159 Quality of Life in Pediatric Heart Transplant Recipients: A Comparison with Children with and without Heart Disease

159 Quality of Life in Pediatric Heart Transplant Recipients: A Comparison with Children with and without Heart Disease

Abstracts S59 Index, HT Symptom Checklist, Sickness Impact Profile, Cardiac Depression Scale, Panas-X, HT Stressor Scale, Jalowiec Coping Scale, Soc...

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Abstracts

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Index, HT Symptom Checklist, Sickness Impact Profile, Cardiac Depression Scale, Panas-X, HT Stressor Scale, Jalowiec Coping Scale, Social Support Index, and Assessment of Problems with the HT Regimen. Statistical analyses included descriptive statistics and Cox Proportional Hazard Modeling. Results: Overall, HT pts (n⫽555) were 78% male, 88% white, 79% married, 59% with ⬎ a high school education, and mean age at HT⫽54 years. 10% (n⫽55) of pts died during the 5-10 year follow-up period. Variables that were significantly predictive of an increased risk of mortality in the multivariable model included: less education, being married, less satisfaction with socio-economic areas of life, NYHA class 3 or 4, cardiovascular and hematologic complications, more infections, and less compliance with the HT regimen. Conclusions: Demographic, QOL, and behavioral factors, as well as clinical factors, were associated with an increased risk of mortality from 5 to 10 years after HT. These factors have implications regarding pt selection and post HT recipient management, including self-care. Table Predictors of Mortality at 5 - 10 years after HT

Variable

95% Hazard confidence ratio intervals

p-value

Education (yrs) Marital status Socio-economic satisfaction

0.84 2.96 0.05

0.007 0.032 0.030

NYHA 1 (vs. NYHA 3 or 4) NYHA 2 (vs. NYHA 3 or 4) Cardiovascular complications Hematologic complications

0.18 0.19 0.51 0.47

Number of infections High level of compliance (vs. Low) Moderate level of compliance (vs. Low)

1.32 0.26 0.34

0.74 - 0.95 1.10 - 8.00 0.003 0.75 0.04 - 0.89 0.04 - 0.96 0.27 - 0.98 0.22 1.003 1.09 - 1.60 0.08 - 0.81 0.14 - 0.79

0.035 0.044 0.044 0.051 0.005 0.020 0.012

157 Are Social Support and Coping Mediators of Quality of Life (QOL) Long-Term after Heart Transplantation (HT)? C. White-Williams1, S. Myers,1 D. Naftel,1 R. Bourge,1 K. Grady.1,2 1 University of Alabama at Birmingham, Birmingham; 2Northwestern University, Chicago. Purpose: Information on the relationships among social support (SS), stress, and coping with QOL long-term after HT is unknown. The purpose of this study was to examine if SS and coping mediate the relationship between stress and QOL 5 years after HT. Methods and Materials: Data were collected from 212 HT pts (78% male, 88% white, mean age 53.8yrs) at 4 U.S. sites using the following instruments: HT SS Index, Jalowiec Coping Scale, HT Stressor Scale, and QOL Index. Statistical analyses included central tendencies and Baron and Kenny’s series of regression equations for mediation. Results: In the 1st series of regression equations examining the mediation effect of SS on stress and QOL, SS was related to stress (␤ ⫽ 0.172, p⬍0.0004). There was also an inverse relationship between QOL and stress indicating that subjects with less stress experienced better QOL. Stress explained 36% of variance in QOL (p⬍0.0001). In the final step of the mediation, regressing QOL on the mediator (SS) and the independent variable, (stress), 46% of variance in QOL was explained (p⬍0.0001). The effect of stress was smaller in step 3 [␤ ⫽ ⫺0.453, p⬍0.0001] than in step 2 (␤ ⫽ ⫺0.541, p⬍0.0001); however, it remained significant indicating SS partially mediated the effects of stress on QOL. The 2nd set of regression equations examined the mediating effect of coping on the relationship between stress and QOL. There was an inverse relationship when coping was regressed on stress (␤ ⫽ ⫺0.264, p⫽0.0002). Stress explained 36% of variance in QOL (p⬍0.0001). Coping and stress explained 35% of variance in QOL (p⬍0.0001). Even though the effect of stress (␤ ⫽ ⫺0.432,

