac disease in young competitive athletes
  1. Irfan M Asif1,
  2. David E Price2,
  3. Alex Ewing1,
  4. Ashwin L Rao3,
  5. Kimberly G Harmon3,
  6. Jonathan A Drezner3
  1. 1Greenville Health System/University of South Carolina Greenville School of Medicine, Greenville, South Carolina, USA
  2. 2Carolinas Medical Center, Charlotte, North Carolina, USA
  3. 3University of Washington, Seattle, Washington, USA
  1. Correspondence to Dr Irfan M Asif, Greenville Health System/University of South Carolina Greenville School of Medicine, Greenville, SC 29650, USA; IAsif{at}sc.edu

Abstract

Aim To determine the psychological impact of athletes diagnosed with cardiac disease.

Methods and design Athletes diagnosed with cardiovascular disorders were recruited to complete the Impact of Event Scale (IES), a validated tool measuring responses to a traumatic event. IES scoring =0–88 (<12= normal, 12–32=recommend monitoring, >33=significant stress reaction). Subscales include: intrusion, avoidance and hyperarousal.

Results 30 athletes (53% male, 83% Caucasian, median age 18.0, median age at diagnosis 15.7) participated. Diagnoses included: 6 hypertrophic cardiomyopathy, 9 Wolff Parkinson White, 4 Long QT syndrome, 3 atrial septal defect, 2 supraventricular tachycardia and 6 other. For the group, the mean IES-Revised (IES-R) score=16.6 (SD=12.1), subscales: intrusion 6.6 (SD=4.3), avoidance=7.4 (SD=6.5), hyperarousal=2.7 (SD=3.5). Higher risk individuals included: permanently disqualified athletes (p<0.01), athletes requiring daily medication (p<0.01), those with genetically inheritable conditions (p<0.01), and athletes undergoing medical management instead of definitive therapy (p<0.01). No differences were reported by gender (male=16.6, female=16.6). Higher IES-R scores were reported in more competitive athletes (college=17.8, high school=13.3; p=0.369) and African-American individuals (African-American=25.8, Caucasian=14.8 p=0.061), although not statistically significant. Athletes with cardiomyopathy (IES-R=24) and channelopathy (IES-R=28) reported the highest IES results. Athletes with high IES-R scores were most likely to psychologically respond through avoidance of feelings/situations/ideas.

Conclusions Athletes diagnosed with potentially lethal cardiac disorders are at risk for significant psychological distress. These athletes tend to avoid thoughts, feelings and conversations associated with their diagnosis and should be offered consistent emotional support to mitigate psychological morbidity.

Significance Currently, there are no recommendations to guide physicians on how to support an athlete that is newly diagnosed with a potentially career altering heart condition. Proper planning and use of appropriate support mechanisms can be useful for emotionally vulnerable athletes.

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Introduction

Cardiovascular screening prior to participation in competitive athletics is an increasingly common practice in sports medicine. A research agenda from a working group of the National Heart, Lung, and Blood Institute placed emphasis on understanding the psychological impact of cardiovascular screening in young individuals and athletes.1 Until recently, this was a largely uninvestigated field. Studies have shown that athletes who have normal cardiovascular screenings, and also those with false-positive results, do not report excessive anxiety after receiving their screening outcomes regardless of screening with medical history and physical examination or ECG.2–4 However, athletes identified with cardiovascular disease describe psychological morbidity following their diagnosis.

The demands of being a young athlete are different than the general public. Athletes represent a unique population and those diagnosed with a cardiac disorder may have distinctive psychological effects that relate to their identity as an athlete. This might particularly be true for athletes who are restricted from athletics following their diagnosis. Additionally, athletic restriction may provoke increased psychological morbidity if the athlete has used their sport as a means of coping.

Only one study, which was qualitative in nature, has examined the stages of impact following the diagnosis of cardiovascular disease in young athletes.3 However, no study has characterised the psychological response using quantitative methodology. The purpose of this study was to measure the psychological impact of a cardiovascular diagnosis in a cohort of young athletes using a quantitative assessment tool with the goal of identifying potential high-risk subgroups.

