Anxiety and Depression in Cardiac Inherited Disease: Prevalence and Association With Clinical and Psychosocial Factors Research Article Anxiety and Depression in Cardiac Inherited Disease: Prevalence and Association With Clinical and Psychosocial Factors Claire E. O’Donovan a, Jonathan R. Skinner bc, Elizabeth Broadbent a [a] Department of Psychological Medicine, University of Auckland, Auckland, New Zealand. [b] Green Lane Paediatric and Congenital Cardiac Services, Starship Children’s Hospital, Auckland, New Zealand. [c] Department of Paediatrics Child and Youth Health, University of Auckland, Auckland, New Zealand. Clinical Psychology in Europe, 2019, Vol. 1(4), Article e38062, https://doi.org/10.32872/cpe.v1i4.38062 Received: 2019-07-08 • Accepted: 2019-10-28 • Published (VoR): 2019-12-17 Handling Editor: Winfried Rief, Philipps-University of Marburg, Marburg, Germany Corresponding Author: Elizabeth Broadbent, Department of Psychological Medicine, University of Auckland, Private Bag 92019, Auckland 1142, New Zealand. E-mail: e.broadbent@auckland.ac.nz Abstract Background: The small number of published studies indicate increased rates of anxiety and depression among patients with cardiac inherited diseases (CID). This study aimed to assess the prevalence of anxiety and depression in a New Zealand CID cohort and seek any associations with clinical and psychosocial factors. Method: Patients on a national CID register were sent a survey; 202 of 563 contactable patients participated (36% response rate). Ages ranged from 16 to 83 years (median 53). Most had Long QT Syndrome (43%) or Hypertrophic Cardiomyopathy (34%). Questionnaires collected demographic and psychological variables, including anxiety (GAD-7), depression (PHQ-9), illness perceptions, perceived risk and social support. The registry supplied clinical and genetic characteristics. Results: 80 participants (42%) reported features of anxiety and/or depression. 24 (13%) reached clinical levels of depression, a greater proportion than that found in the general population. Poorer perceived social support was associated with worse anxiety (p < .001) and depression (p < .001) scores. Reporting more physical symptoms (p = .001) (commonly not caused by the CID) was associated with poorer depression scores and greater perceived consequences of the CID was associated with greater anxiety scores (p < .05). Neither anxiety nor depression were associated with time since diagnosis, disease severity or type of disease. Conclusion: Forty percent of the CID population live with some degree of psychopathology but this did not correlate with disease severity, type of disease nor time since diagnosis. Correlating factors which may be modifiable include illness perceptions, various physical symptoms and social support. This is an open access article distributed under the terms of the Creative Commons Attribution 4.0 International License, CC BY 4.0, which permits unrestricted use, distribution, and reproduction, provided the original work is properly cited. https://crossmark.crossref.org/dialog/?doi=10.32872/cpe.v1i4.38062&domain=pdf&date_stamp=2019-12-17 https://cpe.psychopen.eu/ https://www.psychopen.eu/ https://creativecommons.org/licenses/by/4.0/ https://creativecommons.org/licenses/by/4.0/ https://creativecommons.org/licenses/by/4.0/ Keywords generalized anxiety, depression, cardiac inherited diseases, long QT syndrome, hypertrophic cardiomyopathy, health psychology Highlights • Rates of clinical levels of anxiety and depression in this CID sample were 10% and 13% respectively. • Anxiety and depression were not associated with disease type, severity or time since diagnosis. • Perceived lack of support, consequences, and symptoms were associated with depression and anxiety. • High rates of anxiety and depression in CID’s indicate the need for access to psychological support. Cardiac inherited diseases are a group of genetic heart conditions that account for many sudden cardiac deaths in individuals aged 1 to 35 years (Bagnall et al., 2016). These condi‐ tions generally fall into two categories, channelopathies, which affect the electrical pro‐ cesses of the heart, e.g. Long QT Syndrome (LQTS); and cardiomyopathies which cause the heart muscle to become dysfunctional and electrically unstable e.g. Hypertrophic Cardiomyopathy (HCM). The last decade has seen a dramatic rise in the detection of peo‐ ple with cardiac inherited diseases, which is the result of effective international efforts to reduce sudden deaths in young people (Bagnall et al., 2016; Behr et al., 2008; Hofman et al., 2013). However the psychological impact of such detection has been under researched and is only just starting to be explored. The few studies performed to date suggest these individuals are particularly vulnerable to anxiety and depression, with prevalence rates found to be as high as 38% and 21% respectively (Ingles, Sarina, Kasparian, & Semsarian, 2013; Morgan, O'Donoghue, McKenna, & Schmidt, 2008; Richardson et al., 2018). These rates are considerably higher than the prevalence of anxiety (6 – 9%) and depressive dis‐ orders (5 - 8%) in general populations (Alonso