Progress in Transplantation

Ethnic/racial minority and nonminority families' perceived barriers to discussing preemptive living related kidney transplantation (LRKT) and their views on the potential value of health care professionals trained to address barriers are unknown.

To collect pilot data for evaluating perceived barriers to preemptive LRKT and to inform the development of a culturally sensitive intervention to improve families' consideration of LRKT. In 4 structured group interviews of African American and non—African American patients (2 groups) with progressing chronic kidney disease and their family members (2 groups), participants' perceived barriers to initiating LRKT discussions and their views regarding the value of social workers to support discussions were explored.

Patients' barriers included concerns about their (1) ability to initiate discussions, (2) discussions being misinterpreted as donation requests, (3) potential burdening of family members, (4) uncertainty about when to initiate discussions, and (5) inducing guilt or coercing family members. Family members' barriers included (1) feeling overwhelmed by patients' illness, (2) patients' denial about their illness, (3) caregiver stress, and (4) uncertainty about their own health or the health of other family members who might donate or need a kidney in the future. Participants reported that social workers could facilitate difficult or awkward discussions and help families understand the LRKT process, address financial concerns, and cope emotionally. Themes were similar between African Americans and non—African Americans.

Families identified several barriers to discussing preemptive LRKT that could be addressed by social workers. Further research must be done to determine whether social workers need to tailor interventions to address families' cultural differences.

Little is known about the role of patient's sex and emotional support in the prognosis of heart transplant candidates.

To examine patient's sex and emotional support as predictors of outcomes in the Waiting for a New Heart Study.

The Waiting for a New Heart Study is a prospective observational study of 318 patients (18% female) newly added to the waiting list for a heart transplant. Demographic, medical, psychosocial characteristics (including social support [ENRICHD Social Support Index; high vs low support]) were assessed at the time of wait-listing.

Time until death/delisting due to deteriorated health, considering competing outcomes (eg, transplantation) during the first 12 months after wait-listing were analyzed via cause-specific Cox proportional hazard models. Results—By 12 months, 32 men (12%) and 10 women (17%) had died/deteriorated. Medical risk was comparable across sexes. More men than women reported low emotional support (20.4% vs 8.6%) and being a past or current smoker (80.4% vs 56.9%). More women than men had low vocational level (93.1% vs 69.6%; all P values < .05). With medical risk and other confounding variables controlled for, female sex significantly increased risk of death/deterioration (hazard ratio, 2.30; 95% confidence interval, 1.04–5.12; P = .04); low emotional support further tended to increase the risk for this outcome (P = .07). As none of the 5 women with low emotional support had reached this end point, analyses were performed in the male sample and revealed that men with low emotional support were more than twice as likely to die/deteriorate than were men with high support (hazard ratio, 2.23; 95% confidence interval, 1.04–4.82; P = .04).

Women had worse survival while awaiting a heart transplant than men had, independent of confounding variables. Even though emotional support may be an important buffer for men, protective factors for women warrant further investigation with larger samples and/or longer follow-ups.

Heart transplantation is not curative and results in a high-morbidity chronic illness. Despite this, little research has focused on adolescents' quality of life after heart transplant. Such research is critically needed because of the complex developmental changes experienced by adolescents and the need for transition to self-management during this vulnerable period.

To examine adolescents' perceptions of their quality of life and factors affecting it.

Focused ethnography.

Fourteen adolescents (mean age, 17 years) who had received a heart transplant at least 6 months earlier were recruited from a large children's hospital. The ethnically diverse sample (7 black, 5 white, 1 Asian, and 1 Hispanic) included 8 females and 6 males.

The adolescents participated in audio-taped qualitative interviews, which were transcribed verbatim and entered into Ethnograph to assist with data management. Thematic analysis was used to identify recurrent themes.

Participants described life after transplant by saying, “It has its ups and downs.” Major themes included these: (1) I am normal and I am not normal, (2) I am grateful and I am resentful, and (3) I am managing and I am not managing. The themes reflect the dichotomous nature of the adolescents' experiences and provide insight into the complex needs of adolescents after heart transplant.

The basic assumption of the peer assist model is that nearly every transplant center is already doing something that other centers could adopt in order to streamline or enhance their own operations.

To describe how the Transplant Growth and Management Collaborative used the peer assist model with 2 large transplant centers in the United States and to identify best practices and outcomes.

The University of California, San Francisco, Medical Center.

Transplant health care providers (surgeons, nurse transplant coordinators) and administrative staff (program directors, financial advisers, quality representatives).

The peer assist model is a mechanism by which a transplant center receives feedback about a specific topic from another transplant center that encountered similar issues and developed effective action plans for overcoming barriers to success; it is a reciprocal model in which knowledge is shared.

The peer assist model benefited the preparation for accelerated growth in 2 of the largest transplant centers in the United States. The collaboration during peer assist visits is an opportune time for transplant centers to learn from one another.

