Health status of cardiac genetic disease patients and their at-risk relatives

International Journal of Cardiology

Volumn 165, Issue 3, 2013, Pages 448-453

  Ingles, Jodie ^a,b   Yeates, Laura ^a   Hunt, Lauren ^c   McGaughran, Julie ^c,d   Scuffham, Paul A ^e   Atherton, John ^d,f   Semsarian, Christopher ^a,b,g  

^a CENTENARY INSTITUTE   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

^c Royal Brisbane and Wesley Hospitals Brisbane   (Australia)

^d UNIVERSITY OF QUEENSLAND   (Australia)

^e GRIFFITH UNIVERSITY   (Australia)

^f ROYAL BRISBANE AND WOMEN'S HOSPITAL   (Australia)

^g ROYAL PRINCE ALFRED HOSPITAL   (Australia)

Author keywords

Cardiac genetic disease; Health status; Mental function; Physical function

Indexed keywords

BETA ADRENERGIC RECEPTOR BLOCKING AGENT;

ADOLESCENT; ADULT; ARRHYTHMOGENESIS; ARTICLE; AUSTRALIAN; BRUGADA SYNDROME; CARDIOVASCULAR DISEASE; CATECHOLAMINERGIC POLYMORPHIC VENTRICULAR TACHYCARDIA; COMORBIDITY; CONTROLLED STUDY; ETHNIC GROUP; FAMILIAL DILATED CARDIOMYOPATHY; FEMALE; FIRST DEGREE RELATIVE; GENETIC DISORDER; GENOTYPE; HEALTH STATUS; HEART RIGHT VENTRICLE DYSPLASIA; HUMAN; HYPERTROPHIC CARDIOMYOPATHY; LONG QT SYNDROME; MAJOR CLINICAL STUDY; MALE; PHENOTYPE; POPULATION RESEARCH; PRIORITY JOURNAL; RATING SCALE; RISK ASSESSMENT; RISK FACTOR; SCORING SYSTEM; CARDIOVASCULAR PARAMETERS; CONGESTIVE CARDIOMYOPATHY; CROSS-SECTIONAL STUDY; DISEASE CLASSIFICATION; FAMILY ASSESSMENT; HEALTH SURVEY; HIGH RISK POPULATION; INHERITANCE; MENTAL FUNCTION; OUTCOME ASSESSMENT; POPULATION DISTRIBUTION; SEX DIFFERENCE;

ADULT; AGED; COHORT STUDIES; CROSS-SECTIONAL STUDIES; FEMALE; GENETIC PREDISPOSITION TO DISEASE; HEALTH STATUS; HEART DISEASES; HUMANS; MALE; MIDDLE AGED; REGISTRIES; RISK FACTORS; YOUNG ADULT;

EID: 84877042774     PISSN: 01675273     EISSN: 18741754     Source Type: Journal    
DOI: 10.1016/j.ijcard.2011.08.083     Document Type: Article

References (30)

