Illness perceptions of adults with congenital heart disease and their predictive value for quality of life two years later

Abstract

Background:

To improve patients’ quality of life (QoL) we need to identify modifiable determinants, such as illness perceptions. Patients’ illness perceptions are known to regulate emotional responses and health-behaviour. Illness perceptions comprise several components: consequences, control, coherence, changeability and emotional representations.

Aims:

To examine (a) the relation between patient characteristics and illness perceptions, and (b) the independent predictive value of illness perceptions for future QoL.

Methods:

A longitudinal study in 845 patients with congenital heart disease was conducted. Patients completed three questionnaires: the IPQ-R (illness perceptions) and two years later the SF-36 and TAAQOL-CHD (QoL). Linear regression analyses were performed relating illness perceptions to patient characteristics (sex, age, disease complexity and functional status) and QoL.

Results:

Patients with a complex defect or poor functional status reported poor illness perceptions. Independent of patient characteristics, poor illness perceptions (i.e. a strong belief that the illness has severe consequences; a weak belief that you have a coherent illness understanding and that the illness can be controlled by treatment; and a strong belief that the illness is changeable and causes negative emotions) were predictive of future QoL.

Conclusion:

Illness perceptions independently predict QoL, suggesting that QoL may be improved by altering patients’ beliefs about their illness. For example, increasing patients’ knowledge regarding their disease and informing them about treatment opportunities may enhance their QoL.

Keywords

Congenital heart disease quality of life illness perceptions

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References

Moons

Bovijn

Budts

. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 2010; 122: 2264–2272.

Engelfriet

Boersma

Oechslin

. The spectrum of adult congenital heart disease in Europe: Morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease. Eur Heart J 2005; 26: 2325–2333.

Schoormans

Mulder

Sprangers

MA.

Letter by Schoormans, et al. regarding article, Recommendations for improving the quality of interdisciplinary care of grown-up with congenital heart disease (GUCH). Int J Cardiol 2011; 151: 121.

Baumgartner

Bonhoeffer

de Groot

. ESC Guidelines for the management of grown-up congenital heart disease (new version 2010). Eur Heart J 2010; 31: 2915–2957.

Meijboom

Mulder

Problems in the organization of care for patients with adult congenital heart disease. Arch Cardiovasc Dis 2010; 103: 411–415.

Moons

Engelfriet

Kaemmerer

. Delivery of care for adult patients with congenital heart disease in Europe: Results from the Euro Heart Survey. Eur Heart J 2006; 27: 1324–1330.

Bruto

Harrison

Fedak

PWM

. Determinants of health-related quality of life in adults with congenital heart disease. Congenit Heart Dis 2007; 2: 301–313.

Jefferies

Noonan

Keller

. 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.

Simko

McGinnis

KA.

Quality of life experienced by adults with congenital heart disease. AACN Clin Issues 2003; 14: 42–53.

10.

Simko

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.

11.

Immer

Althaus

Berdat

. 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.

12.

Loup

von Weissenfluh

Gahl

. Quality of life of grown-up congenital heart disease patients after congenital cardiac surgery. Eur J Cardiothorac Surg 2009; 36: 105–111.

13.

Moons

Gewillig

Sluysmans

. Long term outcome up to 30 years after the Mustard or Senning operation: A nationwide multicentre study in Belgium. Heart 2004; 90: 307–313.

14.

Moons

van Deyk

de Bleser

. 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.

15.

Saliba

Butera

Bonnet

. Quality of life and perceived health status in surviving adults with univentricular heart. Heart 2001; 86: 69–73.

16.

Rose

Kohler

. Determinants of the quality of life of patients with congenital heart disease. Qual Life Res 2005; 14: 35–43.

17.

Vigl

Niggemeyer

Hager

. The importance of socio-demographic factors for the quality of life of adults with congenital heart disease. Qual Life Res 2011; 20: 169–177.

18.

Schoormans

Mulder

van Melle

. Patients with a congenital heart defect and Type D personality feel functionally more impaired, report a poorer health status and quality of life, but use less healthcare. Eur J Cardiovasc Nurs 2012; 11: 349–355.

19.

Moons

van Deyk

de Geest

. Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients? Heart 2005; 91: 1193–1198.

20.

Teixeira

Coelho

Proenca

. Quality of life experienced by adolescents and young adults with congenital heart disease. Pediatr Cardiol 2011; 32: 1132–1138.

21.

Ternestedt

Wall

Oddsson

. Quality of life 20 and 30 years after surgery in patients operated on for tetralogy of Fallot and for atrial septal defect. Pediatr Cardiol 2001; 22: 128–132.

22.

Pryce

Metcalfe

Hall

. Illness perceptions and hearing difficulties in King–Kopetzky syndrome: What determines help seeking? Int J Audiol 2010; 49: 473–481.

23.

Frostholm

Fink

Christensen

. The patients' illness perceptions and the use of primary health care. Psychosom Med 2005; 67: 997–1005.

24.

Vanheusden

van der Ende

Mulder

. Beliefs about mental health problems and help-seeking behavior in Dutch young adults. Soc Psychiatry Psychiatr Epidemiol 2009; 44: 239–246.

25.

Ross

Walker

MacLeod

MJ.

