Medically Related Post-traumatic Stress in Children and Adolescents with Congenital Heart Defects.

Medically Related Post-traumatic Stress in Children and Adolescents with Congenital Heart Defects.

Meentken MG, van Beynum IM, Legerstee JS, Helbing WA, Utens EM.Front Pediatr. 2017 Feb 13;5:20. doi: 10.3389/fped.2017.00020. eCollection 2017.PMID: 28243582 

Commentary by:

Faith Ross, MD, MS, Seattle Children’s Hospital, University of Washington, Seattle, WA

Katherine Zaleski, MD, Boston Children’s Hospital, Harvard University, Boston, MA

Take Home Points:

• Children and adolescents with congenital heart disease often require multiple hospitalizations, diagnostic studies, and procedures that put them at an increased risk for medically-related post-traumatic stress.
• Several small studies have investigated post-traumatic stress in children and adolescents with congenital or acquired heart disease, however, their findings are limited by heterogeneous samples and differences in terminology, measurement instruments, and duration of follow-up. 
• Within the pediatric congenital heart disease patient population, more research is necessary in order to better define the prevalence of traumatic stress reactions, understand risk factors, and define the role of early screening and intervention.
• Clinicians caring for children and adolescents with congenital heart disease should be cognizant of the elevated risk of post-traumatic stress in this patient population and practice trauma-informed care.

Summary:

For children and adolescents, illness, injury, and their resultant medical encounters can lead to significant acute physical and psychological distress.  This may continue long after the event as a more persistent post-traumatic stress (PTS) reaction, such as post-traumatic stress disorder (PTSD).^1-3  Risk factors for the development of PTSD in this population are inconsistent across studies, however, younger patient age, the subjective experience (versus actual severity) of trauma or a threat to life, length of hospitalization, intensive care unit admission, physiologic response to the injury, history of anxiety and depression or aggressive behavior, dysfunctional cognitive strategies, and parental factors have all been implicated.^1-3   

Children and adolescents with congenital heart disease (CHD) often require regular check-ups, frequent diagnostic studies, and recurring hospitalizations for invasive procedures or medical stabilization that begin at a very young age. These repeated exposures to frightening and often painful experiences may potentially place them at a heightened risk of PTSD.  Little is known, however, about the incidence and risk factors for PTS/PTSD in children and adolescents with CHD.  In the February 2017 issue of Frontiers in Pediatrics, Meentken et al. published a mini-review entitled “Medically Related Post-traumatic Stress in Children and Adolescents with Congenital Heart Defects” in which they aimed to provide a summary of the five existing PTS studies in children and adolescents with congenital or acquired heart disease, describing both prevalence and predictors/correlates⁴.

As noted by the authors, the appraisal of the CHD PTS literature is somewhat complicated by discrepancies in the terminology used to describe PTS. Post-traumatic stress describes an acute emotional reaction to a stressful event that does not necessarily lead to persistent maladaptive symptoms.⁵ Post-traumatic Stress Symptoms (PTSS) describe the physical and emotional symptoms experienced after trauma including flashbacks, avoidance, and difficulty sleeping among others. PTSD describes the long-term persistence of a specific constellation of distressing PTSS. An official diagnosis of PTSD, as defined by the Diagnostic and Statistical manual of Mental health (DSM) requires specific criteria to be met.  These differ between the fourth and fifth editions (DSM-IV and DSM-V, respectively), but generally involve the presence of specific symptoms in several “clusters” including intrusive re-experiencing of the trauma, avoidance of situations that produce reminders of the traumatic event, alterations in mood and cognition, and increased arousal and reactivity.^6,7 Lastly, subthreshold PTSD (also referred to in the literature as elevated PTSS, or partial, subclinical, or subsyndromal PTSD) describes PTSS that does not meet the strict DSM definition of PTSD.⁸ More recently, the term pediatric medical traumatic stress (PMTS) has been used to describe subthreshold PTSD following pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences specifically in children and their families.^9,10

Further complicating things, there are several validated diagnostic instruments that have been used to measure PTSS in children and adolescents, three of which are used in the pediatric CHD PTSD literature^4,11.  These include the Diagnostic Interview Schedule for Children (DISC), the University of California at Los Angeles post-traumatic Stress Disorder Reaction Index (UCLA PTSD-RI), and the Impact of Event Scale-Revised (IES-R). The DISC is used to screen for a variety of pediatric psychiatric diagnoses and includes a child version appropriate for children aged 9-17 years as well as a parent version that can be used for children as young as 6 years of age.¹² The UCLA PTSD-RI and IES-R are focused strictly on stress-related symptoms.^13,14 The UCLA PTSD-RI has child, adolescent, and parent versions that can be completed either verbally or on paper.  There are established norms for children and adolescents between 7 and 18 years of age.   

