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![Schematic representation of the Common Sense Model of Illness Representations based on Leventhal et al.'s [54] original illustration. The coping strategies and illness outcomes dimensions are based on work by Hagger and Orbell [51]. Coping strategies include avoidance: keeping away from things that act as reminders of the illness; cognitive reappraisal: reinterpreting the meaning of something to mitigate the emotional response; emotion venting: sharing or expressing feelings with another person; problem-focussed coping: actively working towards managing or resolving the source of the stress; seeking social support: actively pursuing others who can care for you or assist with the management of stress. Illness outcomes include disease state: markers of disease stability or progression, e.g. cholesterol control in hypercholesterolaemia; physical functioning: the ability to undertake everyday tasks; role functioning: the ability to execute existing positions in one's life (e.g. at work or within the family); social functioning: the ability to interact easily with other people or in social situations.](profile/Jonathan-Skinner-4/publication/338011470/figure/fig2/AS:978757301071874@1610365333891/Schematic-representation-of-the-Common-Sense-Model-of-Illness-Representations-based-on.png)
Schematic representation of the Common Sense Model of Illness Representations based on Leventhal et al.'s [54] original illustration. The coping strategies and illness outcomes dimensions are based on work by Hagger and Orbell [51]. Coping strategies include avoidance: keeping away from things that act as reminders of the illness; cognitive reappraisal: reinterpreting the meaning of something to mitigate the emotional response; emotion venting: sharing or expressing feelings with another person; problem-focussed coping: actively working towards managing or resolving the source of the stress; seeking social support: actively pursuing others who can care for you or assist with the management of stress. Illness outcomes include disease state: markers of disease stability or progression, e.g. cholesterol control in hypercholesterolaemia; physical functioning: the ability to undertake everyday tasks; role functioning: the ability to execute existing positions in one's life (e.g. at work or within the family); social functioning: the ability to interact easily with other people or in social situations.
Source publication
At least one-third of adults living with an inherited cardiac condition report clinically-significant levels of psychological distress. Poorer health-related quality of life compared with population norms is also consistently reported. These outcomes are associated with younger patient age, having an implantable cardioverter defibrillator, and rece...
Contexts in source publication
Context 1
... successful psychosocial interventions have focussed on illness 'representations', defined in the Common Sense Model of Illness [3] (Figure 1), as how patients 'make sense of' their health condition. According to this model, individuals are not passive observers in medical consultations; rather, they are constantly seeking, receiving and processing illness-related information from multiple sources. ...
Context 2
... to the Common Sense Model of Illness, information is processed along two parallel pathways; one pathway takes into account the role of cognitive processing and the other depicts emotional processing (Figure 1). These two pathways are hypothesised to interact to form a person's mental model (or conceptualisation) of illness, which consciously or unconsciously guides health-related actions and coping responses. ...
Context 3
... the emotion processing pathway, emotional aspects of illness are taken into account and can strongly influence how patients conceptualise their health condition, and how they cope and adjust, including physical, Table 2 Risk factors for psychological distress and lower health-related quality of life in adults with an inherited cardiac condition. psychosocial and occupational functioning (Figure 1) [33]. Fear, for example, can motivate some people to be vigilant with self-management behaviours, such as attending recommended medical appointments and adhering to prescribed medications. ...
Context 4
... strategies, such as avoidance, cognitive reappraisal and emotion venting (defined in Figure 1), can directly influence illness outcomes in diverse ways, depending on the way and context in which they are used [4]. For patients with a condition that affords little personal control, such as Huntington's disease, psychological distress may be reduced by avoiding reminders of the condition. ...
Citations
... This means that a substantial proportion of "at-risk" patients will never manifest the disease [18,19]. Because of this uncertainty, disclosing positive test results can raise feelings of ambiguity and anxiety [20]. Specific hereditary worries (i.e., extended family risks, the immediate risk for carriers irrespective of age, incomplete penetrance and variable expression of disease, and the threat to minor children) can develop throughout the process of genetic testing [21][22][23]. ...
