Progress in Transplantation

No tools exist to measure patients' self-efficacy for and adherence to the complex home-care regimen after having a left ventricular device (LVAD) implanted.

To develop 2 new instruments, the LVAD Patient Self-Efficacy Scale (LPSES) and the LVAD Patient Home Management Adherence Scale (LPHMAS), and evaluate their psychometric properties.

This multistage instrumentation study recruited 102 patients (77.5% men and 22.5% women) aged 20 to 82 years, predominantly from the Midwest (34.3%) and the Northeast (26.5%) regions of the United States. Main indications for LVAD were bridge-to-transplant (69.6%) and destination therapy (21.6%), with mean implant duration of 19.9 (SD, 15.5) months. Study participants completed the following instruments: LPSES, LPHMAS, General Self-Efficacy Scale (GSES), Medical Outcomes Study General Adherence (MOSGA), and Self-Care Heart Failure Index (SCHFI) confidence and maintenance subscales. Item analyses, psychometric properties including factorial and convergent validities, and internal consistency reliability were tested.

Factor analyses showed that the variances for the 20-item LPSES and 9-item LPHMAS were 60.2% and 53.6%, respectively. Convergent validity of the newly developed instruments was supported by the following correlations: LPSES and GSES (r = 0.34); LPSES and SCHFI-confidence (r = 0.60); LPHMAS and MOSGA (r = 0.33); LPHMAS and SCHFI-maintenance (r = 0.40). Internal consistency reliability coefficients were 0.94 (LPSES) and 0.84 (LPHMAS). Based on these data, the LPSES and LPHMAS are valid and reliable measures of self-efficacy and adherence specific for LVAD patients. Confirmatory testing is needed to further support the validity of these instruments for use in research and clinical practice.

No published instrument has been designed to measure caregivers' self-efficacy for and adherence to the complex home-care regimen of patients with a left ventricular assist device (LVAD).

To evaluate the psychometric properties of 2 newly developed instruments: the LVAD Caregiver Self-Efficacy Scale (LCSS) and the LVAD Caregiver Home Management Adherence Scale (LCAS).

A multistage design was employed for this instrumentation study. Of the 125 LVAD caregivers recruited from online support groups, 98 (78.4%) provided complete data. Participants were predominantly female (80%), aged 18 to 79 years, from 4 regions of the United States. They completed the following instruments: LCSS, LCAS, General Self-Efficacy Scale (GSE), and the confidence and maintenance subscales of the Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI). Item analyses, factorial construct validity, convergent validity, and internal consistency reliability of the scales were evaluated.

The analysis of the LCSS (21 items) revealed a 2-factor solution, which consisted of a 17-item routine factor and a 4-item anticipatory factor. Convergent validity of the LCSS was supported by moderate correlations among LCSS, GSE, and CC-SCHFI-confidence. The analysis of LCAS (17 items) revealed a 1-factor solution. Its convergent validity was supported by moderate correlation between LCAS and CC-SCHFI-maintenance. Internal consistency reliability coefficients of the LCSS and LCAS were α = 0.93 and α = 0.96, respectively. These data suggest that the 2 instruments are adequately valid and reliable measures of self-efficacy and adherence in the context of LVAD patient care managed by home caregivers. Further research is needed to support the applicability of these instruments in other research and practice settings.

The effect of loss on those approached for organ and/or tissue donation, particularly in the years thereafter, has received little attention.

To assess whether adjustment of a parent to loss of a child is influenced by interactions with health care personnel.

A self-administered questionnaire was completed by the parents of 216 decedents. Interactions in the hospital were assessed by examining the experience in the hospital, physical separation from the child, and the relationship with health care professionals. Adjustment to loss was defined by 4 components: grief, personal growth after loss, meaning of life after loss, and the meaning of organ donation.

A positive experience in the hospital was significantly associated with the meaning of donation. Increased satisfaction with the separation process was associated with better adjustment on all components. Finally, a better relationship with health care professionals was associated with less grief and with greater personal growth. These results were characterized after adjustment for time since loss, which was from 6 months to 27 years.

Interactions in the hospital appear to influence adjustment to loss significantly. Appropriate interventions may aid parents in their adjustment to life.

Transition to adult-centered care is becoming an increasingly important area of practice in pediatric organ transplant. Standardized, best-practice guidelines are needed to assist transplant practitioners in providing optimal transitional care for this population of patients.

To describe the development and implementation of a practice guideline for the transitional care of pediatric transplant recipients.

A quality improvement project was undertaken in a pediatric multiorgan transplant program setting. Strategies employed included (1) creation of an interdisciplinary working group, (2) survey of transition-related practices and learning needs of transplant practitioners, (3) review of the literature and existing transition-related materials, and (4) creation of transition guidelines.

An interdisciplinary survey of transplant practitioners at our institution identified practice strengths related to transitional care and learning needs. Review of relevant literature and other materials revealed limited but emerging research related to the transition of pediatric transplant recipients from pediatric to adult care. Existing transition tools were examined and applicable items identified. A practice guideline for use with pediatric transplant recipients transitioning to adult care was developed. Strategies to educate staff about the guideline and promote ongoing guideline use were implemented.

