Family-based associations in measures of psychological distress and quality of life in a cardiac screening clinic for inheritable cardiac diseases: a cross-sectional study

Joseph Galvin,Jim O Neill,Ted Keelan,Charlene McShane,Catherine McGorrian,Niall G Mahon,Colin McQuade,Kevin Malone,Mary Codd

doi:10.1186/1471-2350-14-1

Abstract

BackgroundFamily-based cardiac screening programmes for persons at risk for genetic cardiac diseases are now recommended. However, the psychological wellbeing and health related quality of life (QoL) of such screened patients is poorly understood, especially in younger patients. We sought to examine wellbeing and QoL in a representative group of adults aged 16 and over in a dedicated family cardiac screening clinic.MethodsProspective survey of consecutive consenting patients attending a cardiac screening clinic, over a 12 month period. Data were collected using two health measurement tools: the Short Form 12 (version 2) and the Hospital Anxiety and Depression Scale (HADS), along with baseline demographic and screening visit-related data. The HADS and SF-12v.2 outcomes were compared by age group. Associations with a higher HADS score were examined using logistic regression, with multi-level modelling used to account for the family-based structure of the data.ResultsThere was a study response rate of 86.6%, with n=334 patients providing valid HADS data (valid response rate 79.5%), and data on n=316 retained for analysis. One-fifth of patients were aged under 25 (n=61). Younger patients were less likely than older to describe significant depression on their HADS scale (p<0.0001), although there were overall no difference between the prevalence of a significant HADS score between the younger and older age groups (18.0% vs 20.0%, p=0.73). Significant positive associates of a higher HADS score were having lower educational attainment, being single or separated, and being closely related to the family proband. Between-family variance in anxiety and depression scores was greater than within-family variance.ConclusionsHigh levels of anxiety were seen amongst patients attending a family-based cardiac screening clinic.Younger patients also had high rates of clinically significant anxiety. Higher levels of anxiety and depression tends to run in families, and this has implications for family screening and intervention programmes.

Highlights

Family-based cardiac screening programmes for persons at risk for genetic cardiac diseases are recommended
Most patients came with a screening indication of a known family condition, with 23.4% presenting because of a history of SADS or sudden infant death syndrome (SIDS)
Of the younger patients, over two-fifths attended for cardiomyopathy screening (42.6%, n=26), whereas 27.9% (n=17) attended for channelopathy screening, and 18.3% (n=11) attended for SADS screening

Summary

Introduction

Family-based cardiac screening programmes for persons at risk for genetic cardiac diseases are recommended. Family-based clinical and genetic cardiac screening for at-risk families is recommended by many agencies, with the aim of early identification of potentially dangerous cardiac diseases [1]. These diseases include certain cardiomyopathies as well as the cardiac “ion channelopathy” disorders. Previous studies have shown that in up to half of families with a SADS bereavement, an inherited pro-arrhythmic cardiac condition can be identified in living family members [4,5,6,7,8]. Cardiac screening clinics perform protocol-driven clinical cardiac screening both in families with a known history of an inheritable cardiac disease, and in families with a SADS bereavements [11]

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Conclusion