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Abstract：
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.
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.
摘要：
背景：风险认知会影响患者对治疗建议的参与，然而,尚不清楚心脏遗传性疾病(CID)患者是否拥有准确的风险认知.该研究旨在检查CID患者和临床医生的风险认知是否相关以及与患者认知相关的因素。
方法：202CID患者（618例[36%]）参与了一项评估心搏中止或心源性猝死（ACA/SCD）感知风险的邮政调查。中位年龄为53岁（16至83岁）；86患有长QT综合征（LQTS），69人患有肥厚型心肌病，12人患有扩张型心肌病,和27有\'其他\'。从CID注册中收集临床和遗传特征；使用心脏骤停或晕厥病史的组合确定LQTS参与者（n=77）的5年风险的临床估计。最大QTc长度，年龄,性别和基因型。
结果：患者对ACA/SCD的风险认知范围为0％至100％，（中位数为20%）。更大的风险认知与：非新西兰(NZ)欧洲人(p<0.01)，先证者(p<0.05)，报告更多的身体症状（包括与CID无关的症状）（p<0.01），和更多的焦虑症状（P<0.05）。LQTS患者的中位风险评估为15%，和临床医生的4.5%。在患者和临床医生的风险评估之间没有发现关联(rs=0.13，ns)，56%的LQTS患者高估了他们的风险，14％被低估，30％是准确的。
结论：心脏病患者的风险认知与临床医生的风险认知相关性较差。高估风险的患者往往有通常与CID无关的身体症状，和潜在的焦虑。需要更好地传达风险的技术。
方法：202CID患者（618例[36%]）参与了一项评估心搏中止或心源性猝死（ACA/SCD）感知风险的邮政调查。中位年龄为53岁（16至83岁）；86患有长QT综合征（LQTS），69人患有肥厚型心肌病，12人患有扩张型心肌病,和27有\'其他\'。从CID注册中收集临床和遗传特征；使用心脏骤停或晕厥病史的组合确定LQTS参与者（n=77）的5年风险的临床估计。最大QTc长度，年龄,性别和基因型。
结果：患者对ACA/SCD的风险认知范围为0％至100％，（中位数为20%）。更大的风险认知与：非新西兰(NZ)欧洲人(p<0.01)，先证者(p<0.05)，报告更多的身体症状（包括与CID无关的症状）（p<0.01），和更多的焦虑症状（P<0.05）。LQTS患者的中位风险评估为15%，和临床医生的4.5%。在患者和临床医生的风险评估之间没有发现关联(rs=0.13，ns)，56%的LQTS患者高估了他们的风险，14％被低估，30％是准确的。
结论：心脏病患者的风险认知与临床医生的风险认知相关性较差。高估风险的患者往往有通常与CID无关的身体症状，和潜在的焦虑。需要更好地传达风险的技术。