Preparing pediatric transplant recipients and their families for transition to adult-centered care is an emerging challenge for transplant teams. These guidelines provide practitioners with a developmentally sensitive overview of important transition-related domains and strategies directed toward patients and their caregivers, who may experience the process of transition differently. Dissemination of the pediatric transplant transition guideline will make transition information more widely available to transplant practitioners.

Solid-organ transplant is the treatment of choice for end-stage organ failure and requires a transition from management of a life-threatening condition to a chronic illness. Despite research focusing on quality of life after transplant, there is a gap addressing the role of managing a chronic illness focusing on vulnerability and impact on family.

Identify patient and family patterns of adaptation among kidney and liver transplant recipients in regard to (1) vulnerability, (2) impact of illness on the family, (3) family functioning, and (4) quality of life (parent and child report).

Cross-sectional study enrolling children 5 to 18 years old and their parent at a single time point after kidney or liver transplant. Validated self-report tools were completed.

In all, 47 participants (24 kidney and 23 liver) were recruited. Mean age at transplant was 4.0 (kidney) and 2.1 (liver) years. Mean age at report was 12.1 (kidney) and 7.1 (liver) years. Child vulnerability correlated negatively with (1) family impact in the kidney (P < .05) and liver (P < .05) transplant groups, (2) PedsQL subscales including Parent Emotional (P < .05), Parent Social (P < .01), Parent Psychosocial (P < .01), Parent Physical (P < .05), Parent School (P < .05), and Child Social (P < .01) in the kidney transplant group, (3) PedsQL Parent Emotional subscale (P < .01) in the liver transplant group, and (4) Functional status (P < .01) in the liver transplant group.

Child vulnerability provides insight into quality of life and the impact of illness on the family and family functioning.

Living donor liver transplant is a viable option for eligible persons in need of a liver transplant, but little is known about the hospitalization experience of patients undergoing hepatectomy for transplant donation.

To explore the hospital experience of patients recovering from donor hepatectomy.

A qualitative interpretive descriptive design was used to understand the hospital experience of patients recovering from donor hepatectomy. Semistructured interviews, conducted before discharge, were audiotaped and transcribed verbatim. Coding was performed independently, then jointly by investigators to reach consensus on emerging themes.

Major university hospital in the Northeastern United States.

Adults (>18 years of age) whose primary language was English or Spanish and who could provide written informed consent.

The sample consisted of 15 participants who had a mean age of 34.6 years; half were women. Most were white and college educated. The relationship of the donors to recipients varied from immediate family to altruistic donors. “Getting used to being a patient” was the major theme that captured the patients' postoperative experience. Four subthemes explained the experience: regaining consciousness, all those tubes, expecting horrible pain, and feeling special and cared for. These were described in the context of an “amazing and impressive” transplant team.

As healthy donors are getting used to being patients, these results provide clinicians with a deeper understanding of the transplant experience from the donor's perspective so that care can be tailored to meet their unique needs.

The increasing shortage of deceased donor kidneys suitable for African Americans highlights the critical need to increase living donations among African Americans. Little research has addressed African American transplant recipients' perspectives on challenges and barriers related to the living donation process.

To understand the perspectives of African American recipients of deceased and living donor kidney transplants on challenges, barriers, and educational needs related to pursuing such transplants.

A mixed-method design involved 27 African American kidney recipients (13 male) in 4 focus groups (2 per recipient type: 16 African American deceased donor and 11 living donor recipients) and questionnaires. Focus group transcripts were evaluated with NVivo 10.0 (QSR, International) by using inductive and deductive qualitative methods along with crystallization to develop themes of underlying barriers to the living donor kidney transplant process and were compared with the questionnaires.

Four main themes were identified from groups: concerns, knowledge and learning, expectations of support, and communication. Many concerns for the donor were identified (eg, process too difficult, financial burden, effect on relationships). A general lack of knowledge about the donor process and lack of behavioral skills on how to approach others was noted. The latter was especially evident among deceased donor recipients. Findings from the questionnaires on myths and perceptions supported the lack of knowledge in a variety of domains, including donors' surgical outcomes risks, costs of surgery, and impact on future health. Participants thought that an educational program led by an African American recipient of a living donor kidney transplant, including practice in approaching others, would increase the likelihood of transplant-eligible patients pursuing living donor kidney transplant.

Four challenge campaigns in 2012 and 2013 were undertaken to promote organ donor registrations in New York State. Challenge campaigns relied on community advocates statewide to initiate month-long outreach efforts with top teams earning monetary rewards and public recognition.

To significantly increase the number and proportion of New York residents who have consented to donation through the electronic registry.

Four month-long campaigns undertaken in fall and spring of 2012 and 2013.

Statewide recruitment efforts organized by New York Alliance for Donation and the 4 organ procurement organizations in New York State.

Adult residents of New York State.

Project staff recruited team leaders across New York State and used online and offline resources to recruit teams, educate team leaders, and bolster outreach efforts.

Number of completed registration forms within month-long campaign periods. Also investigated were statistics on website use (eg, page views, new visitors) and interviews with team leaders regarding campaign activities after the campaign.

Across 4 campaigns, 107 teams were recruited and 2286 persons registered their consent to donate through the state system. Each team recruited a mean of 21 persons; 40% of teams registered 0 persons.