- Email: [email protected]
Development of the VAD-QOL: a vad specific quality of life questionnaire
The Journal of Heart and Lung Transplantation Volume 23, Number 2S
Results: 1) The analysis of WHO/QOL26 showed the improvement of the average of QOL score in all patients (2.02 before HTx, 3.60 after HTx), however, patients who originally had skeletal muscle disease and congenital heart disease as the underlying disease showed lower improvement of QOL than others. 2) The analysis of SF-36 showed the improvement of PCS in all patients (-1.25 before HTx, 48.0 after HTx), while 5 patients showed no improvement in MCS (44.6 before HTx, 40.1 after HTx). 2 of these 5 patients originally had skeletal muscle disease and remaining 3 patients were housewives. 3) Exercise tolerability (% peak VO2) after HTx was correlated to the change of WHO/QOL26 from before to after HTx (R ⫽ 0.66), especially physical domain (R ⫽ 0.81), and also correlated to the change of MCS in SF-36 (R ⫽ 0.85). Conclusion: It is useful to evaluate QOL after HTx by using both WHO/QOL26 and SF-36. Post-HTx QOL and exercise tolerability are influenced by each other, and the underlying disease before HTx and the employment status after HTx contribute to post-HTx QOL.
275 A RANDOMIZED EVALUATION OF A TELEHEALTH INTERVENTION TO IMPROVE WELL-BEING, MOOD STATES, AND SOCIAL INTIMACY IN WAIT-LISTED LUNG TRANSPLANT PATIENTS J.R. Rodrigue,1 M.A. Baz,2 M.R. Widows,1 S.L. Ehlers,1 1Clinical and Health Psychology, University of Florida, Gainesville, FL; 2 Medicine, University of Florida, Gainesville, FL Objective: Studies show that adults awaiting lung transplantation experience significant decline in quality of life and psychological functioning. Also, when left untreated, such poor quality of wellbeing and psychological distress may lead to poorer outcomes after transplantation. For these reasons, developing interventions to enhance well-being is crucial for patients with end-stage disease awaiting transplantation. This study evaluated the effectiveness of Quality of Life Therapy (QoLT) versus Supportive Therapy (ST) in improving well-being, mood states, and social intimacy in adults awaiting lung transplantation. Method: Upon providing informed consent, 20 adults wait-listed for lung transplantation at the University of Florida were randomly assigned to receive one of the two study interventions. In the QoLT condition, treatment sessions targeted specific deficits in quality of well-being. In the ST condition, the primary goal was to provide the patient with emotional and educational support. Treatment was delivered via telephone and lasted 8 to 12 weeks. Primary outcomes were quality of life, mood states, and social intimacy, which were obtained at baseline and at 1 and 3 months following treatment. Results: Multivariate analyses of covariance showed that patients receiving QoLT had significantly more improvements in quality of well-being (F ⫽ 5.32, P ⬍ .05) and social intimacy (F ⫽ 7.24, P ⬍ .05) at both follow-up assessments, when compared to patients receiving ST. There was no between-group difference in mood at the 1 month follow-up, as both groups showed significant improvements in mood from baseline; however, these gains were maintained only for those in the QoLT condition 3 months after treatment. Conclusions: Results suggest that QoLT may be an effective intervention for improving the perceived well-being, mood states, and social intimacy of patients who are awaiting lung transplantation.
