Concerns of ABO incompatible and crossmatch-positive potential donors and recipients about participating in kidney exchanges.

Kidney paired exchanges (KPEs) have increased, yet are still underutilized. This study aimed to develop tools for assessing KPE concerns, identify predictors of KPE concerns, and describe common KPE concerns among potential living donors (LDs) and intended recipients. Incompatible former potential LDs (n = 135) and intended recipients (n = 83) retrospectively completed questionnaires to assess KPE concerns. Healthcare system distrust also was assessed. A minority (n = 48 or 36.5% of potential LDs; n = 25 or 30.1% of intended recipients) had pursued KPE participation. Of those who pursued KPE participation, 11 (22.9%) and 6 (24.0%) completed KPE donation or transplantation, respectively. The questionnaires for potential LDs and recipients showed good internal consistency and preliminary convergent validity. LDs and patients less willing to pursue KPE reported more KPE concerns. Common KPE concerns for both potential LDs and recipients were related to perceived Distrust/Inequity and Inconvenience/Cost. Multivariate predictors of more KPE concerns were as follows: male gender (t = 4.5, p < 0.001) and more healthcare system distrust (t = 2.5, p = 0.01) for potential LDs; black race (t = 2.1, p = 0.04) and more healthcare system distrust (t = 2.3, p = 0.03) for intended recipients. These findings underscore the importance of addressing concerns potential LDs and patients have about KPE if the true potential of KPE is to be realized.

Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience.

This article describes the development and implementation of an initiative at one transplant center to annually assess psychosocial outcomes of living kidney donors. The current analysis focuses on a cohort of adults (n = 208) who donated a kidney at BIDMC between September 2005 and August 2012, in which two post-donation annual assessments could be examined. One and two year post-donation surveys were returned by 59 % (n = 123) and 47 % (n = 98) of LKDs, respectively. Those who did not complete any survey were more likely to be younger (p = 0.001), minority race/ethnicity (p < 0.001), and uninsured at the time of donation (p = 0.01) compared to those who returned at least one of the two annual surveys. The majority of donors reported no adverse physical or psychosocial consequences of donation, high satisfaction with the donation experience, and no donation decision regret. However, a sizable minority of donors felt more pain intensity than expected and recovery time was much slower than expected, and experienced a clinically significant decline in vitality. We describe how these outcomes are used to inform clinical practice at our transplant center as well as highlight challenges in donor surveillance over time.

Development and validation of a questionnaire to assess fear of kidney failure following living donation.

Living kidney donors (LKDs) may feel more anxious about kidney failure now that they have only one kidney and the security of a second kidney is gone. The aim of this cross-sectional study was to develop and empirically validate a self-report scale for assessing fear of kidney failure in former LKDs. Participants were 364 former LKDs within the past 10 years at five US transplant centers and 219 healthy nondonor controls recruited through Mechanical Turk who completed several questionnaires. Analyses revealed a unidimensional factor structure, excellent internal consistency (α = 0.88), and good convergent validity for the Fear of Kidney Failure questionnaire. Only 13% of former donors reported moderate to high fear of kidney failure. Nonwhite race (OR = 2.9, P = 0.01), genetic relationship with the recipient (OR = 2.46, P = 0.04), and low satisfaction with the donation experience (OR = 0.49, P = 0.002) were significant predictors of higher fear of kidney failure. We conclude that while mild anxiety about kidney failure is common, high anxiety about future renal failure among former LKDs is uncommon. The Fear of Kidney Failure questionnaire is reliable, valid, and easy to use in the clinical setting.

Predictors of posttraumatic growth in women with breast cancer.

