bluuebunny/crossref_metadata_2025_split huggingface dataset:
Validation and Refinement of the Questionnaire for Lung Transplant Patients
Authors: Dabbs Annette De Vito , Kim Yookyung , Vensak Judith , Studer Sean , Iacono Aldo 
Published: July 2017

Context The Questionnaire for Lung Transplant Patients was designed to assess symptoms and activity tolerance in lung transplant recipients during their post-transplant evaluations. The initial psychometric evaluation determined that the questionnaire was clinically useful, reliable, and valid. Objective To report the results of further psychometric analyses in a new, expanded sample of lung transplant recipients and to demonstrate the iterative manner by which instruments are refined and tested. Methods Internal consistency, test-retest stability, convergent validity, factorial validity, and group differences attributable to age, gender, and transplant type were determined in a pooled sample of 177 lung transplant recipients. Sensitivity to change over time was measured in a subsample (n=51) who provided repeated measures data. Results The Questionnaire for Lung Transplant Patients and its subscales were internally consistent (Kuder Richardson reliability of 0.73–0.95). Test-retest stability was high (intraclass correlations >0.70). Symptoms showed a significant curvilinear pattern with a tendency to decrease over time before rising again at the 12-month measurement for the total questionnaire (F=6.8, P=.012) and 2 subscales—Respiratory (F=5.6, P=.022) and Activities of Daily Living (F=19.7, P<.001). Convergent construct validity correlations ranged from 0.29 to 0.53 and were consistent with theoretical expectations. Factorial analysis confirmed 3 domains that coincided with the Respiratory, General, and Activities of Daily Living subscales. Conclusions The Questionnaire for Lung Transplant Patients is a reliable and valid measure for assessing physical symptoms and activity intolerance after lung transplantation in individual recipients, recipients in aggregate, and comparison groups, on one occasion and serially over time. These results will guide future refinement and testing of the Questionnaire for Lung Transplant Patients.
The Influence of Psychosocial Evaluation on Candidacy for Liver Transplantation
Authors: Flamme Nancy E. , Terry Colin L. , Helft Paul R. 
Published: July 2017

Context Although medical factors clearly dominate the evaluation of appropriateness for liver transplant, psychosocial factors are an important dimension in the evaluation process. Objective To understand more about the weight assigned to psychosocial factors in the decision to list patients for liver transplant and about whether such differences create hidden inequities in the transplant allocation system. Design We conducted a mail survey of liver transplant surgeons and psychosocial evaluators at busy transplant centers assessing the importance these professionals assigned to psychosocial factors in evaluations for liver transplant candidacy. Participants Liver transplant surgeons and psychosocial evaluators from the highest volume liver transplant centers in the United States. Intervention Mail survey Results Psychosocial evaluators assigned greater importance to availability of transportation, adaptation to stress, and coping skills than did surgeons. Transplant psychosocial evaluators were less likely than transplant surgeons to recommend that a patient with a history of poor social support be listed for liver transplant. We found no correlation between relative weight assigned to psychosocial factors and median wait times at transplant centers. These differences suggest that the relationship between the factors identified by psychosocial evaluators as important and transplant outcomes should be studied. Overall, more research into the predictive and ethical aspects of psychosocial evaluation for liver transplant is needed.
Infection, Rejection, and Hospitalizations in Transplant Recipients Using Telehealth
Authors: Leimig Renata , Gower Gayle , Thompson Denise A. , Winsett Rebecca P. 
Published: July 2017