276 DEVELOPMENT OF THE VAD-QOL: A VAD SPECIFIC QUALITY OF LIFE QUESTIONNAIRE
Abstracts
S135
C.N. Hallas,1 J. Wray,1 C. Bowles,2 N.R. Banner,1 1Transplant Unit, Harefield Hopsital, Harefield, Middlesex, United Kingdom; 2 Artificial Heart Programme Co-ordinator, Harefield Hospital, Harefield, Middlesex, United Kingdom Rationale: Increasing numbers of patients are receiving Ventricular Assist Devices (VADs) to facilitate survival to cardiac transplant or as a bridge to myocardial recovery. Recent research has shown that VAD patients’ experience more psychological difficulties and social limitations than explanted or transplanted patients. However, existing generic QoL measure do not capture the particular characteristics, problems and mechanics of living with an VAD. Therefore it became apparent that an VAD specific measure of QoL was required. Method: A two phase study was designed to construct and pilot such a measure. The first phase of the study involved administering a battery of psychometric questionnaire to all patients (22 out of 24 completed questionnaires) who either had an VAD in situ (Heart Mate I/ Thoratec devices; mean ⫽ 9.7 months, SD ⫽ 6.8 months) or who had been transplanted/explanted. 18 men and 4 women (mean ⫽ 42.9 years, SD ⫽ 13.5; range 18 to 60) were recruited. In addition, thirteen interviews were conducted with these patients employing Grounded Theory methodology to determine themes and concepts related to QoL. Results: VAD patients experienced significant levels of anxiety and depression, social limitations and poor physical QoL. The main themes related to QoL were perceived control, normality, uncertainty, emotional state and the VAD technology and its novelty. Based on these results the second phase of the study involving the design of a VAD specific measure was implemented. A fifteen item QoL measure (VAD-QoL), incorporating both positively and negatively loaded questions was constructed with a five point Likert scoring system. All of the themes were included in the questionnaire design. The questionnaire is currently being piloted in a longitudinal UK study of VADs as a bridge to transplantation. Conclusion: Results from phase one have indicated that generic measures of QoL with VAD populations are inadequate to assess the complexity of living with VAD technology. Early indications are that our measure has face validity and is relevant, practical and acceptable to VAD patients. 277 TWO-YEAR FOLLOW-UP OF PSYCHOLOGICAL STATE IN PATIENTS REFERRED FOR HEART TRANSPLANT L.S. Evangelista,1 K. Dracup,2 C. Westlake,3 V. Erickson,1 M.A. Hamilton,4 G.C. Fonarow,4 1School of Nursing, University of California, Los Angeles, Los Angeles, CA; 2School of Nursing, University of California, San Francisco, San Francisco, CA; 3 School of Nursing, California State University, Fullerton, Fullerton, CA; 4School of Medicine, University of California, Los Angeles, Los Angeles, CA Assessment of psychological state has become one of the ultimate tests of quality of care for patients with advanced heart failure (HF). Little is known, however, about the effects of time and treatment on the psychological state of these chronically ill patients. Methods: We examined 77 patients (74% male), aged 56.1 ⫾ 12.7 years who were referred for transplant evaluation at a single HF center to describe the effects of time and treatment status on changes in psychological scores at two time points during their illness trajectory. The two evaluations on average were two years apart. All patients were evaluated at baseline, and the 3 groups were identified at the time of the 2-year follow-up: transplant recipients, transplant candidates, and medically stable patients considered too well to transplant.
Results: 1) The analysis of WHO/QOL26 showed the improvement of the average of QOL score in all patients (2.02 before HTx, 3.60 after HTx), however, patients who originally had skeletal muscle disease and congenital heart disease as the underlying disease showed lower improvement of QOL than others. 2) The analysis of SF-36 showed the improvement of PCS in all patients (-1.25 before HTx, 48.0 after HTx), while 5 patients showed no improvement in MCS (44.6 before HTx, 40.1 after HTx). 2 of these 5 patients originally had skeletal muscle disease and remaining 3 patients were housewives. 3) Exercise tolerability (% peak VO2) after HTx was correlated to the change of WHO/QOL26 from before to after HTx (R ⫽ 0.66), especially physical domain (R ⫽ 0.81), and also correlated to the change of MCS in SF-36 (R ⫽ 0.85). Conclusion: It is useful to evaluate QOL after HTx by using both WHO/QOL26 and SF-36. Post-HTx QOL and exercise tolerability are influenced by each other, and the underlying disease before HTx and the employment status after HTx contribute to post-HTx QOL.
275 A RANDOMIZED EVALUATION OF A TELEHEALTH INTERVENTION TO IMPROVE WELL-BEING, MOOD STATES, AND SOCIAL INTIMACY IN WAIT-LISTED LUNG TRANSPLANT PATIENTS J.R. Rodrigue,1 M.A. Baz,2 M.R. Widows,1 S.L. Ehlers,1 1Clinical and Health Psychology, University of Florida, Gainesville, FL; 2 Medicine, University of Florida, Gainesville, FL Objective: Studies show that adults awaiting lung transplantation experience significant decline in quality of life and psychological functioning. Also, when left untreated, such poor quality of wellbeing and psychological distress may lead to poorer outcomes after transplantation. For these reasons, developing interventions to enhance well-being is crucial for patients with end-stage disease awaiting transplantation. This study evaluated the effectiveness of Quality of Life Therapy (QoLT) versus Supportive Therapy (ST) in improving well-being, mood states, and social intimacy in adults awaiting lung transplantation. Method: Upon providing informed consent, 20 adults wait-listed for lung transplantation at the University of Florida were randomly assigned to receive one of the two study interventions. In the QoLT condition, treatment sessions targeted specific deficits in quality of well-being. In the ST condition, the primary goal was to provide the patient with emotional and educational support. Treatment was delivered via telephone and lasted 8 to 12 weeks. Primary outcomes were quality of life, mood states, and social intimacy, which were obtained at baseline and at 1 and 3 months following treatment. Results: Multivariate analyses of covariance showed that patients receiving QoLT had significantly more improvements in quality of well-being (F ⫽ 5.32, P ⬍ .05) and social intimacy (F ⫽ 7.24, P ⬍ .05) at both follow-up assessments, when compared to patients receiving ST. There was no between-group difference in mood at the 1 month follow-up, as both groups showed significant improvements in mood from baseline; however, these gains were maintained only for those in the QoLT condition 3 months after treatment. Conclusions: Results suggest that QoLT may be an effective intervention for improving the perceived well-being, mood states, and social intimacy of patients who are awaiting lung transplantation.
