Impact of psychosocial factors on medication level variability index and outcomes in pediatric liver transplant recipients.

BACKGROUND: Caregivers play an important role in maintaining a functioning graft after pediatric liver transplantation. Therefore, the psychosocial factors of both patients and caregivers can have a critical impact on transplant outcomes. Appropriate assessment and recognition of these factors pre-transplantation may allow transplant teams to better define the needs of pediatric organ recipients and develop specific countermeasures, which may then contribute toward improving transplant outcomes. METHODS: We studied 136 pediatric LT recipients followed at Texas Children's Hospital. Licensed social workers conducted comprehensive pre-transplant assessments on each patient, consisting of 22 psychosocial variables that were thought to impact adherence, which were reviewed during our study period. Non-adherence was determined using the MLVI for up to 4 years after transplantation. Biopsy-confirmed rejection episodes were assessed in the first 3 years after liver transplantation. RESULTS: Factors significantly associated with non-adherence (defined as MLVI >2) included parental age and parental education level at assessment, type of insurance, and household income. The number of ACR episodes trended higher in patients with non-adherence, and these patients had a higher number of moderate to severe rejection episodes but this trend was not statistically significant. CONCLUSIONS: Psychosocial characteristics such as parental age, education level, insurance, and household income may contribute significantly to suboptimal adherence to medications after transplantation. Identification of these psychosocial factors and early intervention is essential to the success and equitable care of our pediatric LT recipients.

Medication adherence in pediatric renal transplant patients: The role of family functioning and parent health locus of control.

Children and adolescents with renal disease experience daily social, emotional, and medical challenges. Renal transplantation can help to improve quality of life but requires a lifelong regimen of immunosuppressant medication to maintain health. Adherence to a daily complex regimen can be difficult, particularly for adolescents who are beginning to develop autonomy from caregivers and are faced with a unique set of socio-emotional challenges. This study examines two factors that have shown to influence adherence in other pediatric populations, namely family functioning and parent health locus of control, from mothers' perspectives, in predicting medication non-adherence for adolescents (ages 12-19 years) 1 year post-transplant. Non-adherence was defined as the percentage of missed doses and late doses of the weekly immunosuppressant doses prescribed. Regression results demonstrated that mothers' perceptions of poorer overall family functioning predicted missed medication doses (ΔR2  = 0.383, F(7, 21) = 2.570, P = 0.044) with significant contributions in the domains of problem-solving (ß = -0.795, t(21) = -2.927, P = 0.008) and affective involvement (ß = 0.872, t(21) = 3.370, P = 0.003). Moreover, mothers who perceived that their adolescent had control over his/her health also predicted more missed medication doses (ΔR2  = 0.133, F(1, 27) = 5.155, P = 0.031). Important implications for these findings include implementation of family-based interventions that promote developmentally appropriate skills for adolescents and cultivate emotional involvement within the family.

Patients prioritize waitlist over posttransplant outcomes when evaluating kidney transplant centers.

Factors that patients value when choosing a transplant center have not been well studied. In order to guide the improvement of patient-facing materials, we conducted an anonymous electronic survey of patients that assessed the relative importance of patient experience, practical considerations, transplant center reputation, center experience, and waitlist when selecting a transplant center. A total of 409 respondents completed the survey, of whom 68% were kidney transplant recipients and 32% had chronic kidney disease or were on dialysis. Participants had mean age 56 ± 12 years and were predominantly female (61%), white (79%), and had an associate's degree or higher (68%). Participants most often prioritized waitlist when evaluating transplant centers (transplanted 26%, chronic kidney disease 40%), and waitlist was almost twice as likely as outcomes to be ranked most important (30% vs 17%). Education level and transplant status were significantly associated with factors used for center prioritization. Waitlisted respondents most commonly (48%) relied on physicians for information when selecting a center, while a minority cited transplant-specific organizations. In order to improve shared decision-making, materials outlining center-specific waitlist features should be prioritized. Novel patient-oriented metrics for measuring transplant center quality that align with patient priorities must be explored.