Context Telehealth technology serves individuals who live in geographical areas that prohibit easy access to specialized health care and can provide transplant recipients with access to transplant center personnel for adjunctive follow-up care. Objective To compare infection, rejection, and hospitalization events in subjects randomized to telehealth or to standard posttransplant care. Study Design, Study Participants, Setting and Research Procedure This longitudinal prospective study compared transplant outcomes (infections, rejections, and hospitalizations) of 106 subjects who were randomized to either the telehealth (n=53) or standard care (n=53) group and met the 6-month study end point. Sex, race, and transplant type were evenly distributed within the 2 groups. Subjects received primary follow-up care from nurse practitioners. The telehealth visits were conducted via live interactive sessions with digitized equipment used to perform physical examinations. Main Outcomes Infections, rejections, and hospitalizations were summarized for each of the groups. Subgroup analyses were performed by sex, transplant type, and time since transplant. Results No differences were found between the telehealth and standard care groups for infections, rejections, or hospitalizations at the 6-month data end point. Overall, females had twice as many infections as males ( P = .01). In this analysis, group assignment did not affect study outcomes. Conclusions The rates of infection, rejection, and hospitalization in a sample of primarily long-term transplant patients did not differ between patients who received telehealth follow-up and patients who received standard care, indicating that this delivery system can be used to provide follow-up care after transplant.
Health Literacy Skills of Kidney Transplant Recipients
Authors: Gordon Elisa J. , Wolf Michael S. 
Published: July 2017

Context Although low health literacy can affect patients' treatment decision making, comprehension of health information, and medication adherence, little is known about health literacy skills of kidney transplant recipients. Objective To examine the relationship among kidney transplant recipients' health literacy levels, transplant knowledge, and graft function. Design Cross-sectional study of 124 adult kidney transplant recipients. Main Outcome Measures Health literacy was assessed via the Short Test of Functional Health Literacy in Adults (S-TOFHLA) and the Rapid Estimate of Adult Literacy in Medicine-Transplantation (REALM-T). Data on recipients' transplant numeracy, knowledge needs, and demographics were collected via semistructured interviews. Multivariable linear regressions were used to assess the relationship between health literacy and graft function. Results Most kidney recipients (91%) had adequate health literacy (S-TOFHLA); however, 81% were unfamiliar with at least 1 kidney transplant–related term (REALM-T). The 5 least familiar terms were sensitization (50%), urethra (45%), trough level (41%), blood urea nitrogen (32%), and toxicity (31%). Numeracy levels varied: 21% knew the likelihood of 1-year graft survival; 29% knew that half of kidney recipients have problems with the transplant in the first 6 months; 68% were aware of the risk of death within the first year after transplantation; and 86% knew the normal range for creatinine in kidney recipients. Patients with lower health literacy (REALM-T) had higher creatinine levels. Conclusions Transplant providers should intervene with better patient education materials to improve patients' health literacy, which may improve patients' medication adherence or transplant outcomes.
How Do Communities Want Their Information? Designing Educational Outreach on Organ Donation for Asian Americans
Authors: Wong Kristine A. , Cárdenas Vicky , Shiu-Thornton Sharyne , Spigner Clarence , Allen Margaret D. 
Published: July 2017

Context Support of organ donation among Asian Americans has been limited, but lack of access to information and prevalence of misinformation are 2 barriers that might be counteracted by public education. Objective To solicit advice from 4 Asian American communities on the design of a culturally appropriate educational campaign on organ donation and transplantation. Design and Setting Cross-sectional, multilingual survey administered at community festivals and supermarkets. Participants 201 Asian American respondents. Main Outcome Measures The components of an effective public education outreach campaign on organ donation were defined for 4 Asian American communities. Results Media venues ranked highest for information dissemination on organ donation/transplantation were, in descending order, mainstream television, ethnic newspapers, mainstream newspapers, and ethnic television. Most respondents preferred a spokesperson of Asian American descent, but opinions differed by ethnicity as to whether an effective spokesperson needed to be of the same Asian ethnicity as the respondents. Respondents were further divided by ethnicity on their preference for a locally or nationally well-known spokesperson. The most compelling scenario to promote organ donation was an Asian American waiting for a transplant, followed by an organ donor family or individual, and, last, a transplant recipient. Different advertisements for organ donation appealed to different Asian ethnic groups. Conclusions Community-based research gives communities the opportunity to collaborate with health professionals in designing health education programs that target their own populations. Because key aspects influencing campaign efficacy can vary by ethnicity, these important differences need to be taken into account in outreach planning.
Correlates of Support for Living Donation among African American Adults
Authors: Robinson Dana H. Z. , Borba Christina P. C. , Thompson Nancy J. , Perryman Jennie P. , Arriola Kimberly R. Jacob 
Published: July 2017