276 DEVELOPMENT OF THE VAD-QOL: A VAD SPECIFIC QUALITY OF LIFE QUESTIONNAIRE
Abstracts
S135
C.N. Hallas,1 J. Wray,1 C. Bowles,2 N.R. Banner,1 1Transplant Unit, Harefield Hopsital, Harefield, Middlesex, United Kingdom; 2 Artificial Heart Programme Co-ordinator, Harefield Hospital, Harefield, Middlesex, United Kingdom Rationale: Increasing numbers of patients are receiving Ventricular Assist Devices (VADs) to facilitate survival to cardiac transplant or as a bridge to myocardial recovery. Recent research has shown that VAD patients’ experience more psychological difficulties and social limitations than explanted or transplanted patients. However, existing generic QoL measure do not capture the particular characteristics, problems and mechanics of living with an VAD. Therefore it became apparent that an VAD specific measure of QoL was required. Method: A two phase study was designed to construct and pilot such a measure. The first phase of the study involved administering a battery of psychometric questionnaire to all patients (22 out of 24 completed questionnaires) who either had an VAD in situ (Heart Mate I/ Thoratec devices; mean ⫽ 9.7 months, SD ⫽ 6.8 months) or who had been transplanted/explanted. 18 men and 4 women (mean ⫽ 42.9 years, SD ⫽ 13.5; range 18 to 60) were recruited. In addition, thirteen interviews were conducted with these patients employing Grounded Theory methodology to determine themes and concepts related to QoL. Results: VAD patients experienced significant levels of anxiety and depression, social limitations and poor physical QoL. The main themes related to QoL were perceived control, normality, uncertainty, emotional state and the VAD technology and its novelty. Based on these results the second phase of the study involving the design of a VAD specific measure was implemented. A fifteen item QoL measure (VAD-QoL), incorporating both positively and negatively loaded questions was constructed with a five point Likert scoring system. All of the themes were included in the questionnaire design. The questionnaire is currently being piloted in a longitudinal UK study of VADs as a bridge to transplantation. Conclusion: Results from phase one have indicated that generic measures of QoL with VAD populations are inadequate to assess the complexity of living with VAD technology. Early indications are that our measure has face validity and is relevant, practical and acceptable to VAD patients. 277 TWO-YEAR FOLLOW-UP OF PSYCHOLOGICAL STATE IN PATIENTS REFERRED FOR HEART TRANSPLANT L.S. Evangelista,1 K. Dracup,2 C. Westlake,3 V. Erickson,1 M.A. Hamilton,4 G.C. Fonarow,4 1School of Nursing, University of California, Los Angeles, Los Angeles, CA; 2School of Nursing, University of California, San Francisco, San Francisco, CA; 3 School of Nursing, California State University, Fullerton, Fullerton, CA; 4School of Medicine, University of California, Los Angeles, Los Angeles, CA Assessment of psychological state has become one of the ultimate tests of quality of care for patients with advanced heart failure (HF). Little is known, however, about the effects of time and treatment on the psychological state of these chronically ill patients. Methods: We examined 77 patients (74% male), aged 56.1 ⫾ 12.7 years who were referred for transplant evaluation at a single HF center to describe the effects of time and treatment status on changes in psychological scores at two time points during their illness trajectory. The two evaluations on average were two years apart. All patients were evaluated at baseline, and the 3 groups were identified at the time of the 2-year follow-up: transplant recipients, transplant candidates, and medically stable patients considered too well to transplant.