- Email: [email protected]
The Experience of Heart Transplant as a Young Adult
S196
The Journal of Heart and Lung Transplantation, Vol 32, No 4S, April 2013
Conclusions: LVAD patients reported higher depression scores and poorer health status compared to HTx recipients at baseline. This suggests the need for active screening and monitoring LVAD patients for distress, and for providing additional care by a mental health professional when needed. 526 Life on the Heart Transplant Waiting List: Life on Hold? Life at All? O. Mauthner,1 J.M. Poole,2 E. De Luca,1 S.E. Abbey,1 M. Shildrick,3 J. Ward,2 M. Gewarges,1 H. Ross.1 1University Health Network, Toronto, Canada; 2Ryerson University, Toronto, Canada; 3Linkoping University, Linkoping, Sweden. Purpose: Patients waiting for heart transplant face real risks of morbidity and mortality. Peer run support groups, Facebooks support site and health care practitioner run information sessions were developed to help patients deal with anxiety and stress whilst waiting. The purpose of this qualitative visual study was to further explore patients’ thoughts and feelings while awaiting a heart transplant. Methods and Materials: Focused open-ended interviews were conducted in a non-clinical setting with 23 patients listed for transplant [52% male, mean age 51.5 9. years; mean 7.4 7.3 months on list]. Interviews were audio/video-taped to capture voice and body language, and were transcribed verbatim. NVivo8 qualitative software was used to code language, bodily gesture, volume and tone in keeping with our qualitative visual methodology. Results: All patients expressed profound feelings of loss. These include: loss of their prior life; control (uncertainty while waiting); autonomy (relying on others); and independence (loss of drivers’ license). Many cited being unable to work and the resulting financial strain as a major burden. Uncertainty about where patients are ‘on the list’ and the likelihood of transplant were frequently reported. The majority of patients on mechanical support as bridge to transplant had a positive outlook towards achieving transplant compared to only a few of the patients not on mechanical support. Conclusions: Despite existing support strategies to assist patients on the heart transplant waiting list, they uniformly express a sense of loss. Patients on mechanical support were more likely to feel hopeful that the transplant would happen, seeing the device as a ‘safety net’. Interestingly loss of work was frequently cited as a major issue, yet reports have documented that return to work rates post heart transplant recipients remain low. Re-evaluating strategies to improve support for patients waiting are needed. 527 The Experience of Heart Transplant as a Young Adult R. Waldron,1 C. Murray,1 Z. Malpus,2 V. Shearing,3 M. Sanchez.4 1 Faculty of Health & Medicine, Lancaster University, Lancaster, United Kingdom; 2University Hospital of South Manchester NHS Foundation Trust, Manchester, United Kingdom; 3Papworth Hospital NHS Foundation Trust, Cambridge, United Kingdom; 4Royal Brompton & Harefield NHS Foundation Trust, Harefield, United Kingdom. Purpose: End stage heart failure and heart transplant present numerous challenges for individuals, but the question of managing these at different stages of the life cycle has been largely overlooked. Young adulthood is proposed as a time of continuing identity, relationship and career development, presenting additional challenges for those requiring heart transplants during this stage. Young adults also face higher likelihood of organ rejection following transplant. In the context of limited prior research, the aim of this study was to explore the experience of heart transplant in nine young adults (aged 19-30) across three transplant services. Methods and Materials: Participants engaged in semi-structured interviews at either their home or transplant hopsital. Given the exploratory nature of the research, a qualitative method, interpretative phenomenological analysis (IPA), was used. IPA was chosen as it has been widely use to study experiences of physical illness. It allowed the researcher to focus on the sense participants made of their experiences,
both individually and collectively, and managed the impact of the researcher within the analysis process. Results: IPA resulted in the development of three themes. ‘Keeping illness at a distance’ and ‘Working toward normality’ described young adults’ efforts to manage the impact of transplant on their lives, which was not reported to restrict adjustment or promote non-adherence. The third theme ‘living with difference’ described the ways in which being a transplant recipient challenged developmental tasks (e.g. career development) and expectations (e.g. illness being more typical in later life), and the isolation of this group. Conclusions: In general these participants navigated the challenges of the transplant process successfully, though they continued to struggle with differences (e.g. living with a shortened life expectancy) associated with being a transplant recipient. This understanding of experiences may support professionals working with young adult heart transplant recipients and highlights the need for further research. 