Context Living donation is studied with much less intensity among African Americans than among the general population. Examination of barriers to living donation can lead to effective strategies to educate dialysis patients and their families about this alternative. Objective To explore the correlates of likelihood of becoming a living donor among community-recruited African American adults. Design/Participants Cross-sectional data were gathered via self-administered questionnaire from 425 African American adults, age 18 years and older, who were recruited from 9 churches in Atlanta. Main Outcome Measures Self-reported likelihood of becoming a living donor to a close family member, an extended family member or friend, or a stranger. Results More than three-quarters of participants were willing to act as living donors to a close family member or spouse and two-thirds to friends or extended family. For likelihood of donating to a friend or extended family member, only willingness to engage in deceased donation was significantly associated; to a stranger, both willingness to engage in deceased donation and attitudes toward donation were significantly associated. Knowledge of and personal experiences with donation and/or transplantation were not significantly associated with likelihood of any type of living donation. Conclusions Findings indicate widespread support for living donation to a close family member or spouse. These findings have important implications for dialysis patients who must decide whether to approach friends and/or family about the possibility of serving as a living donor and emphasize the need for interventions to help facilitate this process.
Development and Validation of a Tool for Assessing Understanding of Brain Death
Authors: Tawil Isaac , Marinaro Jonathan , Brown Lawrence H. 
Published: July 2017

Background Death by neurological criteria is often misunderstood by laypersons even though they make decisions about withdrawal of care and organ donation. No validated questionnaire for determining laypersons' understanding of brain death exists. Such a tool could be useful in clinical, educational, and research settings. Methods Brain death experts and a focus group of laypersons were used to develop a 5-item questionnaire with face validity. The questionnaire explores 3 concepts: apnea, irreversibility, and differentiation between cardiac death, brain death, and persistent vegetative state. The questionnaire was administered to separate groups of laypersons and experts and was readministered 7 to 10 days later. Test-retest reliability for individual items and overall score was measured by using Spearman rank correlation. Internal consistency of the questionnaire was measured by using Cronbach α. Utility of the questionnaire in discriminating between scores of laypersons and experts was evaluated by using a t test. Results Twelve laypersons and 13 experts participated. The test-retest correlation was significant for all questions (Spearman ρ range, 0.43–0.94) and raw score (Spearman ρ=0.91, P < .001). Internal consistency was fair (Cronbach α = 0.64). The questionnaire enabled discrimination of laypersons from experts, with mean (SD) raw scores of 3.0 (1.1) vs 4.8 (0.6), respectively ( t test, P < .001). Removal of 1 item improved internal consistency (Cronbach α =0.70), but with a corresponding decrease in discriminatory ability. Conclusions This simple 5-item questionnaire for evaluating understanding of brain death has test-retest reliability, internal consistency, and can be used to discriminate between persons who do and do not understand brain death.
Assessing Historical Compliance with Medical Recommendations among Transplant Candidates: Preliminary Findings
Authors: Madan Alok , White-Williams Connie , Borckardt Jeffery J. , Rayburn Barry K. , Bush Beverly A. , Thurstin A. Hal 
Published: July 2017

