Title The Mental Health of Adolescents Living with Potentially Fatal Arrhythmia: A Systematic Review of the Literature

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1 PROSPERO Registration of Systematic Review Title The Mental Health of Adolescents Living with Potentially Fatal Arrhythmia: A Systematic Review of the Literature Registration to be registered in PROSPERO Authors Longmuir PE 1, 3, Weekes M 1, Sampson M 2, Patel B 1, Ham J 1, Gow R 2, 3. 1 Children s Hospital of Eastern Ontario Research Institute 2 Children s Hospital of Eastern Ontario 3 University of Ottawa, Faculty of Medicine, Department of Paediatrics plongmuir@cheo.on.ca, makenzieweekes@gmail.com, msampson@cheo.on.ca, bhavikap223@gmail.com, jham084@uottawa.ca, rgow@cheo.on.ca Correspondence: Dr. P. Longmuir, CHEO Research Institute, 401 Smyth Road, RI#1-214, Ottawa, Ontario, Canada K1H 8L1 Authors Contributions Longmuir review of abstracts and manuscripts, synthesis and interpretation of results, preparation of manuscript Weekes review of abstracts and manuscripts, synthesis of results, review of manuscript Sampson literature searches, interpretation of results, review of manuscript Patel - review of abstracts and manuscripts, review of manuscript Ham - review of abstracts and manuscripts, review of manuscript Gow diagnostic population expert, interpretation of results, review of manuscript Support This review was completed without external funding. INTRODUCTION Rationale Genetic cardiac conditions, such as hypertrophic cardiomyopathy, Long QT Syndrome, Catecholamine Induced Polymorphic Ventricular Tachycardia (CPVT), Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), or Wolff-Parkinson-White Syndrome, predispose individuals to potentially fatal arrhythmias. Individuals with these inherited conditions are often undiagnosed until adolescence, when episodes of syncope or cardiac arrest typically begin to occur. Based on their new diagnosis, these individuals must suddenly cope with a lifethreatening illness. Given that the onset of these conditions is typically during adolescence, a developmental period often characterized by mental health challenges, it is not surprising that the electrophysiology-specialist cardiologists who care for these patients suggest that, upon diagnosis, many of these adolescents become psychosocially distressed and/or begin to exhibit Revised / 1

2 behavioral problems. Such adjustments would be expected to have a significant impact on mental health. While little is known about what triggers the initial arrhythmic episode for these inherited conditions, coroner reports indicate that 24% of fatalities due to inherited arrhythmia syndromes among youth 10 to 18 years of age are associated with exercise participation1. Therefore, current treatment recommendations for individuals diagnosed with a genetic cardiac condition include significant restriction of their physical activity2. International guidelines for the physical activity participation of individuals with arrhythmias recommend physical activity limitations designed to maintain the heart rate at 150 beats per minute or less3, 4. The required restriction of physical activity may also have a negative impact on the individual s mental health. If they are required to eliminate or restrict their participation in the physical activities that they have previously enjoyed, it may lead to a loss of the ability to self-identify as an athlete. A physically active lifestyle is associated with lower anxiety symptoms, lower depression symptoms and a higher physical perception of self5. Physical activity is also an effective coping mechanism for dealing with situations of stress or feelings of distress. The sudden onset of a life-threatening condition would be expected to increase the risk for mental health disorders, such as anxiety, depression and lower self-efficacy6-8. It has been suggested that the onset of disease during adolescence can have a negative impact on typical developmental tasks, such as self-esteem, autonomy and future goal orientation9. The required restriction of physical activity participation removes a potential coping mechanism, and may exacerbate issues of self-efficacy in previously athletic adolescents. It has been suggested that younger patients who receive an ICD have a greater risk for adverse psychological outcomes because of the many more years that they will be required to cope with the device8, although a recent review concluded that the evidence remains mixed10. There is little empirical evidence describing the mental health of adolescents following the diagnosis of a life-threatening cardiac arrhythmia. The purpose of this systematic review was to summarize the current state of knowledge regarding the mental health of adolescents after the diagnosis of a life-threatening cardiac arrhythmia. Specifically, we sought to identify the type of mental health distress, the prevalence of mental health problems in this population, and evidence for effective methods to identify and treat mental health disorders among adolescents and pre-adolescents with a heart rhythm disorder. Objectives The aim of this review is to evaluate and summarize current evidence related to the mental health and quality of life among children and adolescents, 6 to 19 years of age, diagnosed with an inherited arrhythmia condition. To this end, the proposed systematic review will answer the following questions: 1. When compared to age- and sex-matched peers without an inherited arrhythmia condition, what is the quality of life of adolescents living with an inherited arrhythmia diagnosis? 2. When compared to age- and sex-matched peers without an inherited arrhythmia condition, what is the mental health of adolescents living with an inherited arrhythmia diagnosis? Revised / 2