A Randomized Trial of a Multicomponent Intervention to Promote Medication Adherence: The Teen Adherence in Kidney Transplant Effectiveness of Intervention Trial (TAKE-IT).

BACKGROUND: Poor adherence to immunosuppressive medications is a major cause of premature graft loss among children and young adults. Multicomponent interventions have shown promise but have not been fully evaluated. STUDY DESIGN: Unblinded parallel-arm randomized trial to assess the efficacy of a clinic-based adherence-promoting intervention. SETTING & PARTICIPANTS: Prevalent kidney transplant recipients 11 to 24 years of age and 3 or more months posttransplantation at 8 kidney transplantation centers in Canada and the United States (February 2012 to May 2016) were included. INTERVENTION: Adherence was electronically monitored in all participants during a 3-month run-in, followed by a 12-month intervention. Participants assigned to the TAKE-IT intervention could choose to receive text message, e-mail, and/or visual cue dose reminders and met with a coach at 3-month intervals when adherence data from the prior 3 months were reviewed with the participant. "Action-Focused Problem Solving" was used to address adherence barriers selected as important by the participant. Participants assigned to the control group met with coaches at 3-month intervals but received no feedback about adherence data. OUTCOMES: The primary outcomes were electronically measured "taking" adherence (the proportion of prescribed doses of immunosuppressive medications taken) and "timing" adherence (the proportion of doses of immunosuppressive medications taken between 1 hour before and 2 hours after the prescribed time of administration) on each day of observation. Secondary outcomes included the standard deviation of tacrolimus trough concentrations, self-reported adherence, acute rejection, and graft failure. RESULTS: 81 patients were assigned to intervention (median age, 15.5 years; 57% male) and 88 to the control group (median age, 15.8 years; 61% male). Electronic adherence data were available for 64 intervention and 74 control participants. Participants in the intervention group had significantly greater odds of taking prescribed medications (OR, 1.66; 95% CI, 1.15-2.39) and taking medications at or near the prescribed time (OR, 1.74; 95% CI, 1.21-2.50) than controls. LIMITATIONS: Lack of electronic adherence data for some participants may have introduced bias. There was low statistical power for clinical outcomes. CONCLUSIONS: The multicomponent TAKE-IT intervention resulted in significantly better medication adherence than the control condition. Better medication adherence may result in improved graft outcomes, but this will need to be demonstrated in larger studies. TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT01356277.

Assessing barriers to adherence in routine clinical care for pediatric kidney transplant patients.

Patient-identified barriers to immunosuppressive medications are associated with poor adherence and negative clinical outcomes in transplant patients. Assessment of adherence barriers is not part of routine post-transplant care, and studies regarding implementing such a process in a reliable way are lacking. Using the Model for Improvement and PDSA cycles, we implemented a system to identify adherence barriers, including patient-centered design of a barriers assessment tool, identification of eligible patients, clear roles for clinic staff, and creating a culture of non-judgmental discussion around adherence. We performed time-series analysis of our process measure. Secondary analyses examined the endorsement and concordance of adherence barriers between patient-caregiver dyads. After three methods of testing, the most reliable delivery system was an EHR-integrated tablet that alerted staff of patient eligibility for assessment. Barriers were endorsed by 35% of caregivers (n=85) and 43% of patients (n=60). The most frequently patient-endorsed barriers were forgetting, poor taste, and side effects. Caregivers endorsed forgetting and side effects. Concordance between patient-caregiver dyads was fair (k=0.299). Standardized adherence barriers assessment is feasible in the clinical care of pediatric kidney transplant patients. Features necessary for success included automation, redundant systems with designated staff to identify and mitigate failures, aligned reporting structures, and reliable measurement approaches. Future studies will examine whether barriers predict clinical outcomes (eg, organ rejection, graft loss).

Women's Experiences With Flap Failure After Autologous Breast Reconstruction: A Qualitative Analysis.

