Psychological Outcomes and Adherence in Individuals Attending the Cardiac Inherited Diseases Service

Abstract

Over the last twenty years the clinical and genetic understanding of cardiac inherited diseases (CIDs) has grown dramatically. However, our understanding of their psychosocial impact has not kept pace. The aim of this thesis was to broaden our understanding of people’s experiences of CIDs. Due to the paucity of research in this area, this thesis took an explorative approach in three main areas, 1) psychological wellbeing (anxiety and depression), 2) adherence, and 3) illness and risk perceptions. Study 1 was a cross-sectional investigation of 202 people living with a CID. Rates of anxiety and depression in this cohort exceeded those in the general population. Poorer perceived social support, greater reporting of physical symptoms and perceived consequences were associated with greater psychological distress. Beta-blocker non-adherence was associated with lower perceptions of the medication’s necessity and lower confidence in the capacity to adhere. Overall the accuracy of patients’ risk perceptions was poor, and patients appeared to have different frames of reference for risk compared to clinicians. Greater risk perceptions were associated with being non-New Zealand European, a proband, and reporting more physical symptoms and anxiety. Study 2 utilised an observational prospective design in 116 individuals being investigated for a CID. It found a relatively consistent rate of anxiety and depression over time (7% and 10% respectively). The best predictors of long-term anxiety and depression were anxiety and depression at baseline. In people diagnosed with a CID, perceptions of personal control and coherence were stronger in those prescribed a beta-blocker, compared to those not. Greater perceptions of personal control and beliefs about the beta-blocker’s necessity were associated with better adherence. This thesis provides further evidence for an increased risk of anxiety and depression in people living with and being tested for CIDs. The findings support existing evidence that non-adherence is an issue in this population, and that non-adherence and distress are associated with patient perceptions of their illness, risk and medication. The findings suggest a need for ongoing screening for anxiety and depression. Future research could investigate the utility of interventions that target patient perceptions to improve adherence, anxiety, and depression.