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.
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.
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.
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.
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 (
Cardiac inherited disease patients have shed some light on why this may be in two qualitative studies (
Greater clinical severity and uncertainty of risk may therefore be associated with psychological outcomes. However, research on other hereditary heart diseases has found that disease severity is not the only predictor of psychological well-being (
It is well accepted that anxiety and depression have a negative influence on patient engagement and clinical outcomes (
The aim of this study was to assess rates of anxiety and depression in the New Zealand cardiac inherited disease population and determine which clinical, demographic and psychological factors were associated with anxiety and depression. This study intentionally focused on factors that may be amenable to amelioration, including illness perceptions and social support, as these factors might help to inform the delivery of psychological interventions for this group (
The New Zealand Cardiac Inherited Diseases Register was used to recruit participants (
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-participants’. Demographic information for participants is shown in
Characteristic | |
---|---|
Demographic Characteristics | |
16 - 83 (53) | |
103 (54.2) | |
Ethnicity | |
NZ European | 151 (74.8) |
Māori & Pacific | 21 (10.4) |
Other | 16 (7.9) |
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) |
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) |
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) |
Depression was assessed using the Patient Health Questionnaire – 9 (PHQ-9) (
Anxiety was measured using the Generalized Anxiety Disorder – 7 (GAD-7) (
The Brief Illness Perception Questionnaire (Brief IPQ) (
Perceptions of risk were measured using questions based on
The Problem List is an assessment tool used to identify sources of distress in oncology patients (
The STOP-D is a five item screener used commonly in cardiac populations (
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 affected), 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 members had died from the condition. Participants also completed demographic questions including age, gender, ethnicity and employment status.
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 participants 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 participants 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 distributed data and medians were used when reporting findings. Spearman correlations were conducted to determine associations between psychological variables and age, anxiety 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 also 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 (
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 (
Means and standard deviations for all the psychological variables are reported in
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.
Psychological Variable | ||
---|---|---|
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 |
Condition | ||||
---|---|---|---|---|
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) |
Bivariate analyses (
PHQ-9 - Depression |
GAD-7 - Anxiety |
|||
---|---|---|---|---|
Spearman Correlations | ||||
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 | ||||
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 | ||||
Genetic Status | 0.53 | .777 | 0.09 | .958 |
Death of a family member (Don’t know vs No) | 9.42 | .007 | 6.31 | .043 |
The psychological variables associated with anxiety in the bivariate analyses (
Hierarchical multiple regression analysis (
Steps | 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 |
*
All significant Brief IPQ items were included in the regression except emotional representation 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 explained 9% of the variance in anxiety scores
Ethnicity was the only demographic variable related to depression
Reports of whether a family member had died due to a cardiac inherited disease was significantly related to depression
Those participants prescribed beta-blockers had significantly greater depression scores than those not prescribed them
The psychological variables associated with depression in the bivariate analysis (
A hierarchical multiple regression analysis (
Steps | 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 |
*
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 studies 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 diminish 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 (
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 illness groups including cardiac populations (
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 patients, and this is likely the case for the majority of study participants who reported having 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.
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, (
As the Common Sense Model of Illness (CSM) indicates (
Further support for the Common Sense Model was provided by this study, in that illness perceptions were strongly related to psychological distress. The consequence domain 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 (
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 coping with its consequences (
Although cardiac inherited disease patients are likely to be vulnerable to distress early on (which research shows usually dissipates) (
The fact that 14% of patients had clinical levels of psychopathology and 28% had subclinical levels regardless of clinical severity or time with the condition, suggests that psychological support should be made available to this patient population. The finding that non-Europeans had higher psychological morbidity indicates that ethnic minorities, most notably Māori and Polynesian peoples in this study, will need specific attention.
There are some limitations to this research. Although a 36% response rate is in accordance with postal and web based surveys (
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 symptoms (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 condition 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.
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.
Dr. Skinner receives salary support from Cure Kids. Claire O’Donovan receives a PhD scholarship from the University of Auckland.
The authors declare no conflicts of interest.
This study was approved by the Health and Disability Ethics Committee New Zealand and local area health board: number: 16/STH/200.
The authors have no support to report.