et al., 2004; Kessler, Chiu, Demler, & Walters, 2005; Wells et al., 2006). However, the rates are in line with clinical levels of anxiety (20-25%) and depression (20-40%) in other cardiac populations (Celano & Huffman, 2011; Moser, 2007). Cardiac inherited disease patients have shed some light on why this may be in two qualitative studies (Andersen, Øyen, Bjorvatn, & Gjengedal, 2008; Subasic, 2013). Patients report that they struggle with the uncertainty of the trajectory of their disease; their in‐ creased risk of sudden cardiac arrest; and identifying whether their symptoms are normal or sinister. Patients report a physical burden associated with living with these conditions, including symptoms such as extreme fatigue, palpitations and headaches, and side effects from treatment, which can in some instances get in the way of fulfilling roles at home and/or work or engaging with their social network. Anxiety and Depression in CID 2 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ Greater clinical severity and uncertainty of risk may therefore be associated with psy‐ chological outcomes. However, research on other hereditary heart diseases has found that disease severity is not the only predictor of psychological well-being (O’Donovan, Painter, Lowe, Robinson, & Broadbent, 2016). Physical symptoms (including those unrela‐ ted to the heart condition) and illness perceptions also contribute to psychological well- being. It is well accepted that anxiety and depression have a negative influence on patient engagement and clinical outcomes (Andrássy et al., 2007; DiMatteo, Lepper, & Croghan, 2000; Ziegelstein et al., 2000). Disengagement is particularly unhelpful with cardiac in‐ herited disease because it could impede the detection and management of the heart con‐ dition in other family members, and nonadherence can be life-threatening. Therefore it is imperative to gain a better understanding of the psychological impact of these condi‐ tions. The aim of this study was to assess rates of anxiety and depression in the New Zea‐ land cardiac inherited disease population and determine which clinical, demographic and psychological factors were associated with anxiety and depression. This study intention‐ ally focused on factors that may be amenable to amelioration, including illness percep‐ tions and social support, as these factors might help to inform the delivery of psychologi‐ cal interventions for this group (Broadbent, Ellis, Thomas, Gamble, & Petrie, 2009). M e t h o d s Study Design and Study Population The New Zealand Cardiac Inherited Diseases Register was used to recruit participants (Earle et al., 2019). Eligible patients had a ‘definitely’ or ‘probably’ affected clinical status and a genetic status of ‘positive’, ‘uninformative testing’ or ‘unclassified variant’. Over 15 years of age and proficiency in English were also required. Multi-regional ethical appro‐ val was given 9th December 2016 (HDEC Ethics Ref: 16/STH/200) There were 618 individuals who were identified as eligible; invitations were sent to them in May 2017. However, 55 of these eligible patients were non-contactable due to out of date contact details. A total of 202/563 contacted individuals returned questionnaires within three months (36% response rate); 361 patients did not participate - ‘non-partici‐ pants’. Demographic information for participants is shown in Table 1. The questionnaire collected data on anxiety and depression and a number of other psychological and clini‐ cal variables, as follows. O’Donovan, Skinner, & Broadbent 3 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ Table 1 Demographic and Clinical Variables of Cardiac Inherited Disease Participants Characteristic n (%) Demographic Characteristics Age: Range (median) 16 - 83 (53) Sex: Female 103 (54.2) Ethnicity NZ European 151 (74.8) Māori & Pacific 21 (10.4) Māori 19 (9.4) Samoan 0 (0) Cook Island Maori 1 (0.5) Tongan 1 (0.5) Other 16 (7.9) Chinese 3 (1.5) Indian 4 (2.1) Other 9 (4.5) Clinical Characteristics Inherited cardiac condition Long QT Syndrome 86 (42.6) Hypertrophic Cardiomyopathy 69 (34.2) Dilated Cardiomyopathy 12 (5.9) Brugada 6 (3.0) Other 21 (8.5) ARVC 5 (2.5) CPVT 6 (3.0) Sudden Cardiac Arrest Syndrome 3 (1.5) Progressive Cardiac Conduction disorder 3 (1.5) Diagnosis missing 12 (5.8) Clinic Status Definitely affected 145 (71.8) Probably affected 42 (21.8) Genetic Status Positive 110 (54.5) Testing uninformative 57 (28.2) Unclassified variant 20 (9.9) Anxiety and Depression in CID 4 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ Characteristic n (%) Proband True 121 (59.9) False 66 (32.7) β-Blocker use 131 (64.9) Number of years since diagnosis: Range (median) 0 – 51 (9) Note. Participants n = 202. Measures Depression was assessed using the Patient Health Questionnaire – 9 (PHQ-9) (Kroenke, Spitzer, & Williams, 2001). This tool has 9 items that measure how often, in the last two weeks, symptoms of depression have occurred. Responses are recorded on a 4-point scale from 0 – “not at all” to 3 – “nearly every day”. The PHQ-9 has been validated against clinical interviews with the following cut-off scores, 5 – 9 ‘mild