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Patient-reported outcomes in congenital cardiac disease: are they as good as you think they are?

Published online by Cambridge University Press:  01 December 2010

Philip Moons
Philip Moons*
Affiliation:
Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Belgium Division of Congenital and Structural Cardiology, University Hospitals Leuven, Belgium
*
Correspondence to: P. Moons, Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35, P.B. 7001, B-3000 Leuven, Belgium. Tel: +32-16-336984; Fax: +32-16-336970; E-mail: [email protected]
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Abstract

Patient-reported outcomes are “any outcome based on data provided by patients or patient proxy as opposed to data provided from other sources”. Examples of patient-reported outcomes are quality of life, well-being, functional status, symptoms, adherence to treatment, satisfaction with treatment, and utility or preference-based measures. The main question of this manuscript is whether patient-reported outcomes in patients with congenital cardiac disease are as good as we think they are. In general, we could say yes, because numerous studies show that patients with congenital cardiac disease have an excellent quality of life. By contrast, we could say no, because patients generally overestimate their functioning, and up to two out of three patients are not compliant with the prescribed therapy or recommendations for follow-up. However, most importantly, we have to say that we do not know whether the patient-reported outcomes are good, because research with patient-reported outcomes in congenital cardiac disease is limited. Hence, patient-reported outcomes should be a priority on the agenda for research in the domain of congenital cardiac disease.

Keywords

Congenital cardiac diseasenursingoutcomesquality of life
Type
Original Article
Information
Cardiology in the Young , Volume 20 , Issue S3: Rare and Challenging Congenital Cardiac Lesions: an Interdisciplinary Approach , December 2010 , pp. 143 - 148
Copyright
Copyright © Cambridge University Press 2010