Patient-reported outcome measures (PROMs) are used to facilitate patient-centered care (PCC). While studies in patients with cardiac conditions have revealed poorer health-related quality of life (HRQoL) and elevated emotional stress, studies in inherited cardiac conditions (ICC) seem rare. A systematic review evaluated which (specific domains of) PROMs are used in patients with ICC. From three databases (PubMed, PsychINFO, and Web of Science) quantitative studies investigating PROMs in patients with ICC were included. A Cochrane-based assessment tool was used to evaluate quality and potential risk of bias per subdomain. Data from 17 eligible articles were extracted. Among the included studies, risk of bias was predominantly high (35%) or unclear (30%). Most ( n = 14) studies used a generic health status measure (SF-36, SF-12); 3 studies used a disease-specific PROM (KCCQ- cardiomyopathy and MLFHQ-heart failure). In addition to HRQoL measures, several studies used affective psychological measures (i.e., HADS, CAQ-18, IES-R, and IPQ). The mental health component of the PROMs showed lower scores overall in patients with ICC compared to population norms. Nine studies using HADS and GAD-7/PHQ-9 showed a prevalence of clinically significant anxiety (17–47%) and depression levels (8.3–28%) that were higher than the population norm (8.3% and 6.3%, respectively). HRQoL in patients with ICC is primarily assessed with generic PROMs. Results further confirmed high psychological morbidity in this population. Generic PROMS measures evaluate overall health status, but lack sensitivity to ICC-specific factors like heredity-related concerns. We propose developing a PROM specific for ICC to optimize PCC.
... Patient-reported outcome measures (PROMs) are emerging tools in evaluating psychological and emotional impact of heart diseases. 8 Addressing psychosocial aspects such as mental distress and social support can improve the overall quality of life for patients affected by the BrS, impacting treatment adherence, health outcomes, and ability to cope with diagnosis. [9][10][11][12] Differences in personality traits or the prevalence of a certain personality type, such as Type D personality (the combination of a tendency towards negative affectivity and social inhibition), may inform about the risk of mental health problems and the associated need for mental health screening. ...
Aims
Brugada syndrome (BrS) is a hereditary arrhythmic disease, associated with sudden cardiac death. To date, little is known about the psychosocial correlates and impacts associated with this disease. The aim of this study was to assess a set of patient-reported psychosocial outcomes, to better profile these patients, and to propose a tailored psychosocial care.
Methods and results
Patients were recruited at the European reference Centre for BrS at Universitair Ziekenhuis Brussel, Belgium. Recruitment was undertaken in two phases: phase 1 (retrospective), patients with confirmed BrS, and phase 2 (prospective), patients referred for ajmaline testing who had an either positive or negative diagnosis. BrS patients were compared to controls from the general population. Two hundred and nine questionnaires were analysed (144 retrospective and 65 prospective). Collected patient-reported outcomes were on mental health (12 item General Health Questionnaire; GHQ-12), social support (Oslo Social Support Scale), health-related quality of life, presence of Type-D personality (Type-D Scale; DS14), coping styles (Brief-COPE), and personality dimensions (Ten Item Personality Inventory). Results showed higher mental distress (GHQ-12) in BrS patients (2.53 ± 3.03) than in the general population (P < 0.001) and higher prevalence (32.7%) of Type D personality (P < 0.001) in patients with confirmed Brugada syndrome (BrS +). A strong correlation was found in the BrS + group (0.611, P < 0.001) between DS14 negative affectivity subscale and mental distress (GHQ-12).
Conclusion
Mental distress and type D personality are significantly more common in BrS patients compared to the general population. This clearly illustrates the necessity to include mental health screening and care as standard for BrS.
... fear of device activation and fear of failure of the device. 13 A recent review article by O'Donovan et al. 14 on patient perceptions in inherited cardiac conditions found that one-third of patients report levels of psychological distress indicative of the need for clinical intervention (e.g. pharmacological). ...
Aims:
Reduced psychological health is associated with adverse patient outcomes and higher mortality. We aimed to examine if a Brugada syndrome (BrS) diagnosis and symptomatic disease presentation were associated with an increased risk of new-onset depression or anxiety and all-cause mortality.