cases’; 10 – 14 ‘moderate cases’; 15 – 19 ‘moderately severe cases’; and ≥20 ‘severe cases’ (Kroenke et al., 2001). Anxiety was measured using the Generalized Anxiety Disorder – 7 (GAD-7) (Spitzer, Kroenke, Williams, & Löwe, 2006). This assessment tool has 7 items and follows the same structure as the PHQ-9 asking how often symptoms of anxiety have occurred. The GAD-7 has been validated against clinical interviews and the following cut-off scores were established, 5 – 9 ‘mild cases’; 10 – 14 ‘moderate cases’; 15 – 21 ‘severe cases’ (Spitzer et al., 2006). The Brief Illness Perception Questionnaire (Brief IPQ) (Broadbent, Petrie, Main, & Weinman, 2006) assesses an individual’s cognitive and emotional representations of their illness. It contains eight items, with a 0 – 10 response format; assessing people’s experi‐ ence of symptoms (identity); perceptions of personal and treatment control; perceived timeline for the illness, the consequences it has on their life; how concerned they are about it; how much they understand the illness (coherence) and how much it affects them emo‐ tionally (emotional representation). The ninth item measures perceptions around cause and was not used in the analysis of this study. Perceptions of risk were measured using questions based on Bjorvatn and colleagues’ (2007) risk questions. One item was used in the analysis, which asked participants to re‐ port their perceived chance (0-100%) of experiencing severe symptoms (e.g. cardiac ar‐ rest, sudden cardiac death). The Problem List is an assessment tool used to identify sources of distress in oncolo‐ gy patients (Holland & Bultz, 2007). Minor changes were made to the problem list for this study so items were specific to this cardiac population. For example, mouth sores were removed and palpitations were added. It includes practical problems with ‘changes to fi‐ nances’, ‘work or school’ and taking medication; family problems with ‘communicating with extended family’, ‘fulfilling roles within the family’ and ‘planning to have children’; emotional problems such as ‘distress’, ‘isolated/feeling alone’ and ‘worried’; physical O’Donovan, Skinner, & Broadbent 5 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ problems such as ‘blackouts/faints’, ‘breathing’ ‘cold hands and feet’, and ‘fatigue/tired‐ ness’; and spiritual/religious concerns such as ‘loss of purpose’ and ‘why me?’. Each item was either scored zero if not identified as a problem or 1 if it was identified as a problem. Subtotals for each subscale, and an overall total were then created by the number of problems selected. This tool is a practical way for patients to highlight aspects of their life contributing to their distress levels, so support provisions can be put in place. The STOP-D is a five item screener used commonly in cardiac populations (Young, Ignaszewski, Fofonoff, & Kaan, 2007; Young, Nguyen, Roth, Broadberry, & Mackay, 2015). The five items measure depression, anxiety, stress, anger and social support, participants are asked how much they have been bothered by each item over the last two weeks on a 10-point scale 0 – ‘Not at all’ to 9 – ‘severely’. In this instance the whole measure was not used; we utilized the social support single item which asked how much participants had been bothered by: ‘Not having the social support you feel you need?’ Clinical information was extracted from the registry including the type of diagnosis, clinical status (level of certainty of their diagnosis, i.e. definitely affected vs probably af‐ fected), genetic status (genotype positive, unclassified variant or uninformative genetic test) and proband status (proband or cascade family member). Participants responded to clinical questions in the questionnaire including, how long since their diagnosis, whether they had been prescribed β-blockers, how many of their family members had a cardiac inherited disease diagnosis and whether any family mem‐ bers had died from the condition. Participants also completed demographic questions in‐ cluding age, gender, ethnicity and employment status. Statistical Analysis Missing data were left out of analysis on a case by case basis. Of the 202 participants, 20 had either missing ethnicity and beta-blocker data, clinical, genetic or proband status or did not indicate whether a death had occurred within their family. In total, 17 partici‐ pants had missing data for anxiety scores, three participants could have scores imputed as no more than two items were missing. In these cases the mean of the completed five items was used as a replacement for the missing items, leaving 14 participants without an anxiety score. In total 28 were missing for depression, 15 participants had scores imputed as no more than three items were missing, again the mean of the remaining items was used as a replacement, leaving 13 participants without a depression score. Of these par‐ ticipants with missing data, 10 did not complete both measures. Analyses were conducted on SPSS version 24 software. Non-parametric tests were used due to non-normally dis‐ tributed data and medians were used when reporting findings. Spearman correlations were conducted