Social and Financial Outcomes of Living Liver Donation: A Prospective Investigation Within the Adult-to-Adult Living Donor Liver Transplantation Cohort Study 2 (A2ALL-2).

Because results from single-center (mostly kidney) donor studies demonstrate interpersonal relationship and financial strains for some donors, we conducted a liver donor study involving nine centers within the Adult-to-Adult Living Donor Liver Transplantation Cohort Study 2 (A2ALL-2) consortium. Among other initiatives, A2ALL-2 examined the nature of these outcomes following donation. Using validated measures, donors were prospectively surveyed before donation and at 3, 6, 12, and 24 mo after donation. Repeated-measures regression models were used to examine social relationship and financial outcomes over time and to identify relevant predictors. Of 297 eligible donors, 271 (91%) consented and were interviewed at least once. Relationship changes were positive overall across postdonation time points, with nearly one-third reporting improved donor family and spousal or partner relationships and >50% reporting improved recipient relationships. The majority of donors, however, reported cumulative out-of-pocket medical and nonmedical expenses, which were judged burdensome by 44% of donors. Lower income predicted burdensome donation costs. Those who anticipated financial concerns and who held nonprofessional positions before donation were more likely to experience adverse financial outcomes. These data support the need for initiatives to reduce financial burden.

Consensus conference on best practices in live kidney donation: recommendations to optimize education, access, and care.

Live donor kidney transplantation is the best treatment option for most patients with late-stage chronic kidney disease; however, the rate of living kidney donation has declined in the United States. A consensus conference was held June 5-6, 2014 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Transplant professionals, patients, and other key stakeholders discussed processes for educating transplant candidates and potential living donors about living kidney donation; efficiencies in the living donor evaluation process; disparities in living donation; and financial and systemic barriers to living donation. We summarize the consensus recommendations for best practices in these educational and clinical domains, future research priorities, and possible public policy initiatives to remove barriers to living kidney donation.

The independent living donor advocate: a guidance document from the American Society of Transplantation's Living Donor Community of Practice (AST LDCOP).

The independent living donor advocate (ILDA) serves a mandated and supportive role in the care of the living organ donor, yet qualifications and role requirements are not clearly defined. Guidance comes from Centers for Medicare and Medicaid Services (CMS) Conditions for Transplant Center Participation and interpretive guidelines, Organ Procurement and Transplantation Network (OPTN) Policy and CMS and OPTN site surveys, yet interpretation of regulations varies. Herein, the AST Living Donor Community of Practice (LDCOP) offers seven recommendations to clarify and optimize the ILDA role: (a) the ILDA must have a certain skill set rather than a specific profession, (b) the ILDA must be educated and demonstrate competence in core knowledge components, (c) the ILDA's primary role is to assess components of informed consent, (d) centers must develop a transparent system to define ILDA independence, (e) the ILDA should have a reporting structure outside the transplant center, (f) the ILDA's role should be integrated throughout the donor care continuum, (g) the ILDA role should include a narrow "veto power." We address controversies in ILDA implementation, and offer pathways to maximize benefits and minimize limitations of approaches that may each meet regulatory requirements but confer different practice benefits. We propose a research agenda to explore the impact of the ILDA.

Solid-organ transplantation in older adults: current status and future research.

An increasing number of patients older than 65 years are referred for and have access to organ transplantation, and an increasing number of older adults are donating organs. Although short-term outcomes are similar in older versus younger transplant recipients, older donor or recipient age is associated with inferior long-term outcomes. However, age is often a proxy for other factors that might predict poor outcomes more strongly and better identify patients at risk for adverse events. Approaches to transplantation in older adults vary across programs, but despite recent gains in access and the increased use of marginal organs, older patients remain less likely than other groups to receive a transplant, and those who do are highly selected. Moreover, few studies have addressed geriatric issues in transplant patient selection or management, or the implications on health span and disability when patients age to late life with a transplanted organ. This paper summarizes a recent trans-disciplinary workshop held by ASP, in collaboration with NHLBI, NIA, NIAID, NIDDK and AGS, to address issues related to kidney, liver, lung, or heart transplantation in older adults and to propose a research agenda in these areas.

Quality of life outcomes in left ventricular assist system inpatients and outpatients.