The five studies included in the mini-review by Meentken et al. studied pediatric patients who underwent heart surgery, heart transplantation, and implantable cardioverter-defibrillator (ICD) placement.  Four of the studies utilized one of the aforementioned standardized instruments. In the first study reviewed, Connolly et al. examined the incidence of PTSD in 43 children aged 5-12 years undergoing heart surgery. At assessment 4-8 weeks after surgery, 12% of the children met the criteria for PTSD using the DISC anxiety disorder module. They found that longer ICU length of stay (> 48 hours) was associated with an increased risk of PTSD, whereas other factors including cognitive level, family support, and patient temperament were not.¹⁵ In another study conducted by Toren and Horesh, 29% of adolescents with cyanotic CHD had “likely” PTSD following cardiac surgery using the UCLA PTSD-RI. PTSS were present in these patients even when surveyed at an average of 13.7 years after their initial operation, suggesting that these symptoms, when present, can be incredibly enduring.¹⁶

Mintzer et al. used the UCLA PTSD-RI to evaluate 104 heart transplant recipients who received their transplants between the ages of 12 and 20 years of age.¹⁷ 16.3% of patients met the criteria for PTSD, while an additional 14.4% met partial criteria at an average of 7.3 years after their surgery. They found no relationship between patient demographics or time since transplant and PTSS severity, however, acuity of onset of heart disease and the severity of medical complications over the past year were predictors of PTSS. Patients with acute onset of illness and, counterintuitively, milder complications were more likely to have PTSS. Similarly, Evan et al. found that 34% of pediatric and adolescent heart transplant patients had evidence of PTSS on medical chart review up to 1 year after transplantation.¹⁸ Additionally, 43% of patients had PTSS in the immediate post-transplant period. None of these patients, however, had a full diagnosis of PTSD.  The study was limited in that the patients were not evaluated prospectively with a validated psychological diagnostic instrument. 

Ingels et al. studied 90 young adults (age greater than 15 years) who underwent ICD placement at least 12 months prior.¹⁹  The IES-R was used to evaluate adolescent patients with an ICD who had received at least one ICD shock.  Anxiety (38%), depression (17%) and PTS (31%) were common among patients. Among those who had experienced an ICD shock, female gender and longer time to first shock were associated with higher PTS scores.

What does this mean for our practice?

            As the mini-review by Meentken et al. demonstrates, there is a dearth of literature regarding PTS and PTSD in children and adolescents with CHD. Furthermore, it is difficult to draw clear conclusions from the extant studies due to small, heterogeneous samples as well as differences in PTS terminology, measurement instruments, and duration of follow-up.  Notwithstanding these limitations, children and adolescents with CHD do seem to be at a heightened risk of PTS and PTSD which is not entirely surprising given that they must often undergo repeated stressful procedures. The reported prevalence of PTSS and PTSD in this series of studies ranged from 12-14% and 12-31%, respectively.  This is comparable to the prevalence of PTSD seen in hospitalized pediatric patients without heart disease as well as adults with congenital heart disease, but higher than the lifetime prevalence of PTSD seen in the general adolescent population.^3,20,21 Further studies are needed in order to better understand prevalence, define risk factors, and gauge the effectiveness of screening and treatment strategies.

Traumatic stress reactions can have consequences beyond the distressing symptoms of PTS/PTSD itself. The development of PTSD is associated with decreased sleep quality, reduced academic performance, and an overall impaired quality of life.^22-25 PTSD is alsoassociated with maladaptive alterations in future healthcare utilization, leading to decreased treatment compliance and an increase in healthcare utilization.^4,26 This may be particularly impactful in a patient population that often requires lifelong medical care. 

Clinicians caring for children and adolescents with CHD should be cognizant of the risks of PTSD in this population and practice trauma-informed care.  Measures should be taken to alleviate patient anxiety and minimize painful experiences to every extent possible. Early screening for PTS and PTSD as well as early referral for psychosocial health services should be considered for all patients with CHD.  Additionally, further attention should be paid to the development and evaluation of evidence-supported interventions in pediatric and adolescent patients which have lagged behind those utilized for adults.

References:

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