to determine associations between psychological variables and age, anxi‐ ety and depression. Mann-Whitney tests were performed to assess differences in anxiety and depression between those taking and not taking β-blockers, probands versus family members, and those with a definite versus probable clinical status. Comparisons were al‐ Anxiety and Depression in CID 6 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ so made using the Kruskal-Wallis test to assess whether anxiety and depression differed between genetic status and a death in the family status. Hierarchical multiple regression analysis was performed using the significant variables from the above tests along with age and gender given they are consistently associated with anxiety and depression (Baxter, Scott, Vos, & Whiteford, 2013; Stordal, Mykletun, & Dahl, 2003). A total of 160 cases were included in the anxiety regression and 158 for the depression regression. A significance level of .05 was maintained apart from when post-hoc tests were performed during which a Bonferroni correction was made. R e s u l t s Participants did not differ from non-participants on gender, genetic, proband and clinical status and type of condition; but they did differ based on age (p < .001) and ethnicity (p < .001). Those who participated were significantly older (median 53 years) compared to those who did not (median 45 years) and New Zealand Europeans were over represented in the study compared to other ethnicities (see Table 1). Means and standard deviations for all the psychological variables are reported in Ta‐ ble 2. Table 2 Means and Standard Deviations of the Psychological Variables Psychological Variable M SD Anxiety 3.37 4.28 Depression 4.62 4.60 Perceived Social Support 0.87 1.62 Perceived Risk 32.28 30.50 IP Consequence 3.73 2.96 IP Timeline 9.60 1.55 IP Personal Control 4.30 3.27 IP Treatment Control 4.59 3.35 IP Identity 2.92 2.76 IP Concern 4.50 3.23 IP Coherence 7.17 2.54 IP Emotional Representation 3.30 3.12 Problem List – Practical 1.91 2.60 Problem List - Family 0.69 1.09 Problem List – Emotional 1.62 2.61 Problem List – Physical 2.26 2.35 Problem List - Spiritual 0.21 0.52 O’Donovan, Skinner, & Broadbent 7 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ Depression and anxiety scores ranged from 0 to 21 and 0 to 19 respectively. There were 27/192 (14%) individuals reporting clinical levels of anxiety and/or depression. Of these individuals 16 (8%) reported clinical levels of both, 4 (2%) just depression, and 7 (4%) clinical levels of one and mild levels of the other. There were, 53/192 (28%) individuals who reported subclinical (mild) levels of anxiety and/or depression. Of these individuals 23 (12%) reported subclinical levels of both, 22 (12%) just mild depression and 8 (4%) just mild anxiety. Accordingly, 112/192 (58%) participants fell in the ‘non-clinical range. Table 3 displays the proportion of people with at least mild levels of anxiety and depression by type of condition. There was no significant difference in anxiety and depression levels between the two most common conditions LQTS and HCM, χ2(1, N = 146) = 3.87, p = .273. Levels of anxiety and depression did not differ significantly based on gender or age (Table 3). Table 3 The Proportion of Participants With at Least Mild Anxiety And/Or Depression by the Type of CID Condition Condition n (%) Anxiety only Depression only Anxiety & Depression Total Long QT Syndrome 6 (7) 7 (8) 23 (27) 36 (42) HCM 1 (1) 12 (17) 16 (23) 29 (42) DCM 0 (0) 2 (17) 1 (8) 3 (25) ARVC 0 (0) 1 (20) 1 (20) 2 (40) CPVT 0 (0) 0 (0) 1 (17) 1 (17) Brugada 1 (17) 1 (17) 0 (0) 2 (33) Sudden Cardiac Arrest Syndrome 0 (0) 1 (33) 1 (33) 2 (67) Missing Diagnosis 0 (0) 1 (8) 3 (25) 4 (33) Totals 7 (4) 26 (13) 46 (24) 79 (41) Anxiety Bivariate analyses (Table 4) showed that ethnicity was the only demographic variable as‐ sociated with anxiety U = 1919.5, z = -2.28, p < .05. A smaller proportion of New Zealand European participants (7.5%) scored above the clinical threshold for anxiety compared to non-New Zealand European participants (17%). A Kruskal-Wallis test on ‘death of a fami‐ ly member due to a cardiac inherited disease’ was found to be significantly related to anxiety H(2) = 6.31, p < .05; however Mann Whitney post hoc tests using a Bonferroni correction did not reach significance between the groups (‘yes’, ‘no’, or ‘I don’t know’). Participants on beta-blockers had significantly greater clinical anxiety U = 2952, z = -2.93, p < .01, compared to participants not on beta-blockers (14% vs 3% respectively). Clinical, genetic and proband status and channelopathy versus cardiomyopathy were not related Anxiety and Depression in CID 8 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ to anxiety. There was also no significant correlation between anxiety and time since di‐ agnosis. Table 4 Bivariate Analyses (Pearson Correlations, Mann-Whitney and Kruskal-Wallis Tests) of the Relationship Between Psychological, Clinical and Demographic Variables With Scores on the Anxiety and Depression Scales PHQ-9 - Depression GAD-7 - Anxiety Spearman Correlations rs p rs p Age -.03 .677 -.13 .079 