Context Noncompliance with medical recommendations by transplant candidates and recipients carries serious consequences for morbidity and mortality. Few patient-specific, objective measures for assessing historical compliance exist. Objective To address this gap, a psychometric and exploratory analysis of an interview-based, global measure of clinician-rated judgment of historical compliance was undertaken. Methods All findings are based on a retrospective chart review of the medical and psychosocial evaluations of 96 consecutive potential heart transplant candidates seen at a large Southeastern academic medical center. Results Preliminary results demonstrated adequate interrater reliability and discriminant validity for the measure. Additionally, results from hierarchical multivariable regression analysis revealed years of education to be positively associated with clinician-rated judgment of historical compliance. Conclusions This study provides preliminary psychometric support for the use of a measure of historical compliance among heart transplant candidates. Findings from this study also are consistent with the literature to date and may be reflective of a psychobiological process that mediates the relationship between socioeconomic status and health outcomes.
Gastrointestinal Symptoms in Kidney Transplant Recipients: What about Silent Sufferers?
Authors: van Dijk Marja , Niesing Jan , van der Heide Jaap J. Homan , de Maar Eltjo F. , Ploeg Rutger J. , van Son Willem J. , Seelen Marc A. J. 
Published: July 2017

Context Transplantation improves health-related quality of life in patients with end-stage renal disease. However, primarily because of adverse effects of medication, among other gastrointestinal symptoms, health-related quality of life is not completely restored to normal. Although many patients have various gastrointestinal symptoms only a small proportion may be reported spontaneously. Objective To evaluate the prevalence of gastrointestinal symptoms in kidney transplant recipients, also the difference between spontaneously reported symptoms and symptoms elicited by specific questioning was assessed. The burden of these symptoms in daily life also was analyzed. Design A single-center, sequential, mixed method study to assess the difference between spontaneous patient reports of gastrointestinal symptoms and active screening by a questionnaire in kidney transplant patients. Patients In February 2008, patients received a questionnaire on gastrointestinal symptoms; notes in medical records were consulted for patients scoring less than 100. In June 2008, those patients received a second, extended questionnaire aimed to assess the burden of gastrointestinal symptoms in daily life. Results Ninety-two of 513 patients eventually proved to have gastrointestinal symptoms. Completed questionnaires were compared with notes in the patients' files of the past year. A total of 51 of these 92 patients appeared to have not mentioned their gastrointestinal symptoms during the outpatient clinic visits. Of these 51 patients, 37 reported a significant impact of gastrointestinal symptoms on daily life. Conclusions The silent sufferer exists. Specific questioning helps to improve communication concerning bothersome gastrointestinal symptoms. To assess the burden of these symptoms, a validated questionnaire should be developed.
Organ Donation Procedures: An Epidemiological Study
Authors: Roza Bartira de Aguiar , Pestana José Osmar Medina , Barbosa Sayonara de Fatima Faria , Schirmer Janine 
Published: July 2017

Objective To evaluate the impact of organ and tissue donation processes on family members of deceased donors and the probability that they would be an organ or tissue donor in the future. Methods Cross-sectional survey of 69 families of deceased donors of the organ procurement organizations of the Federal University of São Paulo. Results Donors were predominantly men (57%vs 43%) with a median age of 35.9 years. The primary causes of death were classified as natural (65%), traumatic injury (33%), and other (1%). Of the family members surveyed, 40% had an elementary school education and 59% were unemployed. Family members expressed an understanding of the brain death diagnosis (67%). Among them, 74% had no doubt about brain death and had time to ask questions. The diagnosis was provided by the doctor responsible for the patient (89%). Family members also used funeral aid benefit (63%), perceived organ donation positively (97%), and indicated that they would donate again (79%). A significant relationship was found between families that took advantage of the funeral aid benefit and families that would donate again (79% vs 22%, P= .002). Conclusion The intent to donate organs for transplantation may be based more on moral and cultural factors that go beyond the family members' knowledge about the donation process per se.
Bridge to Decision: SWAT Team Approach Used by Mayo Clinic Arizona's Cardiac Transport Team
Authors: Staley Linda L. , Dobberpuhl Jeff , Pierce Christopher N. , Scott Robert L. , Jaroszewski Dawn E. , Arabia Francisco A. 
Published: July 2017