Methods

This was a cross-sectional study examining the impact of a cardiovascular diagnosis on young athletes, which was measured using the Impact of Event Scale-Revised (IES-R). The IES-R is a 22-item validated tool that has been used to measure responses in a variety of traumatic groups. Although the IES-R was originally developed to measure responses in patients with post-traumatic stress disorder, it has been widely adopted as an instrument to measure the psychological response in a number of other conditions, including the diagnosis of malignancies, cardiovascular disorders, natural disasters and other potentially distressing events.5–8

Study instrument

The IES-R measures responses to a specific traumatic event, especially with regard to reactions of intrusion (intrusive thoughts, nightmares, intrusive feelings and imagery, dissociation), avoidance (numbing, avoidance of feelings/situations/ideas) and hyperarousal (anger, irritability, hypervigilence, difficulty with concentration). For the three subscales, eight items are devoted to intrusive thoughts, eight items to avoidance and six items for hyperarousal. These items show a high degree of intercorrelation (rs=0.52–0.87).9 High levels of internal consistency have been previously reported (intrusion: Cronbach's α=0.87–0.94, avoidance: Cronbach's α=0.84–0.87, hyperarousal: Cronbach's α 0.79–0.91).10 ,9 Test–retest reliability has been excellent when collected across a 6-month interval, ranging from 0.89 to 0.94.10 Each of the 22-items is scored from 0 to 4 as a response to the event, ranging from 0=no distress to 4=extreme distress. Total scores range from 0 to 88, with scores >33 signalling a significant stress reaction, and a score <12 consistent with no significant stress response. Scores of 12–32 fall within a range for which continued monitoring is appropriate.

Subjects

Athletes were recruited (February 2013 to June 2014) from several sources including community heart screening programmes located across the USA, high school and college team physicians, primary care physicians and cardiologists. After agreeing to interview, athletes were contacted via telephone to complete the IES-R. For consistency, the IES-R was administered by the same individual (IA). Administration of the instrument typically took <5 min.

To participate, athletes must have been:

  1. Diagnosed with a serious or potentially lethal cardiovascular disorder.

  2. Between the ages of 14 and 35 and engaged in competitive athletics at the time of diagnosis.

  3. At least 6 months beyond their diagnosis.

Data analysis

All reported values are means±SDs. Analysis of variance was used to test differences in more than two groups. Student’s t test was used in bivariate comparisons. p Values <0.05 were indicative of statistical significance. The data was stratified by diagnosis, continued sports participation following diagnosis, whether the disease was genetically inheritable, treatment modalities (eg, necessity for invasive procedures, daily medication), age, race and gender.

Results

Thirty athletes (53% male, 83% Caucasian, median age during IES-R administration=18.0, median age at diagnosis=15.7) participated in this study (table 1). For the group, the mean IES-R score was 16.6 (SD=12.1) with the following subscales: intrusion 6.6 (SD=4.3), avoidance=7.4 (SD=6.5) and hyperarousal=2.7 (SD=3.5).

Table 1

Demographic information for study participants

The highest IES-R scores were reported in patients with cardiomyopathy (24.0, SD+9.1) and channelopathy (28.3, SD=17.0) (table 2). Athletes who were permanently disqualified from competitive athletics were noted to have significantly higher IES-R scores (n=5, mean IES-R score=30.0, SD=10.8, p<0.01) compared to those who were restricted from some exercise but allowed to participate in certain levels of physical activity (n=5, mean IES-R score=20.2, SD=14.1), or those who had no restriction in athletics (n=20, mean IES-R score=12.4, SD=9.3) (table 3).

Table 2

Results by disease

Table 3

Results by ability to continue play

Athletes diagnosed during participation in collegiate athletics (n=9, mean IES-R score=17.8, SD=11.0) had higher IES-R scores than those diagnosed during high school (n=22, mean IES-R score=13.3, SD=10.5); however, this was not statistically significant (p=0.369). Athletes who were >16 years of age had a higher IES-R score (n=18, mean IES-R score=19.1 SD=11.7) compared to athletes who were <16 years (n=12, mean IES-R score=12.8, SD=12.2) (table 4).