OBJECTIVE: Posttraumatic growth (PTG) is defined as 'positive psychological change experienced as a result of a struggle with highly challenging life circumstances'. The current study examined change in PTG over 2 years following breast cancer diagnosis and variables associated with PTG over time. METHODS: Women recently diagnosed with breast cancer completed surveys within 8 months of diagnosis and 6, 12, and 18 months later. Linear mixed effects models were used to assess the longitudinal effects of demographic, medical, and psychosocial variables on PTG as measured by the Posttraumatic Growth Inventory (PTGI). RESULTS: A total of 653 women were accrued (mean age = 54.9, SD = 12.6). Total PTGI score increased over time mostly within the first few months following diagnosis. In the longitudinal model, greater PTGI scores were associated with education level, longer time since diagnosis, greater baseline level of illness intrusiveness, and increases in social support, spirituality, use of active-adaptive coping strategies, and mental health. Findings for the PTGI domains were similar to those for the total score except for the Spiritual Change domain. CONCLUSION: PTG develops relatively soon after a breast cancer diagnosis and is associated with baseline illness intrusiveness and increases in social support, spirituality, use of active-adaptive coping strategies, and mental health.

A longitudinal investigation of posttraumatic growth in adult patients undergoing treatment for acute leukemia.

An acute leukemia diagnosis can be an extremely stressful experience for most patients. Posttraumatic growth (PTG) is positive psychological change experienced following a struggle with highly challenging life circumstances. The current study is the first longitudinal investigation of predictors of PTG and distress in adult acute leukemia patients undergoing induction chemotherapy. Findings suggest that these patients report PTG, and levels of PTG appear to increase over the weeks following leukemia diagnosis and induction chemotherapy. Variables associated with higher total PTG scores over time included greater number of days from baseline, younger age, and greater challenge to core beliefs. Variables associated with higher distress included greater number of days from baseline, greater perceived cancer threat, higher symptom severity, and lower spiritual well-being. Results underscore the critical role that examination of one's core beliefs may play in the development of PTG over time.

A group intervention to promote healthy self-concepts and guide recovery in first episode schizophrenia: A pilot study.

The stress associated with managing a first episode of schizophrenia and the secondary psychological sequelae may predispose young people to the phenomenon of illness engulfment, whereby personal identity is lost and replaced with a sense of self defined entirely by the illness. The overall objective of this pilot project was to provide an initial evaluation of the impact of a novel group intervention targeting improvement of self-concept (engulfment) and overall quality of life for young adults recovering from a first episode of schizophrenia. Fifty-two young adults diagnosed with a DSM-IV schizophrenia spectrum disorder were sequentially assigned to either a 12-week group intervention that provided members with opportunities to attain healthy self-concepts or a control group that received high quality treatment as usual. The two groups were compared on pretreatment, post-treatment, and 3-month post-treatment measures of engulfment, quality of life, and psychiatric symptoms. Allowing for dropouts, 26 subjects remained in the treatment group and 14 subjects in the control group after the 3-month follow-up. Participants in the treatment group demonstrated significant improvement in engulfment, quality of life (intrapsychic subscale) and symptoms, while the comparison group did not change. These preliminary results provide support for the benefits of a group intervention designed to enhance self-concept and to minimize the engulfing effects of illness.

"The Keepers of Stories": Personal Growth and Wisdom Among Oncology Nurses.

This study examined whether oncology nurses experience personal growth and wisdom as a result of caring for patients. Using a grounded theory approach, 30 nurses were interviewed regarding their experiences caring for cancer patients. Every nurse in this sample cited at least one example of growth and wisdom. Subthemes of personal growth were largely consistent with the documented domains of posttraumatic growth and included appreciation of life, new perspective on life, relating to others, spiritual/religious growth, and personal strength. Subthemes of wisdom were more varied, reflecting the diversity of this construct in the context of nursing. Benevolence arose as a unifying theme between personal growth and wisdom, with subthemes centering on altruistic attitudes and behavior toward patients and the greater community. Findings suggest that nurses develop personal growth, wisdom, and benevolence as a result of the emotional connections formed with patients and the subsequent struggle to cope with their loss. This process accords well with findings in other populations experiencing trauma and adversity directly.

Qualitative research.