3 3. For the above questions, what clinical and study methodological characteristics explain the heterogeneity in results? METHODS Eligibility Criteria Study design: Cross-sectional or longitudinal, prospective or retrospective. Review articles, comments or case reports are excluded. Participants: Children/adolescents, 9 to 18 years or the mean age of study participants in this range, living with an inherited arrhythmia diagnosis Interventions: Description of patient status, study intervention not required Comparators: Healthy age- and sex-matched peers Outcomes: quality of life, health-related quality of life, emotional quality of life, physical quality of life, social quality of life, mental health, anxiety, depression, post-traumatic stress disorder Report characteristics: 1946 to 2015; all languages; published original research Information Sources Medline, PsycInfo and Embase databases Search Strategy MEDLINE EMBASE PsycINFO 1. exp arrhythmias, cardiac/ or 1. exp heart arrhythmia/ 1. exp "arrhythmias (heart)"/ arrhythmogenic right ventricular dysplasia/ or exp cardiomyopathy, hypertrophic/ 2. exp arrhythmias, cardiac/ 2. exp long QT syndrome/ 2. long QT syndrome*.tw. 3. Arrhythmogenic Right Ventricular Dysplasia/ 4. exp Cardiomyopathy, Hypertrophic/ 5. (Catecholamine Induced Polymorphic Ventricular Tachycardia or CPVT).tw. 6. (Arrhythmogenic Right Ventricular Cardiomyopathy or ARVC).tw. 7. or/ or/ catecholaminergic polymorphic ventricular tachycardia/ 3. (tachycard* or CPVT).tw. 4. exp hypertrophic cardiomyopathy/ 4. (Cardiomyopath* or ARVC).tw. 5. heart right ventricle dysplasia/ 5. (Wolff adj2 Parkinson).tw. 6. Wolff Parkinson White syndrome/ 8. exp Behavioral Symptoms/ 8. psychological aspect/ 9. Stress, Psychological/ 9. exp Anxiety Disorder/ 10. exp "Behavior and Behavior mechanisms"/ 10. Anxiety/ 11. Mental Health/ 11. Mental Stress/ Revised / 3

4 12. Resilience, Psychological/ 12. exp Depression/ 13. exp Anxiety Disorders/ 13. exp Suicidal Behavior/ 14. exp Eating Disorders/ 14. automutilation/ 15. exp Substance-Related Disorders/ 15. exp impulse control disorder/ 16. exp Depressive Disorder/ 16. impulsiveness/ 17. exp Sleep Disorders/ 17. Oppositional Defiant Disorder/ 18. exp Somatoform Disorders/ 18. Antisocial Behavior/ 19. exp Self-injurious Behavior/ 19. exp eating disorder/ and substance abuse/ 24. (child: or adolescent).mp. 21. alcohol abuse/ and drinking behavior/ 6. or/ exp Addiction/ 7. limit 6 to (180 school age or exp sleep disorder/ adolescence ) 8. 6 and (child* or adolesc*).mp. 25. exp somatoform disorder/ 9. 7 or exp "Quality of Life"/ 27. or/ and limit 28 to (school child <7 to 12 years> or adolescent <13 to 17 years>) 30. limit 29 to embase Study Records Data management: Reference Manager 11 databases Selection process: Two authors will independently screen titles and abstracts and determine eligibility of full manuscripts Data collection process: Data extraction done independently by two authors Data Items Age: Individual participants between 8.0 and years of age or mean study population age within that range Revised / 4

5 Cardiac Diagnoses: Long QT Syndrome, Catecholamine Induced Polymorphic Ventricular Tachycardia (CPVT), Hypertrophic Cardiomyopathy, Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), Wolff-Parkinson-White Syndrome or Inherited arrhythmia Mental Health Diagnoses: Psychological problems classified as being of environmental origin: internalized and externalized behaviour, psychological limitations, stress, depression and suicidal tendencies, impulse control disorders, oppositional defiant disorders, eating disorders, substance abuse disorders, environmentally-derived sleep disorders, somatoform disorders, etcetera Exclusions: Psychological problems not of genetic origin. Learning disabilities, developmental disorders, psychotic disorders, bipolar disorder, personality disorders or any psychological sequelae of drugs used to treat arrhythmia or other conditions not resulting from the arrhythmia diagnosis were excluded. Outcomes and Prioritization Quality of Life Primary Outcomes: quality of life, emotional/psychological quality of life Secondary Outcomes: physical / social / health-related quality of life Mental Health Primary Outcomes: anxiety, depression, internalizing disorders Secondary Outcomes: post-traumatic stress disorder, externalizing disorders, behaviour problems Risk of Bias in Individual Studies Assessed at study level and outcome level. The Newcastle-Ottawa Scale will be used to assess the quality of non-randomized studies, including case-control and cohort studies. Studies will be synthesized based on level of risk for bias Data Synthesis Summary of studies addressing quality of life Summary of studies addressing mental health Strength of study design, population of study, quantitative/qualitative methods Revised / 5

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