Methods and results:
All Danish patients diagnosed with BrS (2006-2018) with no history of psychiatric disease and available for ≥6 months follow-up were identified using nationwide registries and followed for up to 5 years after diagnosis. The development of clinical depression or anxiety was evaluated using the prescription of medication and diagnosis codes. Factors associated with developing new-onset depression or anxiety were determined using a multivariate Cox proportional hazards regression model. Disease manifestation was categorized as symptomatic (aborted cardiac arrest, ventricular tachycardia, or syncope) or asymptomatic/unspecified at diagnosis. A total of 223 patients with BrS and no history of psychiatric disease were identified (72.6% male, median age at diagnosis 46 years, 45.3% symptomatic). Of these, 15.7% (35/223) developed new-onset depression or anxiety after BrS diagnosis (median follow-up 5.0 years). A greater proportion of symptomatic patients developed new-onset depression or anxiety compared with asymptomatic patients [21/101 (20.8%) and 14/122 (11.5%), respectively, P = 0.08]. Symptomatic disease presentation (HR 3.43, 1.46-8.05) and older age (lower vs. upper tertile: HR 4.41, 1.42-13.63) were significantly associated with new-onset depression or anxiety. All-cause mortality in this group of patients treated according to guidelines was low (n = 4, 1.8%); however, 3/4 developed depression or anxiety before death.
Conclusion:
Approximately, one-sixth of patients with BrS developed new-onset depression or anxiety following a diagnosis of BrS. Symptomatic BrS disease manifestation was significantly associated with new-onset depression or anxiety.
... There are virtually no studies on educational, therapeutic, or peer network interventions in AD. In the Common-Sense Model of Illness, patients use information from multiple sources to "make sense" of their health condition, and how they conceptualize the condition can strongly influence adaptation and coping responses [50] . Adaptive or maladaptive beliefs are associated with illness outcomes, including psychological well-being, HRQoL, and treatment adherence. ...
While the topics of surgical techniques and medical therapies have been widely studied in aortic dissection (AD), studies examining the short- and long-term impact of this event on mental health are largely lacking. Many of the studies have used the 36-Item Short Form Survey (SF-36) at variable time points after the event. However, aortic dissection as medical trauma has a complex impact on a person's identity. Its implications for emotional, mental, social, existential, and self-concept could more robustly be explored. This topic was identified as a topic of interest by the AD Collaborative. The AD Collaborative Mental Health Working Group was formed and performed a landscape review to summarize current literature surroubnding quality of life research in those who have experienced AD, identify gaps in knowledge, and to outline future research questions.
Background
Implantable cardioverter defibrillators (ICDs) are an effective treatment in some patients with inherited heart disease, including inherited channelopathies, yet they have also been shown to impact patients’ psychological health.
Objective
We sought to improve understanding of the level of anxiety and depression as well as device acceptance among inherited channelopathy patients with an ICD.
Methods
Eligible patients seen at Johns Hopkins Hospital were sent a survey, which included the Hospital Anxiety and Depression Scale (HADS), Cardiac Anxiety Questionnaire (CAQ), and the Florida Patient Acceptance Survey (FPAS). Student t-tests and chi-square tests were used to identify associations with abnormal anxiety and depression scores.
Results
Among eligible patients (n=65), 32 individuals (49%) completed the survey. The rate of device-related complications was 34%, and 41% of patients experienced one or more ICD shock(s). Twelve patients (38%) had an abnormal HADS anxiety sub-score and five patients (16%) had an abnormal HADS depression sub-score (score ≥ 8). Secondary prevention ICDs were associated with an abnormal HADS anxiety sub-score (p=0.03). Experiencing ICD shock(s), device complications, age, sex, and family history of SCA were not statistically associated with anxiety or depression. Overall, respondents demonstrated high device acceptance by FPAS (79.9 ± 2.9, maximum total score 100) and moderately high cardiac-specific anxiety by CAQ total score (1.53 ± 0.12).
Conclusion
A high prevalence of generalized anxiety was identified among inherited channelopathy patients with ICDs. High device acceptance and lack of association with ICD shocks or complications indicate that further research is necessary to understand this increased incidence.