528 Health-Related Quality of Life among Patients with Mechanical Circulatory Assistance: Clinician Perspectives K.L. Grady,1 S. Magasi,2 S. Buono,2 T. Abraham,1 C. Yancy,3 E.McGee Jr.1 1Surgery, Division of Cardiac Surgery, Northwestern University, Chicago, IL; 2Medical Social Sciences, Northwestern University, Chicago, IL; 3Medicine, Division of Cardiology, Northwestern University, Chicago, IL. Purpose: There is a lack of validated outcome measures that assess health-related quality of life (HRQOL) among patients with mechanical circulatory support (MCS). The purpose of this qualitative study was to obtain health care clinicians’ perspectives on factors that influence HRQOL, both positively and negatively, among advanced heart failure patients with MCS. Methods and Materials: We conducted semi-structured qualitative interviews with 15 clinicians who provide care to MCS patients (including 3 cardiac surgeons, 3 cardiologists, 2 palliative care physicians, 3 ventricular assist device coordinators, 2 social workers, and 2 psychologists). Interviews lasted 30-60 minutes, were audiorecorded, and transcribed verbatim. Data were analyzed using a 2phase strategy of descriptive and thematic coding. Results: Clinicians described a wide range of issues that impact on HRQOL of patients with MCS. Clinicians identified positive outcomes: improved physical function, decreased symptom burden, and increased life expectancy, often described as ‘‘the gift of time.’’ Importantly, clinicians identified negative outcomes related to the emotional impact of MCS: loss of independence and autonomy, uncertainty about the future, and concerns about being a burden to loved ones. Disturbed role performance and anxiety about device management were identified as problems in the early post-implant phase but tended to resolve over time. Finally, clinicians indicated that a small subset of patients, typically those with device-related complications, expressed regret over their decision to receive a device. Conclusions: HRQOL among patients with MCS is a multidimensional construct that includes symptom burden, physical function and role performance, and emotional and relational impact. Clinicians indicated that MCS can have both a positive and negative impact on HRQOL. These findings indicate the necessity of developing a measure of HRQOL for patients with MCS. This will be done by triangulating clinician interviews with patient and caregiver interviews. 529 Gender Differences in Health-Related Quality of Life and Adherence 5 Years after Heart Transplantation K.L. Grady,1 A.-C. Andrei,1 Z. Li,1 B. Rybarczyk,2 C. White-Williams,3 R. Gordon,1 E.McGee Jr.1 1Surgery / Division of Cardiac Surgery, Northwestern University, Chicago, IL; 2Psychology, Virginia Commonwealth University, Richmond, VA; 3Nursing, University of Alabama Medical Center, Birmingham, AL. Purpose: There is a paucity of research on the effect of gender on outcomes after heart transplantation (HT). The purpose of our study
The Journal of Heart and Lung Transplantation, Vol 32, No 4S, April 2013
Conclusions: LVAD patients reported higher depression scores and poorer health status compared to HTx recipients at baseline. This suggests the need for active screening and monitoring LVAD patients for distress, and for providing additional care by a mental health professional when needed. 526 Life on the Heart Transplant Waiting List: Life on Hold? Life at All? O. Mauthner,1 J.M. Poole,2 E. De Luca,1 S.E. Abbey,1 M. Shildrick,3 J. Ward,2 M. Gewarges,1 H. Ross.1 1University Health Network, Toronto, Canada; 2Ryerson University, Toronto, Canada; 3Linkoping University, Linkoping, Sweden. Purpose: Patients waiting for heart transplant face real risks of morbidity and mortality. Peer run support groups, Facebooks support site and health care practitioner run information sessions were developed to help patients deal with anxiety and stress whilst waiting. The purpose of this qualitative visual study was to further explore patients’ thoughts and feelings while awaiting a heart transplant. Methods and Materials: Focused open-ended interviews were conducted in a non-clinical setting with 23 patients listed for transplant [52% male, mean age 51.5 9. years; mean 7.4 7.3 months on list]. Interviews were audio/video-taped to capture voice and body language, and were transcribed verbatim. NVivo8 qualitative software was used to code language, bodily gesture, volume and tone in keeping with our qualitative visual methodology. Results: All patients expressed profound feelings of loss. These include: loss of their prior life; control (uncertainty while waiting); autonomy (relying on others); and independence (loss of drivers’ license). Many cited being unable to work and the resulting financial strain as a major burden. Uncertainty about where patients are ‘on the list’ and the likelihood of transplant were frequently reported. The majority of patients on mechanical support as bridge to transplant had a positive outlook towards achieving transplant compared to only a few of the patients not on mechanical support. Conclusions: Despite existing support strategies to assist patients on the heart transplant waiting list, they uniformly express a sense of loss. Patients on mechanical support were more likely to feel hopeful that the transplant would happen, seeing the device as a ‘safety net’. Interestingly loss of work was frequently cited as a major issue, yet reports have documented that return to work rates post heart transplant recipients remain low. Re-evaluating strategies to improve support for patients waiting are needed. 