This study empirically evaluates the quality of life (QOL) effects associated with hospital discharge among heart transplant candidates whose lives are maintained by left ventricular support systems (LVAS). Thirty-five LVAS inpatients (18 Novacor, 17 Thoratec) received structured QOL assessments approximately 1 month after device implant. Ten of the patients (8 Novacor, 2 Thoratec) were subsequently discharged to either home or a home-like outpatient facility where their QOL was reassessed. The QOL of LVAS patients, before and after discharge, was compared with that of demographically similar nonhospitalized heart transplant candidates (n = 55) and recipients (n = 97). Their caregivers' QOL was also assessed. The QOL of LVAS outpatients showed statistically significant (p<0.05) advantages over remaining LVAS inpatients and nonhospitalized heart candidates. Advantages appeared in physical, emotional, and social functioning domains. The QOL of LVAS outpatients also improved (p<0.05) over their own QOL before discharge, with the greatest change in physical functional and emotional status. The QOL of LVAS outpatients most closely resembled QOL in the transplant recipients. Family caregivers to LVAS outpatients reported some increases in caregiving burden after patient discharge, but their overall well being was not adversely affected. These data provide an empiric basis for the provision of outpatient programs as appropriate care for eligible LVAS patients.

Posttraumatic stress disorder and service utilization among urban mental health center clients.

Although the urban poor are at high risk for exposure to trauma, community mental health clinics rarely diagnose clients with PTSD. Failure to diagnose PTSD may undermine the effectiveness of services provided. Our objectives were to (1) assess prevalence of traumatic experiences and PTSD, and (2) examine differences in service utilization between those who had PTSD and those who did not. Interview data were gathered from 181 urban psychiatric outpatients. A substantial number of clients had experienced at least one lifetime trauma (94%), and of those, 42% had PTSD during the past year. Analyses comparing service use between PTSD and nonPTSD clients supported our expectation that clients with PTSD would use more mental health services, and would be less satisfied with services than their nonPTSD counterparts.

Understanding donors' motivations: a study of unrelated bone marrow donors.

Medical advances in bone marrow transplantation techniques and immunosuppressive medications have dramatically increased the number of such transplants performed each year, and consequently, the demand for bone marrow from unrelated donors. Although physiological aspects of bone marrow donation have been thoroughly investigated, very few studies have examined psychosocial factors that may impact individuals' donation decisions and outcomes. To examine one particular set of donor psychosocial issues, this study investigated motives for bone marrow donation among 343 unrelated bone marrow donors who donated through the National Marrow Donor Program. Six distinct types of donor motives were identified from open-ended questionnaire responses. Donors most frequently reported motives reflecting some awareness of both the costs (to themselves) and potential benefits (to themselves and the recipient) of donation. A desire to act in accordance with social or religious precepts, expected positive feelings about donating, empathy for the recipient, and the simple desire to help another person were also commonly cited reasons for donating. Among a series of donor background characteristics, donors' gender was the variable most strongly associated with motive type; women were most likely to cite expected positive feelings, empathy, and the desire to help someone. Central study findings indicated that donor motives predicted donors reactions to donation even after the effects of donor background characteristics (including gender) were controlled. Donors who reported exchange motives (weighing costs and benefits) and donors who reported simple (or idealized) helping motives experienced the donation as less positive in terms of higher predonation ambivalence and negative postdonation psychological reactions than did remaining donors. Donors who reported positive feeling and empathy motives had the most positive donation reactions in terms of lower ambivalence, and feeling like better persons postdonation. These finding add substantially to the body of work concerning medical volunteerism generally, and also have important practical implications for the recruitment and education of potential bone marrow donors.

Assessment and follow-up of alcohol-dependent liver transplantation patients. A clinical cohort.

We describe pretransplantation characteristics of 103 consecutive alcoholic cirrhotics who underwent orthotopic liver transplantation over a 28-month period, and follow-up characteristics for 58 of 82 survivors. We examined whether certain pretransplantation psychiatric and demographic variables predicted posttransplantation outcomes. Patients who were sober < or = 6 months and those who died after transplantation had longer transplant hospital stays, suggesting that physiological compromise may predict posttransplant course. Using survival analyses because of variable follow-up intervals, only age over 50 years and index hospital stays greater than 1 month showed statistical trends toward predicting shorter posttransplant survival duration. Neither pretransplant sobriety, gender, nor duration of pretransplant heavy drinking predicted posttransplant survival duration. No variable, including preoperative sobriety < or = 6 months or attendance at alcohol rehabilitation peritransplant, predicted relapse except for female gender and pretransplant unemployment, in which cases the relapse rate was doubled. Our relapse rate of 21% is comparable to recidivism rates reported from other centers and for the general alcoholic population. These findings, several of which are contrary to general beliefs, continue to challenge our presumed predictive variables in selecting the best candidates for liver transplantation.

Psychological distress among caregivers to heart transplant recipients.

