Measuring knowledge of patients with congenital heart disease and their parents: validity of the ‘Leuven Knowledge Questionnaire for Congenital Heart Disease’
Restricted accessResearch articleFirst published online March, 2012
Measuring knowledge of patients with congenital heart disease and their parents: validity of the ‘Leuven Knowledge Questionnaire for Congenital Heart Disease’
Background: Patients with congenital heart disease (CHD) and their parents need to have sufficient knowledge on their condition, treatment, medication, and preventive measures. The Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) was developed to comprehensively measure the level of knowledge in patients with CHD.
Aims: This study aimed to translate the LKQCHD into Chinese and to test its validity to be used in patients with CHD and their parents.
Method: Questionnaire translation was guided by a three-step linguistic validation method. Evidence based on test content and on relation with other variables was obtained. For test content, we included five experts in CHD and research methods. Furthermore, the instrument was tested in 89 pairs of adolescents with CHD and their parents.
Results: We found a high item-level content validity index (>0.78 in all except two items), high scale-level content validity index (>0.90), high free-marginal multirater Kappa (>0.75), and low average proportion of missing values (0.49% in adolescents; 0.51% in parents), showing an excellent content validity. The hypothesized positive correlations between parental knowledge and parental educational level and between patient’s knowledge and patient’s age, as well as the hypothesis that parents have more knowledge than their children, were confirmed. This provides validity evidence based on relation with other variables.
Conclusions: The Chinese version of the LKQCHD is valid to assess the level of knowledge in patients with CHD and their parents.
VeldtmanGRMatleySLKendallL. Illness understanding in children and adolescents with heart disease. Heart2000; 84(4): 395–397.
5.
ShebaniSMilesHSimmonsP. Awareness of the risk of endocarditis associated with tattooing and body piercing among patients with congenital heart disease and paediatric cardiologists in the United Kingdom. Arch Dis Child2007; 92(11): 1013–1014.
6.
KendallLParsonsJSloperP. A simple screening method for determining knowledge of the appropriate levels of activity and risk behaviour in young people with congenital cardiac conditions. Cardiol Young2007; 17(2): 151–157.
7.
KnirschWHassbergDBeyerA. Knowledge, compliance and practice of antibiotic endocarditis prophylaxis of patients with congenital heart disease. Pediatr Cardiol2003; 24(4): 344–349.
8.
KantochMCollins-NakaiRMedwidS. Adult patients’ knowledge about their congenital heart disease. Can J Cardio1997; 13(7): 641–645.
9.
MoonsPDe VolderEBudtsW. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart2001; 86(1): 74–80.
10.
Van DeykKPelgrimsETroostE. Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol2010; 106(12): 1803–1807.
DayMJ.Educational assessment of the adult with congenital heart disease. Nurs Clin N Am1994; 29(2): 299–318.
13.
HildersonDSaidiASVan DeykK. Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe. Pediatr Cardiol2009; 30(6): 786–793.
14.
Van DeykKMoonsPGewilligM. Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care. Nurs Clin N Am2004; 39(4): 755–768.
15.
PolitDFBeckCTOwenSV.Is the CVI an acceptable indicator of content validity? Appraisal and recommendations. Res Nurs Health2007; 30(4): 459–467.
16.
RandolphJJ.Free-Marginal Multirater Kappa (multirater Kfree): an alternative to Fleiss’ fixed marginal multirater kappa. The Joensuu University Learning and Instruction Symposium. Joensuu, Finland: 2005.
17.
CicchettiDVSparrowSA.Developing criteria for establishing interrater reliability of specific items: applications to assessment of adaptive behavior. Am J Ment Defic1981; 86(2): 127–137.
18.
FleissJL.Statistical Methods for Rates and Proportions. 2nd ed.New York: John Wiley & Son, 1981.
19.
CheukDKLSMYWongChoiYP. Parents’ understanding of their child’s congenital heart disease. Heart2004; 90(4): 435–439.
20.
McQuaidELKopelSJKleinRB. Medication adherence in pediatric asthma: reasoning, responsibility, and behavior. J Pediatr Psychol2003; 28(5): 323–333.
21.
CrispJUngererJAGoodnowJJ.The impact of experience on children’s understanding of illness. J Pediatr Psychol1996; 21(1): 57–72.
22.
FoxCBuchanan-BarrowEBarrettM.Children’s understanding of mental illness: an exploratory study. Child Care Health Dev2008; 34(1): 10–18.
23.
MoonsPSluysmansTDe WolfD. Congenital heart disease in 111 225 births in Belgium: birth prevalence, treatment and survival in the 21st century. Acta Paediatr2009; 98(3): 472–477.
24.
MoonsPMeijboomFJBaumgartnerH. Structure and activities of adult congenital heart disease programmes in Europe. Eur Heart J2010; 31(11): 1305–1310.
25.
MoonsPPinxtenSDedroogD. Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J Adolesc Health2009; 44(4): 316–322.
26.
MoonsPHildersonDVan DeykK. Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs2008; 7(4): 259–263.
27.
WarnesCAWilliamsRGBashoreTM. ACC/AHA 2008 Guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on practice guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). J Am Coll Cardiol2008; 52(23): e1–e121.
28.
MoonsPMarquetKBudtsW. Validity, reliability and responsiveness of the ‘Schedule for the Evaluation of Individual Quality of Life-Direct Weighting’ (SEIQoL-DW) in congenital heart disease. Health Qual Life Outcomes2004; 2: 27.
29.
KlineTJBKlineT. Psychological Testing: A Practical Approach to Design and Evaluation. Thousand Oaks, CA: SAGE, 2005.