Time since diagnosis .01 .939 -.09 .230 Percentage of life with diagnosis .00 .963 -.04 .574 Problem List – Total .69 < .001 .66 < .001 Problem List – Physical .55 < .001 .44 < .001 Problem List – Emotional .62 < .001 .71 < .001 Problem List – Practical .50 < .001 .53 < .001 BIPQ – Consequence .54 < .001 .53 < .001 BIPQ –Timeline .01 .874 .00 .968 BIPQ – Personal Control -.21 .004 -.17 .019 BIPQ – Treatment control -.02 .832 -.08 .317 BIPQ – Identity .52 < .001 .40 < .001 BIPQ – Concern .45 < .001 .53 < .001 BIPQ – Understand .01 .892 -.07 .352 BIPQ – Emotional Representation .51 < .001 .62 < .001 Perceived Social Support .39 < .001 .48 < .001 Risk Perceptions for severe symptoms (%) .38 < .001 .40 < .001 Mann Whitney Tests U (z) p U (z) p Beta-blockers (prescribed) 3179 (-2.32) .02 2952 (-2.93) .003 Parent (not being a) 2585.5 (-1.61) .107 2428.5 (-1.95) .051 Gender 3709.5 (-1.04) .297 3850.5 (-0.53) .596 Cardiomyopathy vs Channelopathy 3923.5 (-0.47) .637 3839.5 (-0.58) .563 Proband (true) 2885 (-2.34) .019 3095.5 (-1.72) .085 Clinical 2749 (-0.35) .730 2372.5 (-1.44) .150 Ethnicity (Non-European) 1935 (-2.58) .010 1919.5 (-2.28) .022 Kruskal Wallis Tests H(2) p H(2) p Genetic Status 0.53 .777 0.09 .958 Death of a family member (Don’t know vs No) 9.42 .007 6.31 .043 Note. z = z score. The psychological variables associated with anxiety in the bivariate analyses (Table 4) in‐ cluded the number of physical and practical problems reported, illness perceptions (con‐ sequences; personal control; identity, concern, and emotional representation), percep‐ tions of risk and social support. O’Donovan, Skinner, & Broadbent 9 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ Hierarchical multiple regression analysis (Table 5) was conducted and significant var‐ iables from the bivariate analyses and age and gender were entered into the model to predict anxiety. Table 5 Regression Analysis to Investigate Predictors of Anxiety in Individuals With a Cardiac Inherited Disease Steps B SE B β 95% CI for B LL UL Step 1 (Constant) 5.68 1.98 1.78 9.59 Age -0.04 0.02 -.18* -0.08 -0.01 Gender 0.31 0.64 .04 -0.95 1.57 Ethnicity (European vs non-European) 0.90 0.80 .09 -0.68 2.47 Prescribed Beta-blockers -1.85 0.67 -.21** -3.18 -0.52 Deaths within the Family - Yes 0.79 0.70 .10 -0.59 2.18 Deaths within the Family – Don’t Know 0.69 0.90 .07 -1.09 2.47 Step 2 (Constant) 3.18 1.75 -.28 6.64 Age -0.03 .02 -.10 -0.06 0.01 Gender 0.05 0.52 .01 -0.97 1.07 Ethnicity (European vs non-European) 0.08 0.69 .01 -1.29 1.46 Prescribed Beta-blockers -1.01 0.56 -.12 -2.12 0.11 Deaths within the Family - Yes -0.89 0.61 -.11 -2.09 0.31 Deaths within the Family – Don’t Know -0.68 0.74 -.06 -2.16 0.79 PL - Physical symptoms 0.32 0.17 .17 -0.01 0.65 PL – Practical problems 0.16 0.15 .10 -0.14 0.46 IP – Personal Control -0.08 0.08 -.07 -0.23 0.08 IP – Consequence 0.33 0.14 .24* 0.05 0.61 IP – Identity -0.11 0.15 -.08 -0.39 0.18 IP – Concern 0.15 0.11 .12 -0.08 0.37 Risk Perception – Severe symptoms -0.00 0.01 -.03 -0.03 0.02 Perceived Social Support 0.79 0.17 .34*** 0.47 1.12 Note. CI = confidence interval; LL = lower limit; UL = upper limit. *p < .05. **p < .01. ***p < .001. All significant Brief IPQ items were included in the regression except emotional repre‐ sentation due to its conceptual overlap with the outcome variable. Ethnicity, age, gender, beta-blocker and death of a family member variables were entered in Model 1, and ex‐ plained 9% of the variance in anxiety scores F(6, 153) = 2.65, p = .018. Being younger and prescribed beta-blockers (p = .007) were significant independent predictors in Model 1. Anxiety and Depression in CID 10 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ After entering physical (symptom reports) and practical problems, perceptions of person‐ al control, consequences, identity, concern, risk and social support at Model 2, the total variance explained by the model as a whole was 46% (R 2 = .46, adjusted R 2 = .41), F(14, 145) = 8.76, p < .001. The variables in Model 2 explained an additional 37% of the variance in anxiety, Fchange(8, 145) = 12.18, p < .001. In the final model higher perceptions of conse‐ quences (p = .021) and perceptions of poorer social support (p < .001) were significantly associated with greater anxiety. Depression Ethnicity was the only demographic variable related to depression U = 1935, z = -2.58, p < .05 (Table 4). Overall, more non-New Zealand European participants (16%) reported clinical levels of depression than New Zealand European participants (11%). Reports of whether a family member had died due to a cardiac inherited disease was significantly related to depression H(2) = 9.42, p < .01. Mann Whitney post hoc tests us‐ ing a Bonferroni correction showed a significant difference between those who had lost a family member and those who reported they had not (13% vs 11% respectively reported clinical levels of depression) U = 1963.5, p = .008; and between those who didn’t know if they had lost a family member and those who reported they had not (16% vs 11% respec‐ tively reported clinical levels of depression) U = 812.5, p = .014. Those participants prescribed