1. J. Ingles, and C. Semsarian Sudden cardiac death in the young: a clinical genetic approach Intern Med J 37 1 Jan 2007 32 37
2. I. Christiaans, I.M. van Langen, E. Birnie, G.J. Bonsel, A.A. Wilde, and E.M. Smets Genetic counseling and cardiac care in predictively tested hypertrophic cardiomyopathy mutation carriers: the patients' perspective Am J Med Genet A 149A 7 Jul 2009 1444 1451
3. M.G. Colombo, N. Botto, S. Vittorini, U. Paradossi, and M.G. Andreassi Clinical utility of genetic tests for inherited hypertrophic and dilated cardiomyopathies Cardiovasc Ultrasound 6 2008 62
4. R.E. Hershberger, J. Cowan, A. Morales, and J.D. Siegfried Progress with genetic cardiomyopathies: screening, counseling, and testing in dilated, hypertrophic, and arrhythmogenic right ventricular dysplasia/cardiomyopathy Circ Heart Fail 2 3 May 2009 253 261
5. J. Ingles, A. Doolan, C. Chiu, J. Seidman, C. Seidman, and C. Semsarian Compound and double mutations in patients with hypertrophic cardiomyopathy: implications for genetic testing and counselling J Med Genet 42 10 Oct 2005 e59
6. I. Christiaans, I.M. van Langen, E. Birnie, G.J. Bonsel, A.A. Wilde, and E.M. Smets Quality of life and psychological distress in hypertrophic cardiomyopathy mutation carriers: a cross-sectional cohort study Am J Med Genet A 149A 4 Feb 15 2009 602 612
7. J. Ingles, J.M. Lind, P. Phongsavan, and C. Semsarian Psychosocial impact of specialized cardiac genetic clinics for hypertrophic cardiomyopathy Genet Med 10 2 Feb 2008 117 120
8. S. Cox, A.C. O'Donoghue, W.J. McKenna, and A. Steptoe Health related quality of life and psychological wellbeing in patients with hypertrophic cardiomyopathy Heart 78 2 Aug 1997 182 187
9. B.J. Maron, and C. Semsarian Emergence of gene mutation carriers and the expanding disease spectrum of hypertrophic cardiomyopathy Eur Heart J 31 13 Jul 2010 1551 1553
10. P. Vaishnava, and E.F. Lewis Assessment of quality of life in severe heart failure Curr Heart Fail Rep 4 3 Sep 2007 170 177
11. V. Konstam, D. Salem, H. Pouleur, J. Kostis, L. Gorkin, and S. Shumaker Baseline quality of life as a predictor of mortality and hospitalization in 5,025 patients with congestive heart failure. SOLVD Investigations. Studies of Left Ventricular Dysfunction Investigators Am J Cardiol 78 8 Oct 15 1996 890 895
12. J. Brazier, J. Roberts, and M. Deverill The estimation of a preference-based measure of health from the SF-36 J Health Econ 21 2 Mar 2002 271 292
13. J. Ingles, J. McGaughran, J. Vohra, R.G. Weintraub, A. Davis, and J. Atherton Establishment of an Australian National Genetic Heart Disease Registry Heart Lung Circ 17 6 Dec 2008 463 467
14. J.E. Ware, and M. Kosinski Interpreting SF-36 summary health measures: a response Qual Life Res 10 5 2001 405 413 [discussion 15-20]
15. J.E. Ware Jr., and C.D. Sherbourne The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection Med Care 30 6 Jun 1992 473 483
16. J. McCallum The SF-36 in an Australian sample: validating a new, generic health status measure Aust J Public Health 19 2 Apr 1995 160 166
17. G. Hawthorne, R.H. Osborne, A. Taylor, and J. Sansoni The SF36 version 2: critical analyses of population weights, scoring algorithms and population norms Qual Life Res 16 4 May 2007 661 673
18. ABS National health survey - SF-36 population norms Australia Statistics ABo, ed 1995
19. P. Carson, S.W. Tam, J.K. Ghali, W.T. Archambault, A. Taylor, and J.N. Cohn Relationship of quality of life scores with baseline characteristics and outcomes in the African-American heart failure trial J Card Fail 15 10 Dec 2009 835 842
20. J. Iqbal, L. Francis, J. Reid, S. Murray, and M. Denvir Quality of life in patients with chronic heart failure and their carers: a 3-year follow-up study assessing hospitalization and mortality Eur J Heart Fail 12 9 Sep 2010 1002 1008
21. K. Aktan-Collan, A. Haukkala, J.P. Mecklin, A. Uutela, and H. Kaariainen Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study Int J Cancer 93 4 Aug 15 2001 608 611
22. B. Arver, A. Haegermark, U. Platten, A. Lindblom, and Y. Brandberg Evaluation of psychosocial effects of pre-symptomatic testing for breast/ovarian and colon cancer pre-disposing genes: a 12-month follow-up Fam Cancer 3 2 2004 109 116
23. M.C. van Maarle, M.E. Stouthard, and G.J. Bonsel Quality of life in a family based genetic cascade screening programme for familial hypercholesterolaemia: a longitudinal study among participants J Med Genet 40 1 Jan 2003 e3
24. K.S. Hendriks, F.J. Grosfeld, J.P. van Tintelen, I.M. van Langen, A.A. Wilde, and J. van den Bout Can parents adjust to the idea that their child is at risk for a sudden death?: psychological impact of risk for long QT syndrome Am J Med Genet A 138A 2 Oct 1 2005 107 112
25. K.S. Hendriks, F.J. Grosfeld, A.A. Wilde, J. van den Bout, I.M. van Langen, and J.P. van Tintelen High distress in parents whose children undergo predictive testing for long QT syndrome Community Genet 8 2 2005 103 113
26. K.S. Hendriks, M.M. Hendriks, E. Birnie, F.J. Grosfeld, A.A. Wilde, and J. van den Bout Familial disease with a risk of sudden death: a longitudinal study of the psychological consequences of predictive testing for long QT syndrome Heart Rhythm 5 5 May 2008 719 724
27. A. Hamang, G.E. Eide, K. Nordin, B. Rokne, C. Bjorvatn, and N. Oyen Health status in patients at risk of inherited arrhythmias and sudden unexpected death compared to the general population BMC Med Genet 11 2010 27
28. M. Fortin, G. Bravo, C. Hudon, L. Lapointe, J. Almirall, and M.F. Dubois Relationship between multimorbidity and health-related quality of life of patients in primary care Qual Life Res 15 1 Feb 2006 83 91
29. M. Fortin, M.F. Dubois, C. Hudon, H. Soubhi, and J. Almirall Multimorbidity and quality of life: a closer look Health Qual Life Outcomes 5 2007 52
30. E.A. Bayliss, M.S. Bayliss, J.E. Ware Jr., and J.F. Steiner Predicting declines in physical function in persons with multiple chronic medical conditions: what we can learn from the medical problem list Health Qual Life Outcomes 2 2004 47