To test the hypothesis that family caregivers to heart transplant recipients may experience higher than average levels of distress during the period post-transplant and explore the correlates of distress, 83 caregivers were interviewed 3 times during the first year post-transplant and evaluated on predisposing and psychosocial characteristics. Mean distress was significantly elevated above community norms at initial assessment but subsided as the year progressed. Multiple regression analyses showed that: (a) employment status and caregivers' physical health were strong predictors of post-transplant distress while psychiatric history was not; (b) the burden of caregiving was associated with increased distress early post-transplant but not in later months; and (c) intrapersonal and social support resources early post-transplant were associated with distress both short-term and long-term. Interventions targeted at these environmental and personal factors may be important for minimizing negative effects of the transplant experience on family caregivers.

Psychosocial predictors of vulnerability to distress in the year following heart transplantation.

This study examines psychological symptomatology in a cohort of 72 heart transplant recipients followed longitudinally during their first year post-transplant. In keeping with research on other domains of life stressors and illnesses, a central study goal was to identify pre-transplant and perioperative psychosocial factors associated with increased vulnerability to, and maintenance of, elevated psychological distress levels post-transplant. Average anxiety and depression levels, but not anger-hostility symptoms, were substantially elevated in the early post-transplant period, relative to normative data. Average symptom levels improved significantly over time, although one-third of the sample continued to have high distress levels at all follow-up assessments. Recipients with any of seven psychosocial characteristics at initial interview were particularly susceptible to continued high average distress levels over time: a personal history of psychiatric disorder prior to transplant; younger age; lower social support from their primary family caregiver; exposure to recent major life events involving loss; poor self-esteem; a poor sense of mastery; and use of avoidance coping strategies to manage health problems. Recipients without such factors showed improvement in average distress levels across the assessment period. These effects were stronger for anxiety than depressive symptoms, with the exception of a sizeable relationship between loss events and subsequent depression. The findings suggest that clinical interventions designed to minimize prolonged emotional distress post-transplant need to be closely tailored to heart recipients' initial psychosocial assets and liabilities.

Chronic mechanical circulatory support: rehabilitation, low morbidity, and superior survival.

Because of donor scarcity, 12 (39%) of a series of 31 Novacor left ventricular assist system recipients required mechanical circulatory support for an average of 125 days before transplantation (range, 61 to 303 days). Ten received a heart transplant and all survived to discharge. Two died of infection before transplantation after 93 and 303 days of support. Significant reductions were noted from preimplantation values of right and left cardiac filling pressures. Right ventricular ejection fraction and cardiac index increased. The 4-month actuarial freedom from infection during support was 75%. Three patients benefited from chronic outpatient housing for 5, 18, and 131 days, respectively, with improvements in quality of life measures. Ten chronically supported patients participated in an intensive rehabilitative exercise program resulting in an improvement of New York Heart Association class from IV to I in 9 patients. Mean oxygen consumption, which was 10 mL.kg-1.min-1 30 days after implantation (mean exercise time, 10 minutes) had risen to 15 mL.kg-1.min-1 before transplantation (mean exercise time, 16 minutes). This series suggests that long-term circulatory support is compatible with low morbidity, significant physical and hemodynamic rehabilitation, and an outpatient setting.

Mental health effects of job loss in women.

This paper reviews literature on the mental health effects of involuntary job loss among women. In addition, a prospective study of the effects of job loss on psychological distress in a cohort of blue-collar women is described. A total of 141 women, of whom 73 were laid off during the 12-month study period, were examined. The occurrence and duration of lay-off was significantly associated with increased depressive symptoms, but not anxiety-related symptoms, even after effects of pre-lay-off psychological symptoms, social supports and occupational stress were considered. There was no evidence that these effects of lay-off were moderated by other characteristics measured prior to lay-off. Among women who were laid off, those who reported poor levels of support from their husband or partner in the immediate aftermath of lay-off and those experiencing more financial difficulties during the lay-off had higher depression levels at follow-up. The nature of the lay-off as a chronic psychosocial stressor is discussed.

The advantage of multiple measures of quality of life.

The concept of "quality of life" is rich and multi-faceted. In the present paper, we argue that the very richness of the concept requires that we (a) evaluate multiple dimensions of quality of life in our studies and (b) include multi-item assessments of each dimension selected for study. Conceptual and psychometric advantages which accrue by using multiple measures are delineated. We discuss the way in which the use of multiple measures affects the selection of instruments, the source of information, and the mode of data collection. In addition, the application of multi-item assessments to the construction of health status indices is considered along with their use in health policy and cost-benefit analyses.