The MacNew heart disease health-related quality of life questionnaire: Updated reference data for users
Abstract
Background: The key to interpreting patient-reported health-related quality of life [HRQL] scores for use in person-centered healthcare approaches in clinical practice is having normative reference data to place the scores in the context of a meaningful reference group. The purpose of this analysis is to update and extend existing norms for the MacNew HRQL questionnaire.
Methods: Patients with angina, myocardial infarction, or heart failure enrolled in the HeartQoL Project provided MacNew HRQL Global scale and Physical, Emotional and Social subscale data from which norms have been generated.
Results: Patients (n=6,130; angina, 32.4%; myocardial infarction, 37.5% and heart failure, 30.1%) living in 22 different countries provided MacNew HRQL scores. Mean MacNew Global HRQL in the total group was 5.04 (±1.1); Global scale and Physical, Emotional, and Social subscale scores were higher in patients with MI than in patients with either angina or heart failure (p<0.001) and higher in patients with angina than in patients with heart failure (p<0.001). Mean Physical subscale scores were lower than either Emotional or Social subscale scores. Mean MacNew Global scale and subscale scores were higher in males and older patients than females and younger patients. The minimal important difference of 0.5 points on the 7-point MacNew was consistent with a 0.5 standard deviation around the mean MacNew scores in each diagnosis.
Conclusion: Norms for the MacNew questionnaire have been updated permitting meaningful interpretation of HRQL for an individual patient or for groups of patients with angina, myocardial infarction or heart failure.
Keywords
Full Text:
PDFReferences
MacNew.org. MacNew health-related quality of life instrument. 2015. (Accessed 12 March 2015). Available from: http://www.macnew.org/wp/.
Dixon, T., Lim, L. & Oldridge, N. (2002). The MacNew health-related quality of life instrument: Reference data for users. Quality of Life Research 11, 173-183.
Anker, S.D., Agewall, S., Borggrefe, M., Calvert, M., Jaime Caro, J., Cowie, M.R., Ford, I., Paty, J.A., Riley, J.P. Swedberg, K., Tavazzi, L., Wiklund, I. & Kirchhof, P. (2014). The importance of patient-reported outcomes: a call for their comprehensive integration in cardiovascular clinical trials. European Heart Journal 35, 2001-2009.
Rumsfeld, J.S., Alexander, K.P., Goff, D.C. Jr., Graham, M.M., Ho, Pm., Masoudi, F.A., Moser, D.K., Roger, V.L., Slaughter, M.S., Smolderen, K.G., Spertus, J.A., Sullivan, M.D., Treat-Jacobson, D., Zerwic, J.J., American Heart Association Council on Quality of Care and Outcome Research, Council on Cardiovascular and Stroke Nursing, Council on Epidemiology and Prevention, Council on Peripheral Vascular Disease & Stroke Council. (2013). Cardiovascular health: the importance of measuring patient-reported health status: a scientific statement from the American Heart Association. Circulation 127, 2233-2249.
Committee for Medicinal Products for Human Use. Reflection paper on the regulatory guidance for the use of health-related quality of life (HRQL) measures in the evaluation of medicinal products: European Medicines Agency; 2005 (Accessed 12 March 2015). Available from: http://www.ema.europa.eu/ema/pages/includes/document/open_document.jsp?webContentId=WC500003637.
U.S. Department of Health and Human Services, Food and Drug Administration. Guidance for industry. Patient-reported outcome measures: Use in medical product development to support labeling claims. Washington, DC. 2009 (Accessed 12 March 2015). Available from: http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM193282.pdf
Scientific Advisory Committee of Medical Outcomes Trust. (2002). Assessing health status and quality-of-life instruments: attributes and review criteria. Quality of Life Research 11, 193-205.
Reeve, B.B., Wyrwich, K.W., Wu, A.W., Velikova, G., Terwee, C.B., Snyder, C.F., Schwartz, C., Revicki, D.A., Moinpour, C.M., McLeod, L.D., Lyons, J.C., Lenderking, W.R., Hinds, P.S., Hays, R.D., Greenhaigh, J., Gershon, R., Feeny, D., Fayers, P.M., Celia, D., Brundage, M., Ahmed, S., Aaronson, N.K. & Butt, Z. (2013). ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Quality of Life Research 22, 1889-1905.
Jaeschke, R., Singer, J. & Guyatt, G.H. (1989). Ascertaining the minimal clinically important difference. Controlled Clinical Trials 10, 407-415.
Oldridge, N., Höfer, S, McGee, H., Conroy, R., Doyle, F., Saner, H., for the HeartQoL Project investigators. (2014). The HeartQoL: Part I. Development of a new core health-related quality of life questionnaire for patients with ischemic heart disease. European Journal of Preventive Cardiology 21, 90-97.