beta-blockers had significantly greater depression scores than those not prescribed them U = 3179, z = -2.32, p < .05 (16% vs 6% respectively reported clinical levels of depression). Probands had significantly greater depression scores compared to family members U = 2885, z = -2.34, p < .05 (14% vs 8% respectively reported clinical levels of depression). Clinical and genetic status, channelopathy versus cardiomyopathy, and time since diagnosis were not significantly related to depression. The psychological variables associated with depression in the bivariate analysis (Ta‐ ble 4) mirrored the anxiety results. Depression scores were significantly related to the number of physical and practical problems participants reported, illness perceptions (consequences, personal control, identity, concern, and emotional representation), per‐ ceptions of risk and social support. A hierarchical multiple regression analysis (Table 6) was conducted using significant variables from the bivariate analysis (again, the emotional representation item from the Brief IPQ was left out due to its conceptual similarity with the outcome variable) and age and gender. Ethnicity, age, gender proband status, beta-blocker and death of a family member variables were entered in Model 1; they explained 12% of the variance in depres‐ sion scores F(7, 150) = 3.04, p = .005. A death in the family (p = .006) and being a proband (p = .035) were significant variables in Model 1. In Model 2, physical and practical prob‐ lems, perceptions of personal control, consequences, identity, concern, risk and social support were entered, and the total variance explained by the model as a whole was 50% (R 2 = .50, adjusted R 2 = . 45), F(15, 142) = 9.39, p < .001. The variables in Model 2 ex‐ O’Donovan, Skinner, & Broadbent 11 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ plained an additional 38% of the variance in depression, Fchange(8, 142) = 13.21, p < .001. In the final model greater reported physical problems (p < .001) and perceptions of poorer social support (p < .001) were significantly associated with greater depression scores. Table 6 Regression Analysis to Investigate Predictors of Depression in Individuals With a Cardiac Inherited Disease Steps B SE B β 95% CI for B LL UL Step 1 (Constant) 7.21 2.39 2.48 11.94 Age -0.03 0.02 -.12 -0.08 0.01 Gender 0.00 0.73 .00 -1.45 1.45 Ethnicity (European vs non-European) 1.43 0.89 .13 -0.34 3.19 Prescribed Beta-blockers -1.24 0.78 -.12 -2.78 0.29 Deaths within the Family - Yes 2.24 0.80 .24** 0.66 3.82 Deaths within the Family – Don’t Know 1.14 1.02 .09 -0.88 3.16 Proband Status -1.63 0.77 -.17* -3.15 -0.12 Step 2 (Constant) 4.04 2.13 -0.16 8.25 Age -0.02 0.02 -.08 -0.06 0.01 Gender -0.54 0.59 -.06 -1.71 0.62 Ethnicity (European vs non-European) 0.48 0.78 .04 -1.05 2.01 Prescribed Beta-blockers -0.35 0.63 -.04 -1.60 0.90 Deaths within the Family - Yes 0.42 0.68 .05 -0.92 1.76 Deaths within the Family – Don’t Know -0.33 0.83 -.03 -1.96 1.31 Proband Status -0.77 0.63 -.08 -2.01 0.47 PL - Physical symptoms 0.72 0.19 .35*** 0.35 1.10 PL – Practical problems 0.08 0.16 .04 -0.24 0.40 IP – Personal Control -0.07 0.09 -.05 -0.24 0.11 IP – Consequence 0.29 0.16 .18 -0.02 0.60 IP – Identity 0.06 0.16 .04 -0.26 0.38 IP – Concern -0.04 0.12 -.03 -0.29 0.20 Risk Perception – Severe symptoms 0.00 0.01 .02 -0.02 0.03 Perceived Social Support 0.75 0.18 .28*** 0.39 1.12 Note. CI = confidence interval; LL = lower limit; UL = upper limit. *p < .05. **p < .01. ***p < .001. D i s c u s s i o n This study found an increased prevalence of depression and anxiety in patients with a cardiac inherited disease, which supports findings from the small number of earlier stud‐ Anxiety and Depression in CID 12 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ ies with this patient population. Eighty (42%) participants had features of at least mild depression and/or anxiety. Time since diagnosis and milder clinical severity did not di‐ minish the likelihood of either anxiety or depression symptoms. The diagnostic levels of depression and anxiety (13% and 10% respectively) and subclinical levels of depression (24%) in this cardiac inherited disease population were found to be higher than that in general populations (Alonso et al., 2004; Kessler et al., 2005; Wells et al., 2006). Treating psychopathology is important not only for patients’ quality of life but evidence suggests even subclinical levels of depression and anxiety can be detrimental for engagement and health outcomes (Lewinsohn, Solomon, Seeley, & Zeiss, 2000; Roest, Martens, de Jonge, & Denollet, 2010) and can be risk factors for more severe future psychopathology (Cuijpers & Smit, 2004). This study found that perceptions of social support were associated with both anxiety and depression scores in the hierarchical regression models. Perceptions of social support are consistently associated with mental health and wellbeing across many different ill‐ ness groups including cardiac populations (Hughes et al., 2004; Thoits, 2011). The current study focused on perceived social support, a subjective feeling of being supported, as op‐ posed to received