Microsoft Word - HEART FAILURE 2010FINAL

HRQoL Health-related Quality of Life ICD Implantable cardioverter defibrillator ICC Intraclass correlation coefficient KCCQ[-os] Kansas City Cardiomyopathy Questionnaire[-overall summary score] LVAD Left ventricular assist device [LV]EF [Left ventricular] ejection fraction LV[S]D Left ventricular [systolic] dysfunction MADIT Multicenter Automatic Defibrillator Implantation Trial [M]CID [Minimum] Clinically important difference MCS Mental Component Summary (of the SF-36 and related measures) Aims of the report The aims of this report are to review the evidence of patient-reported outcome measures (PROMs) for people with heart failure and to provide recommendations to the Department of Health of PROMs for heart failure that could potentially be used on a large scale population basis, combining good measurement properties with the likelihood of modest burden to respondents in order not to jeopardise response rates. A literature review of relevant PROMs resulted in the identification of a shortlist of both generic and heart failure-specific instruments which were then presented to a multidisciplinary panel for discussion. The literature review of the evidence-base and the discussions of the multidisciplinary panel underpin final recommendations to the Department of Health. The Patient-reported Outcome Measurement Group previously submitted a report to the Department of Health of evidence of Patient-reported Outcome Measures (PROMs) for chronic conditions (Fitzpatrick et al., 2006). The report included a review of evidence regarding PROMs for heart failure with some recommendations 1. The methods of the review are described and the results of the search including sources and search terms used to identify specific published research. Details of this updated evidence are presented firstly for generic PROMs evaluated with people with heart failure, followed by heart failure-specific PROM results. The report concludes with discussion and recommendations. Results and shortlist of PROMs for people with heart failure The previous review reported evidence for the following generic PROMs: a) EQ-5D b) SF-36 c) SF-12 d) Sickness Impact Profile (SIP) This update identified further evidence of performance for all of these instruments. An individualised measure, the Patient Generated Index (PGI), and an additional generic PROM, the SF-8, were identified with reporting of some evidence of performance. Four heart failure-specific instruments were previously identified: a) Chronic Heart Failure Questionnaire (CHQ) b) Kansas City Cardiomyopathy Questionnaire (KCCQ) c) MacNew (ex-QLMI: Quality of Life after Myocardial Infarction Questionnaire) d) Minnesota Living with Heart Failure Questionnaire (MLHFQ