Table 4

IES-R scores by age12

Athletes needing to take daily medication were noted to have significantly higher IES-R scores (n=12, mean IES-R score=23.5, SD=12.3, p<0.01) compared to those who did not (n=18, mean IES-R score=12.0, SD=9.8) (table 5).

Table 5

IES-R scores by the need to take daily medication

Those with genetically inheritable conditions also had significantly higher IES-R scores (n=11, mean IES-R score=24.7, SD=12.1, p<0.01) compared to those who did not (n=19, mean IES-R score=11.9, SD=9.5) (table 6).

Table 6

Results stratified by genetic inheritance

Significantly higher IES-R were reported in athletes undergoing medical management (n=10, mean IES-R score=25.7, SD=12.8, p<0.01) instead of definitive therapy with either a major surgical intervention (n=6, mean IES-R score=12.0, SD=5.7) or minor medical procedure such as an ablation (n=14, mean IES-R score=12.1, SD=10.2).

No differences were reported by gender (mean IES-R for male=16.6, female=16.6) (table 7). African-American individuals (African-American=25.8, SD=9.6, Caucasian=14.8, SD=11.8, p=0.061) reported higher IES-R scores, although this was not statistically significant due to wide CIs.

Table 7

Results by gender

Athletes with high IES scores were most likely to psychologically respond through avoidance of feelings, situations and ideas.

Discussion

Preparticipation cardiovascular screening is required prior to competing in high school and collegiate athletic programmes and is endorsed by major medical and sporting organisations.10 ,9 The objective of cardiac screening is to identify silent cardiovascular disease that may place an athlete at risk for sudden cardiac death (SCD).11 Those who are diagnosed with cardiac disorders may mitigate their risk of SCD through medical management and/or activity modification.

Regardless of the modality used to identify disease (medical history, physical examination, ECG, echocardiogram, etc) the detection of a cardiac disorder should not be the sole end point of care. The psychological consequences postdisease detection should be considered and the athlete healthcare team is often in the best position to assist individuals following diagnosis. Unfortunately, the mental health implications of a diagnosis and the subsequent medical decisions are often overlooked.

This is the first study in young athletes to quantitatively assess the psychological impact of being diagnosed with serious or potentially lethal cardiac disease. Previous studies have demonstrated that cardiovascular screening in athletes with normal or false-positive results does not yield undue anxiety or long-term negative consequences.4 ,2 In fact, the majority of these athletes would recommend advanced cardiovascular screening and were more satisfied with it compared to traditional screening with medical history and physical examination alone, likely due to confidence yielded by a comprehensive screening.4 ,2 On the contrary, athletes diagnosed with a cardiovascular condition do describe anxiety immediately after diagnosis.4 ,2 The current investigation sought to understand the long-term impact of these diagnoses.

The results of this study suggest that all athletes diagnosed with cardiovascular disorders, regardless of disease, should at least be monitored for potential psychological morbidity. Certain diseases and characteristics are associated with an increased potential for emotional burden. For example, the highest IES-R scores were found in athletes with cardiomyopathy and channelopathy, most likely because these diagnoses resulted in permanent disqualification from athletics. Additionally, other higher risk subgroups included: those requiring daily medication, athletes with genetically inheritable conditions and those undergoing medical management instead of definitive therapy to cure their condition.

Athletes in this study with high IES-R scores seemed to score highest on the subscale of avoidance. As a coping mechanism, the avoidance of thoughts may reduce the negative emotions associated with a diagnosis. Individuals may make a deliberate effort to avoid thinking or talking about the event and elude any reminders. Unfortunately, individuals who cope through avoidance may actively push memories of the experience or its aftermath out of their thoughts using methods such as increased alcohol or drug use, overworking, or other methods to divert their attention. Since the athlete healthcare team is responsible for the overall mental health of the athlete, it is imperative to recognise the potential signs of avoidance to prevent further psychological distress or even catastrophic outcomes.