social support, the actual support provided. A perceived lack of support has been found to be a stronger predictor of greater depression than the actual support received, with studies showing a perceived sense of good social support plays a protec‐ tive role in the association between chronic illness and depression (Santini, Koyanagi, Tyrovolas, Mason, & Haro, 2015). Given these heart conditions are hereditary, multiple people within a family can be affected. It would be easy to assume there would be an inbuilt support network for pa‐ tients, and this is likely the case for the majority of study participants who reported hav‐ ing the social support they felt they needed. However this study suggests an important minority of patients feel they do not have the social support they feel they need and this group is doing poorer psychologically. Further research is needed to better understand perceptions of social support with this specific patient population. Janney (2011) provides some insight in a qualitative study in which LQTS patients reported a perceived lack of emotional support from their social networks due to a poor understanding of the condi‐ tion (i.e. the absence of visible symptoms). The number of physical symptoms individuals reported was significantly associated with depression. The association between physical symptoms and depression is also well documented across different conditions, (Katon, Lin, & Kroenke, 2007) and likely related to the limitations physical symptoms can cause. The items most commonly endorsed by participants in this study were fatigue, palpitations, insomnia, shortness of breath with exercise, and dizziness. These are common symptoms, many of which are reported in pri‐ mary care populations, and are highly correlated with anxiety and depression (Kroenke et al., 1994). It is therefore important to be aware that patient-reported symptoms may not always be related to their heart condition. Indeed, some of these symptoms would O’Donovan, Skinner, & Broadbent 13 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ not generally be caused by a channelopathy at all, and may in fact provide an indication that anxiety and/or depression is present. As the Common Sense Model of Illness (CSM) indicates (Leventhal, Meyer, & Nerenz, 1980), patients attempt to make sense of their symptoms, even mild ones, and may misat‐ tribute unrelated symptoms (or side effects from medication) to their cardiac condition which will affect the mental model the patient holds for their cardiac inherited disease. Although certain patient-reported symptoms may not be of direct clinical relevance to the medical management of the heart condition, it is important they get addressed. Further support for the Common Sense Model was provided by this study, in that ill‐ ness perceptions were strongly related to psychological distress. The consequence do‐ main was a significant individual contributor to the regression model for anxiety. This is in line with a meta-analysis that included different health conditions, which found the consequence domain consistently predicted the presence of anxiety (Broadbent et al., 2015). Other illness perceptions (personal control, identity and concern) and risk percep‐ tions were associated with anxiety and depression as well. Illness perceptions represent malleable aspects of a patient’s experience that could be targeted in an intervention (Broadbent et al., 2009). Longitudinal research is needed to better understand the rela‐ tionship between perceived social support and illness and risk perceptions and anxiety and depression over time. This study found that time since diagnosis (median 9 years) and disease severity were not associated with depression or anxiety. It is intuitive to think that the longer someone has a health condition the better they will become at integrating it into their life and cop‐ ing with its consequences (Morgan et al., 2008). However, studies of other cardiac condi‐ tions have shown similar findings (Pelletier et al., 2014), indicating even patients with mild disease can be vulnerable. This study also supports research that found the preva‐ lence of anxiety and depression does not differ between the two most common cardiac inherited diseases, long QT syndrome and hypertrophic cardiomyopathy (Hamang, Eide, Rokne, Nordin, & Øyen, 2011) which is worth investigating further, given the very differ‐ ent disease trajectories these conditions have. HCM is a progressive condition of heart muscle thickening and dysfunction and reminder symptoms such as shortness of breath on exertion are common in advanced disease. LQTS is non-progressive, and the only symptoms anticipated are syncope, or cardiac arrest. Further research may help to estab‐ lish which features in common are the most important (such as hereditability and risk of sudden death), as well as the dominant findings here which seem to be common to many diseases in general, such as the importance of a good social support infrastructure. Although cardiac inherited disease patients are likely to be vulnerable to distress ear‐ ly on (which research shows usually dissipates) (Hendriks et