Cardiac Inherited diseases (CID) and minority ethnic status are both associated with anxiety and depression. This study aimed to investigate differences in patient experiences of CID between ethnic groups in New Zealand (NZ) in order to inform psychosocial interventions and promote health equity. A cross-sectional survey was administered to a NZ CID database. One-hundred and fifty-two (152) NZ Europeans, 19 Māori, and two Pasifika participated. Māori and Pasifika peoples reported significantly greater symptom perceptions, shorter timeline perceptions, higher perceived risk of severe symptoms, and were less likely to attribute the cause of their CID to hereditary factors than NZ Europeans. Māori and Pasifika also reported more anxiety and distress, although both groups reported beneficial medication perceptions and high medication adherence. Differences could not be attributed to clinical or other demographic variables. The use of screening tools and development of culturally appropriate interventions may help reduce both distress and health inequities.

UNASSIGNED: Cardiac inherited diseases can have considerable psychosocial effects, including lifestyle limitations, anxiety and depression. Most research to date on patient experiences of CID has been conducted with people from Western cultures, yet culture can shape patient views and experiences of health. The aim of this research was to explore the experiences and perspectives of Māori and Pasifika living with a cardiac inherited disease (CID).
UNASSIGNED: Semi-structured interviews were conducted with 14 Māori and 14 Pasifika patients living with a cardiac inherited disease and seven of their family members, using Talanoa and Kaupapa Māori methodologies. Themes from the interviews were identified using interpretative phenomenological analysis.
UNASSIGNED: Three common themes were identified as important in shaping participants\' perceptions and experiences of CID: (1) difficulty in understanding the disease as separate from symptoms, (2) considering ancestors and future generations and (3) the role of spirituality and religion.
UNASSIGNED: This study highlights a gap between indigenous patients\' understanding of CID and the western biomedical approach. Patients\' understanding and treatment behaviours depend on symptoms, familial ties and spirituality. The findings support the need for transparency and culturally appropriate practices in healthcare. Considering these aspects may help to reduce health inequities for these populations.

Little is known about the psychological experiences of individuals being investigated for cardiac inherited diseases (CID). This study aimed to assess the prevalence, trajectory and associated variables of anxiety and depression in this population.
This was a longitudinal study with 116 individuals being investigated for a CID; 85 (73%) completed follow-up.
Questionnaires were administered at the first appointment, post-disclosure of genetic results, and six-months later. Questionnaires measured demographic and psychological variables. The NZCID Registry provided clinical and genetic information.
Thirty-seven (43%) individuals reported clinical and subclinical levels of anxiety and/or depression at least once. Anxiety and depression at follow up were associated with anxiety (p < .001) and depression (p < .001) at baseline. Elevated anxiety and depression scores at any point were also associated with more reporting of somatic symptoms (p < .001), poorer social support (p < .01) and greater intolerance for uncertainty (p < .001). There were five different trajectories of anxiety and depression: stable-low, stable-high, increasing, decreasing and fluctuating.
A significant minority of individuals being investigated for a CID experience anxiety and depression. Ongoing screening for anxiety, depression, social support and somatic symptoms could help identify those individuals.

BACKGROUND: Risk perceptions influence patient engagement with treatment recommendations, yet it is unknown whether patients with a cardiac inherited disease (CID) hold accurate risk perceptions. The study aimed to examine whether CID patients\' and clinician\'s risk perceptions correlate and factors associated with patient perceptions.
METHODS: 202 CID patients (of 618 [36%]) participated in a postal survey assessing perceived risk of aborted cardiac arrest or sudden cardiac death (ACA/SCD). Median age was 53 (16 to 83 years); 86 had Long QT Syndrome (LQTS), 69 had hypertrophic cardiomyopathy, 12 had dilated cardiomyopathy, and 27 had \'other\'. Clinical and genetic characteristics were collected from the CID registry; clinical estimate of 5-year risk was determined for LQTS participants (n = 77) using a combination of cardiac arrest or syncope history, maximal QTc length, age, sex and genotype.
RESULTS: Patients\' risk perceptions of ACA/SCD ranged from 0 to 100%, (median 20%). Greater risk perceptions were associated with: non-New Zealand (NZ) Europeans (p < 0.01), probands (p < 0.05), reporting more physical symptoms (including those unrelated to CID) (p < 0.01), and more symptoms of anxiety (p < 0.05). Median risk assessment by LQTS patients was 15%, and by the clinician was 4.5%. No association was found between patient and clinician assessments of risk (rs = 0.13, ns), 56% of LQTS patients overestimated their risk, 14% underestimated and 30% were accurate.
CONCLUSIONS: Cardiac inherited disease patients\' risk perceptions correlate poorly with those of the clinician. Patients overestimating risk tend to have physical symptoms usually unrelated to their CID, and underlying anxiety. Techniques to better communicate risk are needed.