General Anxiety, Depression, and Physical Health in Relation to Symptoms of Heart-focused Anxiety

A Cross Sectional Study Among Patients Living With the Risk of Serious Arrhythmias and Sudden Cardiac Death

Anniken Hamang; Geir E Eide; Berit Rokne; Karin Nordin; Nina Øyen


Health and Quality of Life Outcomes. 2011;9(100) 

In This Article

Abstract and Introduction


Objective: To investigate the role of three distinct symptoms of heart-focused anxiety (cardio-protective avoidance, heart-focused attention, and fear about heart sensations) in relation to general anxiety, depression and physical health in patients referred to specialized cardio-genetics outpatient clinics in Norway for genetic investigation and counseling.
Methods: Participants were 126 patients (mean age 45 years, 53.5% women). All patients were at higher risk than the average person for serious arrhythmias and sudden cardiac death (SCD) because of a personal or a family history of an inherited cardiac disorder (familial long QT syndrome or hypertrophic cardiomyopathy). Patients filled in, Hospital Anxiety and Depression Scale, Short-Form 36 Health Survey, and Cardiac Anxiety Questionnaire, two weeks before the scheduled counseling session.
Results: The patients experienced higher levels of general anxiety than expected in the general population (mean difference 1.1 (p < 0.01)). Hierarchical regression analyses showed that avoidance and fear was independently related to general anxiety, depression, and physical health beyond relevant demographic covariates (age, gender, having children) and clinical variables (clinical diagnosis, and a recent SCD in the family). In addition to heart-focused anxiety, having a clinical diagnosis was of importance for physical health, whereas a recent SCD in the family was independently related to general anxiety and depression, regardless of disease status.
Conclusion: Avoidance and fear may be potentially modifiable symptoms. Because these distinct symptoms may have important roles in determining general anxiety, depression and physical health in at-risk individuals of inherited cardiac disorders, the present findings may have implications for the further development of genetic counseling for this patient group.


Long QT syndrome (LQTS) and hypertrophic cardiomyopathy (HCM) are cardiac disorders that can cause syncope, palpitations, serious arrhythmias and sudden cardiac death (SCD).[1–3] This health threat may cause fearful reactions to cardiac-related stimuli and sensations in patients with familial LQTS and familial HCM.

It is likely that this health threat influence not only individuals that are diagnosed with LQTS or HCM, but also their relatives at risk. Familial LQTS and familial HCM are genetic disorders caused by gene mutations inherited in an autosomal dominant fashion. Children, siblings, and parents of affected patients have 50% risk of having the same gene mutation predisposing for LQTS or HCM. The possibility for molecular genetics investigation in affected individuals (patients with a diagnosis) and their relatives (patients at genetic risk) represents a challenge in the genetic counseling session with respect to information, education, and especially psychosocial support, due to the lack of systematic knowledge of how these patients are affected by living with familial LQTS or familial HCM.

While HCM is a quite common genetic disease affecting one in 500 people,[4] LQTS affects approximately one in 2500.[1] LQTS is an ion channel disease leading to a prolonged QT interval with an increased propensity to ventricular tachycardia manifesting as torsade de pointes.[5,6] HCM is defined by the presence of increased ventricular wall thickness or mass, having ruled out hypertension or a valve disease.[2] In addition to the risk of arrhythmia and syncope, HCM can give dyspnoea, chest pain, and exertional angina[7]

The cardiac symptoms manifesting in these patients can lead to proper management of the disease and preventive measures, such as medication (beta blockers for LQTS), devices (implantable cardioverter defibrillators for LQTS and HCM), and lifestyle modifications (restrictions of intense sports for LQTS and HCM).[8] Because of the reduced penetrance and variable expression of these diseases, a substantial proportion of the individuals will never actually experience manifested disease.[9,10] The management of these disorders is therefore complicated for the caregivers, creating a lot of uncertainty and distress when interpreting signs and symptoms for the individuals at risk.[11,12] In addition, information of being at risk of a possible life-threatening cardiac disorder and experiencing sudden cardiac death in the family may create a burdensome life uncertainty.[13]