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References

1.Moons, P, Bovijn, L, Budts, W, Gewillig, M. Actual prospects to survive into adulthood in patients with congenital heart disease (abstract). Circulation 2009; 120: S561.Google Scholar
2.Moons, P, Van Deyk, K, De Bleser, L, et al. Quality of life and health status in adults with congenital heart disease: a direct comparison with healthy counterparts. Eur J Cardiovasc Prev Rehabil 2006; 13: 407–413.CrossRefGoogle ScholarPubMed
3.Moons, P, Van Deyk, K, Budts, W, De Geest, S. Caliber of quality-of-life assessments in congenital heart disease: a plea for more conceptual and methodological rigor. Arch Pediatr Adolesc Med 2004; 158: 1062–1069.CrossRefGoogle ScholarPubMed
4.Latal, B, Helfricht, S, Fischer, JE, Bauersfeld, U, Landolt, MA. Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review. BMC Pediatr 2009; 9: 6.CrossRefGoogle ScholarPubMed
5.Moons, P, Budts, W, De Geest, S. Critique on the conceptualisation of quality of life: a review and evaluation of different conceptual approaches. Int J Nurs Stud 2006; 43: 891–901.CrossRefGoogle ScholarPubMed
6.Wolfensberger, W. Let’s hang up ‘quality of life’ as a hopeless term. In: Goode D (ed.). Quality of Life for Persons with Disabilities: International Perspectives and Issues. Brookline Books, Cambridge, MA, 1994, pp 285–321.Google Scholar
7.Acquadro, C, Berzon, R, Dubois, D, et al. Incorporating the patient’s perspective into drug development and communication: an ad hoc task force report of the patient-reported outcomes (PRO) Harmonization group meeting at the Food and Drug Administration, February 16, 2001. Value Health 2003; 6: 522–531.CrossRefGoogle Scholar
8.Fekkes, M, Kamphuis, RP, Ottenkamp, J, et al. Health-related quality of life in young adults with minor congenital heart disease. Psychol Health 2001; 16: 239–250.CrossRefGoogle Scholar
9.Gersony, WM, Hayes, CJ, Driscoll, DJ, et al. Second natural history study of congenital heart defects. Quality of life of patients with aortic stenosis, pulmonary stenosis, or ventricular septal defect. Circulation 1993; 87: I52–I65.Google ScholarPubMed
10.Meijboom, F, Hess, J, Szatmari, A, et al. Long-term follow-up (9 to 20 years) after surgical closure of atrial septal defect at a young age. Am J Cardiol 1993; 72: 1431–1434.CrossRefGoogle ScholarPubMed
11.Meijboom, F, Szatmari, A, Utens, E, et al. Long-term follow-up after surgical closure of ventricular septal defect in infancy and childhood. J Am Coll Cardiol 1994; 24: 1358–1364.CrossRefGoogle ScholarPubMed
12.Meijboom, F, Szatmari, A, Deckers, JW, et al. Cardiac status and health-related quality of life in the long term after surgical repair of tetralogy of Fallot in infancy and childhood. J Thorac Cardiovasc Surg 1995; 110: 883–891.CrossRefGoogle Scholar
13.Meijboom, F, Szatmari, A, Deckers, JW, et al. Long-term follow-up (10 to 17 years) after Mustard repair for transposition of the great arteries. J Thorac Cardiovasc Surg 1996; 111: 1158–1168.CrossRefGoogle ScholarPubMed
14.Saliba, Z, Butera, G, Bonnet, D, et al. Quality of life and perceived health status in surviving adults with univentricular heart. Heart 2001; 86: 69–73.Google ScholarPubMed
15.Kamphuis, M, Ottenkamp, J, Vliegen, HW, et al. Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002; 87: 356–362.CrossRefGoogle ScholarPubMed
16.Lane, DA, Lip, GY, Millane, TA. Quality of life in adults with congenital heart disease. Heart 2002; 88: 71–75.CrossRefGoogle ScholarPubMed
17.Simko, LC, McGinnis, KA. Quality of life experienced by adults with congenital heart disease. AACN Clin Issues 2003; 14: 42–53.CrossRefGoogle ScholarPubMed
18.Simko, LC, McGinnis, KA. What is the perceived quality of life of adults with congenital heart disease and does it differ by anomaly? J Cardiovasc Nurs 2005; 20: 206–214.CrossRefGoogle ScholarPubMed
19.Walker, WT, Temple, IK, Gnanapragasam, JP, Goddard, JR, Brown, EM. Quality of life after repair of tetralogy of Fallot. Cardiol Young 2002; 12: 549–553.CrossRefGoogle ScholarPubMed
20.Rose, M, Kohler, K, Kohler, F, Sawitzky, B, Fliege, H, Klapp, BF. Determinants of the quality of life of patients with congenital heart disease. Qual Life Res 2005; 14: 35–43.CrossRefGoogle ScholarPubMed
21.Immer, FF, Althaus, SM, Berdat, PA, Saner, H, Carrel, TP. Quality of life and specific problems after cardiac surgery in adolescents and adults with congenital heart diseases. Eur J Cardiovasc Prev Rehabil 2005; 12: 138–143.CrossRefGoogle ScholarPubMed
22.Jefferies, JL, Noonan, JA, Keller, BB, Wilson, JF, Griffith, C III. Quality of life and social outcomes in adults with congenital heart disease living in rural areas of Kentucky. Am J Cardiol 2004; 94: 263–266.CrossRefGoogle ScholarPubMed
23.Moons, P, De Bleser, L, Budts, W, et al. Health status, functional abilities and quality of life following the Mustard or Senning operation. Ann Thorac Surg 2004; 77: 1359–1365.CrossRefGoogle ScholarPubMed
24.Gratz, A, Hess, J, Hager, A. Self-estimated physical functioning poorly predicts actual exercise capacity in adolescents and adults with congenital heart disease. Eur Heart J 2009; 30: 497–504.CrossRefGoogle ScholarPubMed
25.Hager, A, Hess, J. Comparison of health related quality of life with cardiopulmonary exercise testing in adolescents and adults with congenital heart disease. Heart 2005; 91: 517–520.CrossRefGoogle ScholarPubMed
26.Häyry, M. Measuring the quality of life: why, how and what? In: Joyce CRB, O’Boyle CA, McGee H (eds). Individual Quality of Life: Approaches to Conceptualisation and Assessment. Harwood Academic Publishers, Amsterdam, 1999, pp 9–27.Google Scholar
27.Moons, P, Van Deyk, K, Marquet, K, et al. Individual quality of life in adults with congenital heart disease: a paradigm shift. Eur Heart J 2005; 26: 298–307.CrossRefGoogle ScholarPubMed
28.Moons, P. Why call it health-related quality of life when you mean perceived health status? Eur J Cardiovasc Nurs 2004; 3: 275–277.CrossRefGoogle ScholarPubMed
29.Moons, P, Van Deyk, K, Marquet, K, De Bleser, L, Budts, W, De Geest, S. Symptom experience in adults with congenital heart disease (abstract). Eur Heart J 2006; 27: 791.Google Scholar
30.Kamphuis, M, Zwinderman, KH, Vogels, T, et al. A cardiac-specific health-related quality of life module for young adults with congenital heart disease: development and validation. Qual Life Res 2004; 13: 735–745.CrossRefGoogle ScholarPubMed
31.Sabate, E. Adherence to Long-term Therapies: Evidence for Action. World Health Organization, Geneva, 2003, 1–194.Google Scholar
32.Ittenbach, RF, Cassedy, AE, Marino, BS, Spicer, RL, Drotar, D. Adherence to treatment among children with cardiac disease. Cardiol Young 2009; 19: 545–551.CrossRefGoogle ScholarPubMed
33.Van Damme, S, Van Deyk, K, Budts, W, Verhamme, P, Moons, P. Patient knowledge of and adherence to oral anticoagulation therapy after mechanical heart-valve replacement for congenital or acquired valve defects. Heart Lung 2010 (in press).Google Scholar
34.Wray, J, Maynard, L. Specialist cardiac services: what do young people want? Cardiol Young 2008; 18: 569–574.CrossRefGoogle ScholarPubMed
35.Moons, P, Pinxten, S, Dedroog, D, et al. Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J Adolesc Health 2009; 44: 316–322.CrossRefGoogle Scholar
36.Dolan, P, Gudex, C, Kind, P, Williams, A. Valuing health states: a comparison of methods. J Health Econ 1996; 15: 209–231.CrossRefGoogle Scholar