p⬍0.0001) was smaller than the effect of coping in step 3, the r2 was less; thus, coping did not mediate the effects of stress on QOL. Conclusions: Less SS is associated with more stress. SS partially mediated the effects of stress on QOL while coping was not a mediator. Understanding the relationships of SS, stress, and coping with patients’ QOL is important for the development of interventions to provide optimal pt care. 158 Palliative Care Involvement in Advanced Heart Failure Pre and Post Cardiac Transplantation E.R.V. Schwarz,1 A. Baraghoush,2 A. Phan,1 M.M. Hamilton,1 J.A. Kobashigawa,1 P. Bharadwaj.3 1Heart Institute, Cedars-Sinai Medical Center, Los Angeles, CA; 2Internal Medicine, Cedars-Sinai Medical Center, Los Angeles, CA; 3Palliative Care, Cedars-Sinai Medical Center, Los Angeles, CA. Purpose: To evaluate the impact of a palliative care (PC) consultation in patients with advanced heart failure (HF). Methods and Materials: I. Data was collected retrospectively to determine 1) symptom(s) at consult 2) reason for a PC consult 3) symptom improvement after involvement of PC. II. Open ended questions were asked to assess impact of PC to a) patient and family b) HF team. III. A non standardized tool using a scoring system from 0-4 was used independently and blindly by two physicians, one from each service, to assess the impact of the PC service. Results: Data of the first 20 patients (pts) referred by the HF service at Cedars Sinai Medical Center to the PC consultation service was analyzed. 18 pts were males and 2 females, with mean age 54.4 (range 19-83). All pts had stage D HF, NYHA class III-IV. Two pts received a successful heart transplant; three pts received an LVAD as destination therapy. BIVAD was placed in one patient as bridge to transplant. Four pts had received a heart transplant in the past. Five pts were not candidates for heart transplantation. Two pts were discharged home on hospice and two pts received end of life care in the hospital. Analysis revealed: 1) PC consult was obtained for a variety of reasons such as symptom management, end of life care planning or hospice referral. 2) There was a high symptom burden, mainly due to pain, dyspnea and fatigue. 3) PC resulted in decreased use of opioids and diuretics. A positive impact of PC was reported by pts, their families, and the HF service. Pts and families reported improved planning of treatment course. The HF service reported improved efficiency. The scores using the non standardized tool revealed: (mean⫾standard deviation) of 3.7⫾0.47 (Cardiologist) and 3.75⫾0.55 (PC physician). Conclusions: PC consultation has been shown to be beneficial for the clinical outcome in pts with heart failure, independent of short term prognosis. Involvement of PC should be independent of prognosis and treatment goals and should represent standard of care in patients with advanced stages of heart failure. 159 Quality of Life in Pediatric Heart Transplant Recipients: A Comparison with Children with and without Heart Disease K. Uzark,1 J.K. Johnston,2 M. Zamberlan,3 P. Murphy,4 C. Nasman,5 J. Dupuis,6 S. Rodgers,7 C. Limbers,8 J.W. Varni.9 1Cincinnati Children’s Hospital Medical Ctr, Cincinnati, OH; 2Loma Linda University; 3Cardiology, University of Michigan Medical Ctr, Ann Arbor, MI; 4St Louis Children’s Hospital, St Louis, MO; 5Cleveland Clinic Foundation, Cleveland, OH; 6Children’s Hospital of Michigan, Detroit, MI; 7Children’s Memorial Hospital, Chicago, IL; 8Psychology and Neuroscience, Baylor University, Waco, TX; 9Texas A & M University, College Station, TX. Purpose: Little is known about the quality of life (QOL) of children with heart disease (HD) who undergo life-saving surgery. In this multicenter study, our aim was to examine self- and parent-reported QOL outcomes in pediatric heart transplant (HTx) recipients in comparison to children post conventional cardiac surgery (CS) and a healthy age-matched comparison group. Methods and Materials: The Pediatric Quality of Life Inventory Core and Cardiac Module were administered to 174 HTx recipients (mean age 10.6 ⫹ 4.7 yrs) at a mean follow-up time ⫽ 6.0 yrs. Median age at HTx was 2 yrs, range 4 days - 17.8 yrs. There was no significant difference in age between the groups or follow-up time since surgery in HTx and CS groups. Within the CS