Research based on patient-reported outcomes in at-risk individuals with familial LQTS or familial HCM is scarce and more is needed in order to understand the impact of living with the risk of serious arrhythmias and sudden cardiac death, also to identify possibilities for intervention. In previous reports, the elevated anxiety and distress levels among individuals with familial LQTS have been measured in parents in relation to genetic test results of their children.[14,15] In adult HCM patients, living with HCM has been reported to be associated with raised levels of anxiety and depression and decreased levels of physical and mental health as compared to the general population,[16] while mutation carriers at risk have been found to be no different than the general population. However, experiencing symptoms and having a higher perceived risk of symptoms have been reported to contribute to poorer physical and mental health in HCM mutation carriers.[11]

Given the potential serious consequences of both cardiac disorders, heart-focused anxiety may occur in the patients attending genetic counseling. Heart-focused anxiety, defined as a fear of cardiac-related events and sensations based on presumed harmful consequences (i.e. serious arrhythmia, sudden cardiac death) can be measured by the Cardiac Anxiety Questionnaire (CAQ).[17] Symptoms indicative of heart-focused anxiety is cardio- protective avoidance behavior to minimize cardiac symptoms or complications, increased levels of heart-focused attention and monitoring of cardiac related stimuli, and fear and worries about heart-sensations and functioning. Higher degrees of these symptoms indicate higher degrees of heart-focused anxiety.[17–19] Such fearful symptoms may contribute in raising levels of general anxiety and depression, and influence patient-reported physical health beyond the effects of relevant socio-demographic and clinical variables previously shown to be common confounders of these patient-reported outcomes.[11,12,14–16] In earlier studies, high levels of heart-focused anxiety have been reported in patients with a heart-disease, but also in patients without a heart-disease,[18–21] chest pain intensity has been predicted by heart-focused attention and fear in patients with coronary disease,[22] and in patients undergoing cardiac surgery, heart-focused anxiety has been shown to be significantly correlated with increased symptoms of anxiety and depression and lower health-related quality of life.[20] In the present population heart-focused anxiety have been found to be higher in patients with a clinical diagnosis of LQTS or a clinical diagnosis of HCM as compared to patients at genetic risk.[23] However, to our knowledge, the role of the distinct symptoms of heart-focused anxiety (avoidance, attention and fear) in relation to general anxiety, depression and physical health has never been investigated in individuals with familial LQTS or familial HCM, thus making this our overall aim. On the issue of how to increase our competence on the LQTS or HCM patients who seek genetic counseling and to address our overall aim, we therefore investigated (i) these patients' level of general anxiety, depression and physical health and compared the scores to expected scores of the general population, (ii) the scores of general anxiety, depression, physical health, and heart-focused anxiety (avoidance, attention, fear) in patients referred because of familial LQTS as compared to the scores of patients referred because of familial HCM, and (iii) the role of avoidance, attention, and fear symptoms in relation to general anxiety, depression, and physical health in the total sample.

It was hypothesized that the patients general anxiety and depression scores would be elevated and that physical health would be poorer compared to the expected scores of the general population, and further that the levels of general anxiety and depression and heart-focused anxiety (avoidance, attention, fear) would be lower, and that the physical health would be better in patients referred for familial LQTS as compared to familial HCM, since HCM patients often exhibit more debilitating symptoms. Finally, it was hypothesized that higher scores of avoidance, attention and fear symptoms would significantly and uniquely be related to (1) higher level of general anxiety, (2) higher level of depression, and (3) poorer physical health. In all models it was expected that the three distinct symptoms of heart-focused anxiety would be significant beyond demographic covariates (gender, age, having children) and clinical variables (clinical diagnosis of either LQTS or HCM, and a recent SCD in the family).


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