527 The Experience of Heart Transplant as a Young Adult R. Waldron,1 C. Murray,1 Z. Malpus,2 V. Shearing,3 M. Sanchez.4 1 Faculty of Health & Medicine, Lancaster University, Lancaster, United Kingdom; 2University Hospital of South Manchester NHS Foundation Trust, Manchester, United Kingdom; 3Papworth Hospital NHS Foundation Trust, Cambridge, United Kingdom; 4Royal Brompton & Harefield NHS Foundation Trust, Harefield, United Kingdom. Purpose: End stage heart failure and heart transplant present numerous challenges for individuals, but the question of managing these at different stages of the life cycle has been largely overlooked. Young adulthood is proposed as a time of continuing identity, relationship and career development, presenting additional challenges for those requiring heart transplants during this stage. Young adults also face higher likelihood of organ rejection following transplant. In the context of limited prior research, the aim of this study was to explore the experience of heart transplant in nine young adults (aged 19-30) across three transplant services. Methods and Materials: Participants engaged in semi-structured interviews at either their home or transplant hopsital. Given the exploratory nature of the research, a qualitative method, interpretative phenomenological analysis (IPA), was used. IPA was chosen as it has been widely use to study experiences of physical illness. It allowed the researcher to focus on the sense participants made of their experiences,
both individually and collectively, and managed the impact of the researcher within the analysis process. Results: IPA resulted in the development of three themes. ‘Keeping illness at a distance’ and ‘Working toward normality’ described young adults’ efforts to manage the impact of transplant on their lives, which was not reported to restrict adjustment or promote non-adherence. The third theme ‘living with difference’ described the ways in which being a transplant recipient challenged developmental tasks (e.g. career development) and expectations (e.g. illness being more typical in later life), and the isolation of this group. Conclusions: In general these participants navigated the challenges of the transplant process successfully, though they continued to struggle with differences (e.g. living with a shortened life expectancy) associated with being a transplant recipient. This understanding of experiences may support professionals working with young adult heart transplant recipients and highlights the need for further research. 528 Health-Related Quality of Life among Patients with Mechanical Circulatory Assistance: Clinician Perspectives K.L. Grady,1 S. Magasi,2 S. Buono,2 T. Abraham,1 C. Yancy,3 E.McGee Jr.1 1Surgery, Division of Cardiac Surgery, Northwestern University, Chicago, IL; 2Medical Social Sciences, Northwestern University, Chicago, IL; 3Medicine, Division of Cardiology, Northwestern University, Chicago, IL. Purpose: There is a lack of validated outcome measures that assess health-related quality of life (HRQOL) among patients with mechanical circulatory support (MCS). The purpose of this qualitative study was to obtain health care clinicians’ perspectives on factors that influence HRQOL, both positively and negatively, among advanced heart failure patients with MCS. Methods and Materials: We conducted semi-structured qualitative interviews with 15 clinicians who provide care to MCS patients (including 3 cardiac surgeons, 3 cardiologists, 2 palliative care physicians, 3 ventricular assist device coordinators, 2 social workers, and 2 psychologists). Interviews lasted 30-60 minutes, were audiorecorded, and transcribed verbatim. Data were analyzed using a 2phase strategy of descriptive and thematic coding. Results: Clinicians described a wide range of issues that impact on HRQOL of patients with MCS. Clinicians identified positive outcomes: improved physical function, decreased symptom burden, and increased life expectancy, often described as ‘‘the gift of time.’’ Importantly, clinicians identified negative outcomes related to the emotional impact of MCS: loss of independence and autonomy, uncertainty about the future, and concerns about being a burden to loved ones. Disturbed role performance and anxiety about device management were identified as problems in the early post-implant phase but tended to resolve over time. Finally, clinicians indicated that a small subset of patients, typically those with device-related complications, expressed regret over their decision to receive a device. Conclusions: HRQOL among patients with MCS is a multidimensional construct that includes symptom burden, physical function and role performance, and emotional and relational impact. Clinicians indicated that MCS can have both a positive and negative impact on HRQOL. These findings indicate the necessity of developing a measure of HRQOL for patients with MCS. This will be done by triangulating clinician interviews with patient and caregiver interviews. 529 Gender Differences in Health-Related Quality of Life and Adherence 5 Years after Heart Transplantation K.L. Grady,1 A.-C. Andrei,1 Z. Li,1 B. Rybarczyk,2 C. White-Williams,3 R. Gordon,1 E.McGee Jr.1 1Surgery / Division of Cardiac Surgery, Northwestern University, Chicago, IL; 2Psychology, Virginia Commonwealth University, Richmond, VA; 3Nursing, University of Alabama Medical Center, Birmingham, AL. Purpose: There is a paucity of research on the effect of gender on outcomes after heart transplantation (HT). The purpose of our study