RESUMEN

BACKGROUND: Heart transplantation is a unique and life-threatening event followed by role and lifestyle adjustments, feelings of dependency, and fears about infections and rejection of the donor heart. Generic quality of life measures are unlikely to cover aspects pertinent to transplant recipients. The disease-specific measures available are lengthy and not feasible for use in clinical practice. AIM: The purpose of the current study was to develop a brief and reliable disease-specific instrument to measure quality of life in heart transplant patients. STUDY DESIGN: Survey. METHODS: The Rotterdam Quality of Life Questionnaire for Heart Transplant Recipients was developed according to a series of steps that included in-depth interviews with heart transplant patients, transcription of interviews to form a comprehensive item pool, reduction of the item pool through submission to a panel of healthcare professionals and transplant patients, and further reduction of the item pool through construct formation and statistical analyses. From July to September 2000, all surviving patients (n=237) following heart transplantation at the Erasmus Medical Centre, Rotterdam were asked to fill in the 55-item questionnaire, 205 (86%) of whom replied. RESULTS: Twelve of the 55 original items were identified as contributing to overall quality of life in heart transplant patients based on four à priori selected constructs. Submission of the 12 items to a factor analysis confirmed that the four-factor structure accounted for 62% of the variance. The reliability of the four subscales was adequate. Mean scores on subscales reflected light to moderate impairment in quality of life. CONCLUSION: The Rotterdam Quality of Life Questionnaire for Heart Transplant Recipients is a brief disease-specific instrument that measures quality of life in heart transplant patients. Although further studies are required to elaborate on the psychometric properties of the scale, the preliminary reliability of the scale looks promising.