A well thought out and conducted qualitative study provides a rich source of knowledge that can be used to provide new information about a phenomenon, promote insight and awareness of human experience and support the development of formal frameworks and tools (Kearney, 2001). At the most basic level, qualitative findings can encourage insight and empathy by raising nurses' awareness of "what it feels like to be in a given situation" (Kearney, 2001, p. 150). The study by Nagle (1998), for instance, draws nurses' attention to the disembodiment patients feel as they undergo hemodialysis and their struggle to develop a meaningful relationship with the technology they encounter on a daily basis. More formally, qualitative findings can also serve as the basis for assessment tools that allow nurses to compare the status of their patients with knowledge of a particular experience or illness trajectory (Kearney, 2001). For example, the grounded theory developed by Gregory et al. (1998) has served as the foundation for a quantitative measure of patients' perceptions of hemodialysis (Way, O'Brien, Gregory, Barrett, & Parfrey, 1999). This overview was intended to provide a general introduction to the main qualitative methods used in nursing research, and to briefly highlight some differences between qualitative and quantitative research. We hope that this review stimulates interest in qualitative approaches for nephrology nursing research.

Using latent growth curve modeling to examine changes in mental health outcomes for children enrolled in a system of care.

MeckCARES, a system of care (SOC) in Mecklenburg County, North Carolina, is designed to serve youth with severe emotional disturbances and their families. This study employed latent growth curve (LGC) modeling to examine (a) the degree to which youth improved on indicators of adjustment over the course of the first year of enrollment in MeckCARES, and (b) the services or demographic variables associated with individual differences in the rate of change over time. Participant caregivers (N = 121) reported on 3 major indicators of youth adjustment at baseline, 6-month follow-up, and 12-month follow-up. Primary analyses indicated that there was a modest yet significant improvement in all 3 outcome measures over the first year of enrollment in MeckCARES. Additional analyses revealed that caregiver reports of receiving case management at any point in the first year were associated with improvement in behavioral and emotional strengths as well as a reduction in psychological and behavioral symptoms. No significant differences in rate of change were observed based on caregiver-reported receipt of individual or family therapy nor any demographic variables. These findings suggest that MeckCARES may be particularly effective when youth are receiving case management services. Additional implications for practice are discussed.

Educational outcomes in a system of care for children with emotional disturbance.

In North Carolina, only 69% of high school students graduate in 4 years; however, recent data suggest that only 42% of students with mental and emotional disabilities graduate. MeckCARES, a system of care (SOC) in Mecklenburg County, North Carolina, is designed to serve youth with severe emotional disturbances and their families. The SOC philosophy is a prominent family-focused approach intended to provide comprehensive, coordinated networks of services, tailored to the needs of the child and family, while emphasizing the strengthening of natural community supports. In addition to other mental health objectives, a particular goal of MeckCARES is to address specific school-based needs of system-identified youth to improve educational outcomes and reduce the risk of dropping out. This study sought to assess empirically the impact that enrollment in MeckCARES has on graduation precursors; namely, grades, suspensions, and absences. This study found that, on average, enrollment in MeckCARES is not associated with positive changes in educational variables. Implications of these findings are discussed, as are future directions. For example, additional research is needed with more sensitive measurement and data collection procedures (i.e., access to graduation rates and Medicaid information) to adequately assess the impact of enrollment in MeckCARES on educational outcomes.

Exercise for older adult inpatients with acute myelogenous leukemia: A pilot study.

OBJECTIVES: Acute myelogenous leukemia (AML) largely affects older adults. Few interventions have sought to improve functional status and health-related quality of life (HRQL) during treatment. The objective of this study is to examine the feasibility of an exercise intervention among older adults with AML undergoing induction chemotherapy. MATERIALS AND METHODS: Pilot study of adults ≥50 years of age hospitalized for AML chemotherapy. The four week exercise intervention included stretching, walking, and strength exercises. Feasibility measures included recruitment, retention, number of exercise sessions completed, and barriers to participation. Physical function, HRQL, depression, and distress were assessed at baseline (week 1), upon completion of intervention (week 5), and during follow-up (weeks 9-13). Exploratory analyses used repeated measures ANCOVA to model changes over time. RESULTS: Among 55 eligible inpatients, 24 enrolled (43.6%). Mean age was 65.1 years (SD 7.8). 87.5% of participants completed baseline measures; 70.8% attended ≥1 exercise sessions, and 50.0% completed post-intervention assessment. Among baseline characteristics, only higher physical performance was associated with greater number of exercise sessions attended (p=0.001). Post intervention, HRQL and depressive symptoms improved (p <0.05). CONCLUSIONS: Recruitment to an exercise intervention was feasible. Exercise shows promise to maintain physical function and enhance HRQL. Strategies to enhance adherence to exercise are needed to maximize benefit.