al., 2008), living with these conditions day to day may create an on-going vulnerability to anxiety and depression re‐ gardless of severity or how long someone has had the condition. The American Heart As‐ sociation and American College of Cardiology recommend that there is an integration of Anxiety and Depression in CID 14 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ psychological screening, assessment and intervention into cardiac care across the life span of patients with a congenital heart disease (Warnes et al., 2008). The existing re‐ search would suggest it is time to consider similar recommendations for cardiac inherited disease patients. Clinical Implications The fact that 14% of patients had clinical levels of psychopathology and 28% had subclini‐ cal levels regardless of clinical severity or time with the condition, suggests that psycho‐ logical support should be made available to this patient population. The finding that non- Europeans had higher psychological morbidity indicates that ethnic minorities, most no‐ tably Māori and Polynesian peoples in this study, will need specific attention. Limitations There are some limitations to this research. Although a 36% response rate is in accord‐ ance with postal and web based surveys (Shih & Fan, 2008), it means this sample may not be representative of the population as a whole. It is difficult to know whether anxiety and depression are therefore underrepresented or overrepresented in this study. When people are choosing to take part in a voluntary survey they balance the interest, value, and personal relevance of it with the cost in time, energy and resources required to com‐ plete it (Groves, Cialdini, & Couper, 1992). It is feasible that individuals suffering from anxiety and depression could come to a decision from either side of that equation. Com‐ pounding this issue of sample representativeness is the fact that younger and ethnic mi‐ norities were under-represented and the questionnaire was only provided in English, cre‐ ating a potential bias around English language proficiency. This is also cross-sectional data and no direction of relationship can be determined. Conclusion This study found anxiety and depression were more prevalent in the cardiac inherited disease population than in the general population and a perceived lack of social support was significantly associated with both. In addition the presence of more physical symp‐ toms (not necessarily specific to the heart condition) was associated with an increased risk of depression and more severe perceptions of the consequences of the heart condi‐ tion was associated with anxiety. The presence of a mild cardiac phenotype, and having had the condition for a long time do not appear to be protective of poor psychological wellbeing. Future research should investigate these associations in a longitudinal study to help inform psychological interventions with this patient population. O’Donovan, Skinner, & Broadbent 15 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ Funding: Dr. Skinner receives salary support from Cure Kids. Claire O’Donovan receives a PhD scholarship from the University of Auckland. Competing Interests: The authors declare no conflicts of interest. Acknowledgments: The authors have no support to report. Ethics Approval: This study was approved by the Health and Disability Ethics Committee New Zealand and local area health board: number: 16/STH/200. Data Availability: Data was collected with the ethics requirement that patients’ data is confidential and will not be shared. However any requests for de-identified data should be directed to the corresponding author. 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Archives of Internal Medicine, 160(12), 1818-1823. https://doi.org/10.1001/archinte.160.12.1818 O’Donovan, Skinner, & Broadbent 19 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://doi.org/10.1016/j.jacc.2010.03.034 https://doi.org/10.1016/j.jad.2014.12.049 https://doi.org/10.1177/1525822X08317085 https://doi.org/10.1001/archinte.166.10.1092 https://doi.org/10.1034/j.1600-0447.2003.02056.x https://doi.org/10.1111/jnu.12040 https://doi.org/10.1177/0022146510395592 https://doi.org/10.1016/j.jacc.2008.10.001 https://doi.org/10.1080/j.1440-1614.2006.01903.x https://doi.org/10.1097/01.JCN.0000297383.29250.14 https://doi.org/10.1177/1474515114548649 https://doi.org/10.1001/archinte.160.12.1818 https://www.psychopen.eu/ Clinical Psychology in Europe (CPE) is the official journal of the European Association of Clinical Psychology and Psychological Treatment (EACLIPT). PsychOpen GOLD is a publishing service by Leibniz Institute for Psychology Information (ZPID), Germany. Anxiety and Depression in CID 20 Clinical Psychology in Europe 2019, Vol.1(4), Article e38062 https://doi.org/10.32872/cpe.v1i4.38062 https://www.psychopen.eu/ Anxiety and Depression in CID (Introduction) Methods Study Design and Study Population Measures Statistical Analysis Results Anxiety Depression Discussion Clinical Implications Limitations Conclusion (Additional Information) Funding Competing Interests Acknowledgments Ethics Approval Data Availability References