No empirical longitudinal data on sleep and daytime sleepiness patterns in patients with an implantable left ventricular assist device (LVAD) exist.

(1) To describe the sleep patterns (sleep onset latency, sleep efficiency, sleep fragmentation index, total sleep time, and wake after sleep onset), sleep quality, and daytime sleepiness variables and (2) to determine the change in the pattern of these variables before and up to 6 months after LVAD implantation.

A longitudinal descriptive repeated-measures design was used. Patients wore wrist actigraphs (AW64 Actiwatch), which objectively measured sleep, for 3 consecutive days and nights before LVAD implant and at the first and second week and first, third, and sixth month after implantation. During these periods, patients also completed questionnaires on sleep quality and daytime sleepiness.

Twelve of 15 patients completed the 6-month data. Data were analyzed by using descriptive statistics and repeated-measures analysis of variance.

We found long sleep onset latencies and low sleep efficiency across time periods. High sleep fragmentation index was noted at baseline and 1 week after LVAD. Short total sleep times, long wake-after-sleep-onset durations, and poor sleep quality were evident at baseline and persisted up to 6 months after LVAD implantation. Low alertness level, a manifestation of sleepiness, was common during late morning to early evening hours. However, only sleep efficiency and wake after sleep onset showed significant changes in pattern (P < .05).

Sleep disturbance and daytime sleepiness may be prevalent before and up to 6 months after LVAD implantation, warranting further investigation.

Caregivers for patients with a long-term implantable left ventricular assist device have a very important role in helping patients maintain their health and well-being and attain an improved quality of life. Although the caregiving tasks, burdens, and challenges of family caregivers have been described in the literature, we know little about how caregivers adjust to or accommodate the new role in their lives.

To explore and describe the lifestyle adjustments of caregivers for adults living with a left ventricular assist device as a bridge to heart transplant or destination therapy.

A hermeneutic phenomenology was used as a guide for interviews and analysis of the data.

A purposive convenience sample of 5 women, aged 39 to 71 years, who had served as caregivers of a left ventricular assist device patient for at least 3 months.

Recruitment and data collection (interviews) were conducted in an outpatient clinic for the mechanical circulatory support program of a large academic medical center in the Midwest.

Three main themes (caregiving: a “24/7” responsibility, coping strategies, and satisfaction) and 13 subthemes emerged from the data.

Lifestyle adjustments with caregiving may become easier over time, and with effective use of coping strategies, caregivers accept their new caregiving role as part of life.

Globally, the demand for donated organs outstrips supply, meaning that there are both practical and theoretical reasons for examining factors that are predictive of individuals' willingness to donate their organs upon their death.

To determine whether individuals of different religious denominations living in Australia have different views on organ donation, whether donation attitudes differ significantly across ethnic groups, and whether factors identified in international research are predictors of willingness to donate and actual donor behavior in this population.

Data for this study were collected from students at an Australian university from a range of religious and ethnic backgrounds, and their friends and relatives (N = 509).

Participants were administered the Organ Donation Attitude Scale, as well as additional attitudes and knowledge measures.

Self-reported “willingness to donate” and “donor behavior.”

Our findings complemented those reported in comparable countries, with females, younger Australians, and those with high knowledge levels being more willing to donate than males, older persons, and those with low knowledge. Persons who described themselves as having stronger religious beliefs (particularly Buddhist and Islamic) held less favorable attitudes toward donation, had lower knowledge levels, and were more likely to oppose donation.

Although this study established that attitudes toward, knowledge about, and predictors of organ donation in Australia are similar to those reported elsewhere, donation rates remain low. Further in-depth research examining the impact of religion and culture on attitudes, beliefs, and behavior is essential when exploring strategies to improve organ donation rates in highly multicultural societies such as Australia.

The lack of uniformity in the reporting of direct and indirect costs by organ acquisition cost centers, diagnosis-related groups, and in physician reimbursement often results in Medicare overpayment and findings of unjustified charges in audits conducted by the Office of the Inspector General. Although it is true that organ transplantation costs vary widely, uniform cost-report accounting is needed.

Henry Ford Transplant Institute has developed systematic auditing protocols that result in acceptable compliance with Medicare. The differences between those protocols and the methods used elsewhere are illustrated by the results of a national survey of transplant centers.

The survey addresses 10 crucial questions, drawn from the cost-reporting model used at Henry Ford Transplant Institute.

Surveys were distributed via the United Network for Organ Sharing list-serv, with replies from 43 centers.

The participants were transplant administrators.

Several important practices that are audited by the Office of the Inspector General were not followed by a number of reporting institutions. About 30% did not account for pretransplant charges, 15% did not track pretransplant services, 40% do not use an external consultant, and the frequency of physician time studies varied. On the other hand, the vast majority of institutions perform frequent time studies and manually review pretransplant charges. These results suggest that most centers use accounting methods similar to those used at Henry Ford Transplant Institute, which will significantly improve recognition of pretransplantation costs.