Assessing posttraumatic cognitive processes: the Event Related Rumination Inventory.

Cognitive processes in the aftermath of experiencing a major life stressor play an important role in the impact of the event on the person. Intrusive thoughts about the event are likely to be associated with continued distress, while deliberate rumination, aimed at understanding and problem-solving, should be predictive of posttraumatic growth (PTG). The Event Related Rumination Inventory (ERRI), designed to measure these two styles of rumination, is described and validation information is provided. Using a college student sample screened for having experienced highly stressful life events, data were obtained (N=323) to conduct an exploratory factor analysis that supported the two factors of the ERRI. Separate confirmatory factor analyses (CFA) on two additional samples (Ns=186 and 400) supported a two-factor model. The two ERRI factors were validated by comparison with related variables and by assessing their contributions to predicting distress and PTG in two samples (Ns=198 and 202) that had been combined to conduct the second CFA. Data indicate the ERRI has solid psychometric properties, captures variance not measured by stable differences in cognitive styles, and the separate factors are related to posttraumatic distress and growth as predicted by existing models of PTG.

A short form of the Posttraumatic Growth Inventory.

A short form of the Posttraumatic Growth Inventory (PTGI-SF) is described. A sample of 1351 adults who had completed the Posttraumatic Growth Inventory (PTGI) in previous studies provided the basis for item selection. The resulting 10-item form includes two items from each of the five subscales of the original PTGI, selected on the basis of loadings on the original factors and breadth of item content. A separate sample of 186 completed the short form of the scale (PTGI-SF). Confirmatory factor analyses on both data sets demonstrated a five-factor structure for the PTGI-short form (PTGI-SF) equivalent to that of the PTGI. Three studies of homogenous clinical samples (bereaved parents, intimate partner violence victims, and acute leukemia patients) demonstrated that the PTGI-SF yields relationships with other variables of interest that are equivalent to those found using the original form of the PTGI. A final study demonstrated that administering the 10 short-form items in a random order, rather than in the fixed context of the original scale, did not impact the performance of the PTGI-SF. Overall, these results indicate that the PTGI-SF could be substituted for the PTGI with little loss of information.

The Core Beliefs Inventory: a brief measure of disruption in the assumptive world.

Stressful events that disrupt the assumptive world can force people to make cognitive changes to accommodate these highly stressful experiences. As fundamental assumptions are reestablished, many people report changes and experiences that reflect posttraumatic growth (PTG). The present research describes the development of the Core Beliefs Inventory (CBI), a brief measure of disruption of the assumptive world developed for use in applied research and clinical settings. Three studies, two using college samples (Study 1, n=181 and Study 2, n=297 time 1; 85 time 2) and the third using leukemia patients (Study 3, n=70 time 1; 43 time 2), assessed the utility of the CBI to predict PTG in both cross-sectional and longitudinal designs. Relationships between the CBI and measures of self-reported PTG and well-being indicate that the CBI has construct validity, acceptable test-retest reliability, and very good internal consistency. The CBI may be a useful tool in investigating predictions about the effects of stressful experiences on an individual's assumptive world, PTG, and successful adaptation.

Music for patients with hematological malignancies undergoing bone marrow biopsy: a randomized controlled study of anxiety, perceived pain, and patient satisfaction.

OBJECTIVE: To examine the impact of random assignment to music versus usual care on anxiety, perceived pain level and patient satisfaction in patients undergoing bone marrow biopsies. METHOD: Patients were randomized to music or usual care after completing a baseline questionnaire. All patients completed a post-procedure questionnaire. RESULTS: Study participants (N=59) had a mean age of 50.9 years (SD = 13.9; range 22-78). Post-procedure state anxiety (STAI) and pain rating (VAS) were not significantly different between groups (STAI p=0.766; VAS p=0.771). However, patient satisfaction with music was high; 66% of these patients said they very much preferred to listen to music at a future biopsy. CONCLUSIONS: While there were no significant group differences for the music intervention compared to standard of care for anxiety or perceived pain, additional feedback indicated that patients found the music intervention beneficial and requested use of music during future procedures.