Patient compliance in hypertension: Role of illness perceptions and treatment beliefs. J Hum Hypertens 2004; 18: 607–613.

26.

McCabe

Barnason

SA.

Illness perceptions, coping strategies, and symptoms contribute to psychological distress in patients with recurrent symptomatic atrial fibrillation. J Cardiovasc Nurs 2012; 27: 431–444.

27.

Dempster

McCorry

Brennan

. Do changes in illness perceptions predict changes in psychological distress among oesophageal cancer survivors? J Health Psychol 2011; 16: 500–509.

28.

Stafford

Berk

Jackson

HJ.

Are illness perceptions about coronary artery disease predictive of depression and quality of life outcomes?

J Psychosom Res 2009; 66: 211–220.

29.

Timmers

Thong

Dekker

. Illness perceptions in dialysis patients and their association with quality of life. Psychol Health 2008; 23: 679–690.

30.

Alsen

Brink

Persson

. Illness perceptions after myocardial infarction: Relations to fatigue, emotional distress, and health-related quality of life. J Cardiovasc Nurs 2010; 25: E1-E10.

31.

Karsdorp

Kindt

Everaerd

. Preattentive processing of heart cues and the perception of heart symptoms in congenital heart disease. Behav Res Ther 2007; 45: 1893–1902.

32.

Karsdorp

Kindt

Rietveld

. Stress-induced heart symptoms and perceptual biases in patients with congenital heart disease. Int J Cardiol 2007; 114: 352–357.

33.

Karsdorp

Kindt

Rietveld

. False heart rate feedback and the perception of heart symptoms in patients with congenital heart disease and anxiety. Int J Behav Med 2009; 16: 81–88.

34.

Petrie

Jago

Devcich

DA.

The role of illness perceptions in patients with medical conditions. Curr Opin Psychiatry 2007; 20: 163–167.

35.

Schoormans

Sprangers

Pieper

. The perspective of patients with congenital heart disease: Does health care meet their needs? Congenit Heart Dis 2011; 6: 219–227.

36.

Van der Velde

Vriend

Mannens

. CONCOR, an initiative towards a national registry and DNA-bank of patients with congenital heart disease in the Netherlands: Rationale, design, and first results. Eur J Epidemiol 2005; 20: 549–557.

37.

Rickham

PP.

Human experimentation. Code of ethics of the World Medical Association. Declaration of Helsinki. Br Med J 1964; 2: 177.

38.

Warnes

Liberthson

Danielson

. Task force 1: The changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.

39.

Schoormans

Mager

Oort

. New York Heart Association class assessment by cardiologists and outpatients with congenital cardiac disease: A head-to-head comparison of three patient-based versions. Cardiol Young 2012; 22: 26–33.

40.

Moss-Morris

Weinman

Petrie

. The revised illness perception questionnaire (IPQ-R). Psychol Health 2002; 17: 1–16.

41.

Schipper

Clinch

Olweny

CLM

. Quality of life studies: Definitions and conceptual issues. In: Spilker

(ed.) Quality of life and pharmacoeconomics in clinical trials. 2nd ed. Philadelphia: Lippincott-Raven, 1996, pp.11–23.

42.

Ware

Jr Sherbourne

. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992; 30: 473–483.

43.

Kamphuis

Zwinderman

Vogels

. 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.

44.

Ware

Jr.

SF-36 health survey update. Spine (Phila Pa 1976) 2000; 25: 3130–3139.

45.

Moons

de Bleser

Budts

. Health status, functional abilities, and quality of life after the Mustard or Senning operation. Ann Thorac Surg 2004; 77: 1359–1365.

46.

Riley

Habibi

Banya

. Education and support needs of the older adult with congenital heart disease. J Adv Nurs 2012; 68: 1050–1060.

47.

Broadbent

Donkin

Stroh

JC.

Illness and treatment perceptions are associated with adherence to medications, diet, and exercise in diabetic patients. Diabetes Care 2011; 34: 338–340.

48.

Overgaard

Schrader

Lisby

. Patient-reported outcomes in adult survivors with single-ventricle physiology. Cardiology 2011; 120: 36–42.

49.

Moons

de Geest

Budts

Comprehensive care for adults with congenital heart disease: Expanding roles for nurses. Eur J Cardiovasc Nurs 2002; 1: 23–28.

50.

Moons

Norekval

TM.

Is sense of coherence a pathway for improving the quality of life of patients who grow up with chronic diseases? A hypothesis. Eur J Cardiovasc Nurs 2006; 5: 16–20.

51.

Apers

Luyckx

Rassart

. Sense of coherence is a predictor of perceived health in adolescents with congenital heart disease: A cross-lagged prospective study. Int J Nurs Stud 2013; 50: 776–785.

52.

Goulding

Furze

Birks

Randomized controlled trials of interventions to change maladaptive illness beliefs in people with coronary heart disease: Systematic review. J Adv Nurs 2010; 66: 946–961.

53.

Janssen

de Gucht

van Exel

. Changes in illness perceptions and quality of life during participation in cardiac rehabilitation. Int J Behav Med 2013; 20: 582–589.

54.

Williams

O’Connor

Grubb

. Type D personality and illness perceptions in myocardial infarction patients. J Psychosom Res 2011; 70: 141–144.