Höfer, S., Lim,. L.L., Guyatt, G.H. & Oldridge, N. (2004). The MacNew Heart Disease Health-related Quality of Life Instrument: A Summary. Health and Quality of Life Outcomes 2, 3.
Lim, L.L-Y., Valenti, L.A., Knapp, J.C., Dobson, A.J., Plotnikoff, R., Higginbotham, N. & Heller, R.F. (1993). A self-administered quality of life questionnaire after acute myocardial infarction. Journal of Clinical Epidemiology 46, 1249-1256.
Valenti, L., Lim, L., Heller, R.F. & Knapp, J. (1996). An improved questionnaire for assessing quality of life after myocardial infarction. Quality of Life Research 5, 151-161.
Campeau, L. (1976). Grading of angina pectoris. Circulation 54, 522-523.
New York Heart Association. (1994). Functional capacity with heart disease. In: The Criteria Committee of the New York Heart Association. Nomenclature and Criteria for Diagnosis of Diseases of the Heart and Great Vessels, pp. 253-256. Boston: Little, Brown & Co.
Yu, D.S., Thompson, D.R., Yu, C.M. & Oldridge, N.B. (2008). Validation of the Chinese version of the MacNew heart disease health-related quality of life questionnaire. Journal of Evaluation in Clinical Practice 14, 326-335.
Maes, S., De Gucht, V., Goud, R., Hellemans, I. & Peek, N. (2008). Is the MacNew quality of life questionnaire a useful diagnostic and evaluation instrument for cardiac rehabilitation? European Journal of Cardiovascular Prevention and Rehabilitation 15, 516-520.
Oldridge, N., Höfer, S., McGee, H., Conroy, R., Doyle, F., Saner, H., for the HeartQoL Project investigators. (2014). The HeartQoL: Part II. Validation of a new core health-related quality of life questionnaire for patients with ischemic heart disease. European Journal of Preventive Cardiology 21, 98-106.
Ware, J. & Kosinski, M. (2005). The SF-36 Physical and Mental Health Summary Scales: A Manual for Users of Version 1, Second Edition. Lincoln, Rhode Island: QualityMetric Incorporated.
Longmore, R.B., Spertus, J.A., Alexander, K.P., Gosch, K., Reid, K.J., Masoudi, F.A., Krumholz, H.M. & Rich, M.W. (2011). Angina frequency after myocardial infarction and quality of life in older versus younger adults: the Prospective Registry Evaluating Myocardial Infarction: Event and Recovery study. American Heart Journal 161, 631-638.
Graham, M.M., Norris, C.M., Galbraith, P.D., Knudtson, M.L., Ghali, W.A. & APPROACH Investigators. (2006). Quality of life after coronary revascularization in the elderly. European Heart Journal 27, 1690-1698.
Skevington, S.M., Lotfy, M. & O'Connell, K.A. (2004). The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research 13, 299-310.
Alonso, J., Ferrer, M., Gandek, B., Ware, J.E.Jr., Aaronson, N.K., Mosconi, P., Rasmussen, N.K., Bullinger, M., Fukuhara, S., Kaasa, S. Leplège, A. & IQOLA Project Group. (2004). Health-related quality of life associated with chronic conditions in eight countries: results from the International Quality of Life Assessment (IQOLA) Project. Quality of Life Research 13, 283-298.
De Smedt, D., Clays, E., Annemans, L., Doyle, F., Kotseva, K., Pajak, A., Prugger, C., Jennings, C., Wood, D. & De Bacquer, D. (2013). Health related quality of life in coronary patients and its association with their cardiovascular risk profile: results from the EUROASPIRE III survey. International Journal of Cardiology 168, 898-903.
Norman, G.R., Sloan, J.A. & Wyrwich, K.W. (2003). Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Medical Care 41, 582-592.
Norman, G.R., Sloan, J.A. & Wyrwich, K.W. (2004). The truly remarkable universality of half a standard deviation: confirmation through another look. Expert Review of Pharmacoeconomic Outcomes Research 4, 581-585.
Liang, M.H., Fossel, A.H. & Larson, M.G. (1990). Comparisons of five health status instruments for orthopedic evaluation. Medical Care 28, 632-642.
Mackenbach, J.P., Karanikolos, M. & McKee, M. (2013). The unequal health of Europeans: successes and failures of policies. Lancet 381, 1125-1134.
Rechel, B., Roberts, B., Richardson, E., Shishkin, S., Shkolnikov, V.M., Leon, D.A., Bobak, M., Karanikolos, M. & McKee, M. (2013). Health and health systems in the Commonwealth of Independent States. Lancet 381, 1145-1155.
DOI: http://dx.doi.org/10.5750/ejpch.v4i1.1076
Refbacks
- There are currently no refbacks.