The discussion to inform an athlete that he/she has a serious cardiac condition and must be removed from athletic competition is difficult. Aside from dealing with the condition itself, athletes must often learn to deal with the problem without using his/her most commonly utilised coping mechanism—exercise. Additionally, the threat of involuntary removal from athletic competition places their identity in jeopardy.

Physicians must recognise that these athletes require ongoing communication and emotional support, which are key to develop a strong physician–patient relationship. Following the diagnosis of a serious condition, physicians should allow ample time to present information about the disease, answer questions and plan regular follow-up appointments. In addition, the clinician should recognise that persistent reminders (eg, taking daily medication) or the idea of passing the condition on to offspring may be associated with increased psychological morbidity. This may require additional emotional support, education about the disease and its ramifications, and mechanisms to fill the void left from athletic competition if the athlete is not allowed to continue participation in sports.3

In conjunction with coaches and athletic trainers, athletes who are disqualified from athletic competition could be offered the option to participate in team activities in a non-athletic role. This offers the advantages of maintaining the social support and daily structure afforded by the team environment, which may be one of the only settings that the individual may feel comfortable. However, some athletes who are still grieving may see this as a reminder of their disease and the inability to compete.3 As a result, the option to continue participation in this role should be individualised and account for the athlete's preferences.

Hypothetically, the psychological morbidity associated with the diagnosis of a disease and the resulting exercise restriction could be tempered by defining ways for these individuals to safely continue participation in athletic activity. This may necessitate a paradigm shift in disease management from ‘detect and disqualify’ to ‘detect, inform and manage’.13 Studies in patients with Long QT syndrome and implantable cardioverter defibrillators (ICDs) have shown the value of medical management in decreasing the rate of SCDs during physical activity.14 ,15 Further research is needed to better understand the psychosocial impact of athletes who are diagnosed with a potentially lethal disease, such as cardiomyopathy and channelopathy, but are still allowed to participate in sports.

Limitations

To the best of our knowledge, this represents the first investigation to quantitatively assess this relatively unchartered area of research and provides novel insight into the impact of a cardiovascular diagnosis on an athlete. The sample size may be limited, but this study provides a foundation for future research in this field. Additionally, the heterogeneous mix of diseases in this investigation could be seen as a limitation. However, with no previous research in this field, one could not have assumed that the impact of one disease was different than other. As such, the inclusion of a number of different diseases was necessary and provided valuable information and direction for future work.

Conclusion

Screening for SCD is essential to promote the health and safety of young athletes during sport. The detection of disease often leads to difficult medical and psychosocial challenges. The results of this study suggest that there is a need to address the mental health of athletes following diagnosis with a cardiovascular condition and that there are certain risk factors that may be associated with an increased risk for psychological morbidity. Sports medicine, cardiology and primary care physicians are in a unique position to address the psychological needs of athletes under their care. Further research is needed to define the best strategies for support, but a multidisciplinary approach is likely needed given the different facets of life that are affected by the diagnosis of a serious or potentially lethal cardiac condition in a young athlete.

What are the findings?

  • All athletes diagnosed with cardiovascular disorders, regardless of disease, should at least be monitored for potential psychological morbidity.

  • High-risk individuals included: permanently disqualified athletes, athletes requiring daily medication, those with genetically inheritable conditions, and athletes undergoing medical management instead of definitive therapy.

  • Athletes diagnosed with cardiomyopathy and channelopathy had the highest psychological response scores, most likely because these diagnoses resulted in permanent disqualification from athletics.

How might it impact on clinical practice in the future?

  • Athletes diagnosed with cardiovascular disease should be managed through a multidisciplinary team that include experts who can monitor mental and emotional well-being.

  • Athletes who are disqualified from competition should be offered activities that can fill the void of athletics, which may include assisting on a team in a non-athletic role; however, the option to participate in this role should be individualised as some may see this as a reminder of their inability to compete.

References

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Footnotes

  • Twitter Follow Ashwin Rao at @IrfAsif

  • Funding The study was funded by the American Medical Society for Sports Medicine Foundation.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval This study was approved by the Greenville Health System Institutional Review Board.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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