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The Journal of Heart and Lung Transplantation, Vol 30, No 4S, April 2011

group, severity of HD/surgery was categorized as mild/corrective, moderate/ residua or need for future surgery, or complex/palliated. Results: By self-report, mean physical and psychosocial QOL scores in HTx were significantly lower than healthy (p⬍.001) or mild CS (p⬍.01) groups, however, the HTx group had significantly fewer symptoms than children with CS, p⬍.01. Among psychosocial scales, school QOL was significantly lower in the HTx group than the overall CS (p⬍.01) and healthy groups (p⬍.01). HTx cognitive problem scores were not significantly different from moderate or complex CS groups. By self-report, there were no significant differences in emotional and social QOL between the HTx and CS groups. By parent-report, HTx mean physical and psychosocial QOL scores were significantly lower than the healthy group (p⬍.001), but physical QOL was significantly better than the severe CS group (p⬍.01) and symptoms significantly less than all CS groups. HTx parents reported lower school QOL than CS and healthy groups (p⬍.001) and lower social QOL than CS patients. Conclusions: While pediatric HTx recipients experience significant symptomatic improvement, they remain at risk for impaired psychosocial QOL similar to children with residual or palliated heart disease, especially related to school QOL. 160 Assessment of Quality of Care in Lung Transplant Patients M.J. Santana,1 D. Feeny,2 S. Ghosh,3 D. Lien.1 1Lung Transplant Program, University of Alberta Hospital, Edmonton, AB, Canada; 2The Center for Health Research, Kaiser Permanente Northwest, Portland, OR; 3Biostatistics, Cross Cancer Institute, Edmonton, AB, Canada. Purpose: Health care providers are interested in assessing quality of care. Patient assessments of health care provide important information about how well health care providers meet the needs of their patients. The present study examine whether patients assessments of health care varied by transplant status, education, age and gender using Consumer Assessment of Health Plans Study Clinician and Group Survey (CAHPS®). Methods and Materials: Consecutive pre- and post-lung transplant patients attending the lung transplant outpatient clinic in a tertiary institution completed the CAHPS®. CAHPS® focuses on physician-patient communication and care management. This survey contains 38 items including one global rating about the patient’s personal doctor on a 0 to 10 rating scale. The questions are grouped into three composites: access (getting care quickly, getting needed care), provider (communication skills, shared decision making, knowledge of medical history), and provider’s office staff (follow-up on test results, courtesy/respect, and helpfulness). Data were analyzed using linear regression models. The dependent variables were CAHPS® global rating (best to worst doctor) and two composites created assessing doctors’ and nurses’ communication skills and shared decision making. The independent variables were patients’ transplant status (preand post-transplant) gender, age, education and self-rated health. Results: Two hundred and thirteen patients (105 pre- and 108 post-transplant) mean age 53 of whom 50% were female and 48% had high school education completed CAHPS® from July 2005 through September 2006. Females pre-transplant patients with poor self-health rate and low education level (p⫽0.05; p⫽0.05; p⫽0.03; p⫽0.01 respectively) tended to report lower scores when assessing doctors’ and nurses’ communication skills and shared decision making. Conclusions: This study identifies a group of patients that perceived difficulties in communicating with their doctors and nurses. In order to maximize quality of care the observed disparities should be addressed. 161 Elevated Risk for Psychiatric Morbidity after Lung Transplantation M.A. Dew,1 A.F. DiMartini,2 A.J. DeVito Dabbs,3 K.R. Fox,4 G.E. Switzer,5 D.M. Posluszny,6 L. Myaskovsky,5 R.A. Zomak,7 R.L. Kormos,8 Y.N. Toyoda.8 1Psychiatry, Epidemiology and Biostatistics, University of Pittsburgh School of Medicine, Pittsburgh, PA; 2Psychiatry and Surgery, University of Pittsburgh School of Medicine, Pittsburgh, PA; 3Acute and Tertiary Care Nursing, University of Pittsburgh School of Nursing, Pittsburgh, PA; 4Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, PA; 5Medicine and Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, PA;