Objective Patients in acute cardiogenic shock are the most challenging patients to manage. Unless a mechanical circulatory assist device is placed, maintaining end-organ function can be difficult. Transporting cardiogenic shock patients to tertiary care centers for higher level care also is difficult. The Mayo Clinic Arizona uses a SWAT team approach to deploy a specialized medical or surgical multidisciplinary team to implant mechanical circulatory assist devices at referring hospitals and transport patients back to Mayo Clinic Arizona. Results The cardiac transport team at Mayo Clinic Arizona got 23 referrals from 15 local community hospitals from February 2006 to September 2009. The medical team deployed for transfers of 6 patients, 3 of whom survived to hospital discharge. The surgical transport team deployed for transfers of 17 patients (6 with left ventricular assist devices, 2 with right ventricular assist devices, 5 with biventricular assist devices, and 4 with extracorporeal membrane oxygenation), of whom 8 survived to hospital discharge. Ten of the 17 referrals (59%) required a surgeon to place a mechanical circulatory assist device at the referring hospital. Conclusion The SWAT team approach allows cardiogenic shock patients to be stabilized at the referring hospital by heart failure and cardiac surgical specialists. If necessary, a surgeon from Mayo Clinic Arizona places a mechanical circulatory assist device at the referring hospital to stabilize the patient. Doing so allows safe transport back to the tertiary care center for higher level care and possible transplant evaluation with placement of a long-term durable device.
Too Poor for Transplant: Finance and Insurance Issues in Transplant Ethics
Authors: Laurentine Kyle Alexander , Bramstedt Katrina A. 
Published: July 2017

Context Donor organs are a scarce gift. Additionally, transplantation is very expensive and the United States lacks universal health insurance for all citizens. These facts combine to make personal finance and insurance some of the criteria for wait listing at US transplant centers. Previous research has shown that the poor and the uninsured (as well as women and nonwhites) are less likely to receive a transplant. Living donor candidates are also limited by the US insurance system. Objective To determine the effect of finance and insurance variables on access to transplant and living donation. Design A qualitative descriptive study of ethics consultation data contained in a research registry approved by the institutional review board at California Pacific Medical Center. Setting and Participants This study analyzes research registry data from a large community hospital in Northern California that serves patients from California, Oregon, and Nevada. The registry data are derived from transplant ethics consultations occurring between January 1, 2007, and June 30, 2009. Main Outcome Measure This study explores the restriction of access to transplantation and of participation in living donation. Results More than a quarter of all transplant ethics consultation reports described the restriction of transplant-related treatment for reasons rooted in finance or insurance. Individuals on the recipient side and on the donor side were hindered with regard to access. Insurance status and personal ability to pay significantly affect access to transplantation in the United States, and this theme is a frequent feature of ethics consultations at California Pacific Medical Center.
Impact of a Chronic Kidney Disease Clinic on Preemptive Kidney Transplantation and Transplant Wait Times
Authors: Khosla Neenoo , Gordon Elisa , Nishi Laura , Ghossein Cybele 
Published: July 2017

Background Despite the known benefits of preemptive kidney transplantation, its rate of use remains low. Objective To determine whether focused, comprehensive education provided at a clinic for patients with chronic kidney disease would improve the rate of preemptive transplantation and transplant wait times. Methods A retrospective cohort study design was used. The rate of preemptive transplantation and transplant wait times were compared between patients with end-stage renal disease who had been followed in a chronic kidney disease clinic for more than 3 months and patients with end-stage kidney disease who had not been followed for chronic kidney disease care during the same period. Results More African Americans than others had initiated dialysis without having had previous care for chronic kidney disease. The rate of preemptive transplantation was 24% for patients followed in the clinic. For those patients without living donor options, mean transplant referral time was significantly different between patients followed at the clinic and patients who were not: 234 (SD, 392) days before dialysis was started versus 161 (SD, 525) days after dialysis was started ( P= .01). Conclusion A chronic kidney disease clinic can influence rates of preemptive kidney transplantation and transplantation referral times.