Table 1 Study characteristics.

From: Are disease-specific patient-reported outcomes measures (PROMs) used in cardiogenetics? A systematic review

Study ID

Sample size (n)

Year

Study design

Country

Disease

Population

RQ 1

RQ 2

Brouwers 2015

130

2015

CROSS-SECTIONAL

THE NETHERLANDS

NCCM

Manifest ICC

- health status

- adverse psychological factors

Hamang 2010

127

2010

CROSS-SECTIONAL

NORWAY

LQTS, HCM; AR HCM, AR LQTS

Manifest ICC + presymptomatic

- health status

- sociodemographic determinants & health status domains

Ingles 2013

409

2013

CROSS-SECTIONAL

AUSTRALIA

ICC and AR ICC

Manifest ICC + presymptomatic

- health status

N/A

Hamang 2011

126

2011

CROSS-SECTIONAL

NORWAY

LQTS, HCM; AR HCM, AR LQTS

Manifest ICC + presymptomatic

- HFA

N/A

Hamang 2012

173

2012

PROSPECTIVE

NORWAY

LQTS, HCM; AR HCM, AR LQTS

Manifest ICC + presymptomatic

- HFA

N/A

Cox 1997

137

1997

CROSS-SECTIONAL

UNITED KINGDOM

HCM

Manifest ICC

- HRQOL

- PW

Steptoe 2000

60

2000

CROSS-SECTIONAL

UNITED KINGDOM

DCM

Manifest ICC

- HRQOL

- PD

Christiaans 2009

228

2009

CROSS-SECTIONAL

THE NETHERLANDS

HCM

Manifest ICC

- HRQOL

- sociodemographic, risk and illness perception

Pedrosa 2010

84

2010

CROSS-SECTIONAL

BRAZIL

HCM

Manifest ICC

- HRQOL

- sleep

Huff 2012

24

2012

CROSS-SECTIONAL

USA

HCM

Manifest ICC

- HRQOL

- correlation between KCCQ and NYHA class

Capota 2020

91

2020

CROSS-SECTIONAL

ROMANIA

HCM

Manifest ICC

- HRQOL

- identify predictors

Ingles 2012

54

2012

PROSPECTIVE

AUSTRALIA

ICC ; AR ICC

Manifest ICC + presymptomatic

- HRQOL

N/A

Richardson 2018

54

2018

CROSS-SECTIONAL

AUSTRALIA

CPVT; AR CPVT

Manifest ICC + presymptomatic

- HRQOL

- PW

McGorrian 2013

334

2013

CROSS-SECTIONAL

IRELAND

AR ICC

Presymptomatic

- HRQOL

- PW

Brothers 2021

73

2021

PROSPECTIVE

CANADA

AR ARVC

Presymptomatic

- HRQOL

- PD

Hickey 2014

58

2014

CROSS-SECTIONAL

USA

ICC

Manifest ICC

- PD/PW

N/A

Ingles 2015

486

2015

CROSS-SECTIONAL

AUSTRALIA

HCM; AR HCM

Manifest ICC + presymptomatic

- PD/PW

- sociodemographic determinants

Total

N = 2648 [24–486]

[1997–2021]

      
  1. This table shows the study characteristics (study design, country, and sample size) and primary outcome measures used of all included studies. The 17 studies included PRO reports from 2648 participants, with sample sizes ranging from 24 to 486. Population characteristics varied in terms of sex distribution, age, clinical diagnosis, genetic testing (pre-symptomatic, symptomatic and diagnostic screening), carrier status, and “at-risk” family members.
  2. NCCM noncompaction cardiomyopathy, LQTS long QT syndrome, HCM hypertrophic cardiomyopathy, AR at risk, DCM dilated cardiomyopathy, CPVT catecholaminergic polymorphic ventricular tachycardia, ARVC arrhythmogenic right ventricular cardiomyopathy, PD psychological distress, PW psychological wellbeing, HFA heart-focused anxiety.
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