6

Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA; Cardiothoracic Transplantation Program, University of Pittsburgh Medical Center, Pittsburgh, PA; 8Heart, Lung and Esophageal Institute, University of Pittsburgh Medical Center, Pittsburgh, PA. 7

Purpose: Mental health is a critical component of posttransplant quality of life. However, in contrast to substantial data on psychiatric morbidity after heart, kidney and liver transplant, rates and risk factors for diagnosable psychiatric disorder post lung transplant (LTX) are unknown. Because anxiety disorders are prominent in chronic lung disease, LTX recipients may be at heightened risk for these disorders. We examined rates of onset and risk factors for anxiety and other DSM-IV disorders during the first 2 years post LTX. Methods and Materials: 178 consecutive LTX recipients, and a comparison group of 126 consecutive heart transplant (HTX) recipients, were enrolled. DSM-IV anxiety (panic disorder, generalized anxiety disorder [GAD], post-traumatic stress disorder related to the transplant [PTSD-T], adjustment disorders) and mood disorders (major depression, adjustment disorders) were determined via research interviews at 2, 7, 12, 18 and 24 mos. posttransplant. Potential risk factors were obtained at initial assessment. Survival analysis determined cumulative incidence rates and risk factor effects. Results: The 2-year incidence of panic disorder was higher (p⬍.05) in LTX than HTX recipients (18% v. 8%), as was adjustment disorder with anxiety (22% v. 14%). LTX and HTX groups did not differ in rates of PTSD-T (15% v. 14%), GAD (4% v. 3%), major depression (30% v. 26%), or adjustment disorder with depression (both at 9%). For both groups, risk factors for any disorder (v. none) included pretransplant psychiatric history, greater physical functional impairment, poorer family caregiver social support, and use of avoidant coping strategies to manage health. Conclusions: LTX recipients are at elevated risk for panic disorder posttransplant, suggesting that transplant programs be vigilant for this problem. LTX recipients’ risk of most other disorders resembles that of other thoracic transplant recipients. Strategies to prevent psychiatric disorder in all thoracic transplant recipients should build on caregiver support and on strengthening recipients’ health-related coping strategies. 162 Medical and Psychosocial Predictors of Mechanical Circulatory Support Device Implantation in the Waiting for a New Heart Study H. Spaderna,1 G. Weidner,2 and the Waiting for a New Heart Study Group. 1Department of Psychology, Johannes Gutenberg-University, Mainz, Germany; 2Department of Biology, San Francisco State University, Tiburon, CA. Purpose: Depression and social isolation at time of waitlisting significantly reduced chances for clinical improvement in the Waiting for a New Heart Study (JHLT, 2010;29:247-52; Transplant Int 2010;23:1223-32). Outcomes examined were death, high urgency transplantation (HU-HTx), elective HTx, delisting due to clinical deterioration, and delisting due to improvement. As mechanical circulatory support device (MCSD) implants have increased, we can now evaluate MCSD as an additional outcome. Methods and Materials: The Waiting for a New Heart Study enrolled 318 newly listed patients (82% male, aged 53⫾11) at 17 German-speaking hospitals, who were followed for a median waiting-time of 316 days (range⫽51682). Predictors at time of listing included questionnaire-based psychosocial (depression, social isolation) and medical risk (e.g., Heart Failure Survival Score [HFSS], pulmonary capillary wedge pressure [PCWP]). Cox models were used to examine the association of medical parameters and psychosocial risk group (low, medium, high) with time until new MCSD implantation, taking into account confounding variables and competing outcomes. Results: During follow-up, 26 patients received a MCSD (14 left, 1 right, 7 bi-ventricular devices, 4 artificial hearts), 47 died, 139 were transplanted (100 in HU status), 14 were delisted due to clinical deterioration, and 30 due to improvement. As expected, MCSD, death, and HU-HTx were associated with greater medical risk (HFSS, PCWP; p-values ⬍.05). In addition, psychosocial risk contributed to time until MCSD (p⬍.04), resulting in 30% of patients with elevated psychosocial risk having received a MCSD. Non-depressed and socially integrated patients did not require any MCSD and were significantly more likely to become delisted due to improvement.