Clinical experience suggests that flap failure after autologous breast reconstruction can be a devastating experience for women. Previous research has examined women's experiences with autologous breast reconstruction with and without complications, and patients' experiences with suboptimal outcomes from other medical procedures. The authors aimed to examine the psychosocial experience of flap failure from the patient's perspective. Seven women who had experienced unilateral flap failure after deep inferior epigastric perforator flap surgery in the past 12 years completed semistructured interviews about their breast cancer treatments, their experiences with flap failure, the impact of flap failure on their lives, and the coping strategies they used. Interpretive phenomenological analysis, a type of qualitative analysis that provides an in-depth account of participant's experiences and their meanings, was used to analyze the interview data. From these data, patient-derived recommendations were developed for surgeons caring for women who have experienced flap failure. Three main themes (6 subthemes) emerged: coming to terms with flap failure (coping with emotions, body dissatisfaction); making meaning of flap failure experience (questioning, relationship with surgeon); and care providers acknowledging the emotional experience of flap failure (experience of being treated "mechanically," suggestions for improvement). In conclusion, flap failure in breast reconstruction is an emotionally difficult experience for women. Although there are similarities to other populations of patients experiencing suboptimal outcomes from medical procedures, there are also unique aspects of the flap failure experience. A better understanding of women's experiences with flap failure will assist in providing more appropriate supports.

Motivations, Challenges, and Attitudes to Self-management in Kidney Transplant Recipients: A Systematic Review of Qualitative Studies.

BACKGROUND: Kidney transplantation offers better outcomes compared to dialysis, but requires patients to adhere to an ongoing and complex self-management regimen. Medication nonadherence remains a leading cause of transplant loss, and inadequate self-management undermines transplantation and other health outcomes. We aimed to describe kidney transplant recipients' motivations, challenges, and attitudes toward self-management. STUDY DESIGN: Systematic review and thematic synthesis of qualitative studies. SETTING & POPULATION: Kidney transplant recipients. SEARCH STRATEGY & SOURCES: MEDLINE, EMBASE, PsycINFO, and CINAHL were searched to October 2014. ANALYTICAL APPROACH: Thematic synthesis. RESULTS: 50 studies involving 1,238 recipients aged 18 to 82 years across 19 countries were included. We identified 5 themes: empowerment through autonomy (achieving mastery, tracking against tangible targets, developing bodily intuition, routinizing and problem solving, and adaptive coping), prevailing fear of consequences (inescapable rejection anxiety, aversion to dialysis, minimizing future morbidity, trivialization and denial, and defining acceptable risks), burdensome treatment and responsibilities (frustrating ambiguities, inadvertent forgetfulness, intrusive side effects, reversing ingrained behaviors, and financial hardship), overmedicalizing life (dominating focus, evading patienthood, and succumbing to burnout), and social accountability and motivation (demonstrating gratitude toward medical team, indebtedness to donor, and peer learning). LIMITATIONS: Non-English articles were excluded. CONCLUSIONS: Self-efficacy and social accountability are motivators for self-management, although adherence can be mentally and physically taxing. Multicomponent interventions incorporating personalized care planning, education, psychosocial support, decision aids, and self-monitoring tools may foster self-management capacity and improve transplantation outcomes.

Medication understanding, non-adherence, and clinical outcomes among adult kidney transplant recipients.

We sought to evaluate the prevalence of medication understanding and non-adherence of entire drug regimens among kidney transplantation (KT) recipients and to examine associations of these exposures with clinical outcomes. Structured, in-person interviews were conducted with 99 adult KT recipients between 2011 and 2012 at two transplant centers in Chicago, IL; and Atlanta, GA. Nearly, one-quarter (24%) of participants had limited literacy as measured by the Rapid Estimate of Adult Literacy in Medicine test; patients took a mean of 10 (SD=4) medications and 32% had a medication change within the last month. On average, patients knew what 91% of their medications were for (self-report) and demonstrated proper dosing (via observed demonstration) for 83% of medications. Overall, 35% were non-adherent based on either self-report or tacrolimus level. In multivariable analyses, fewer months since transplant and limited literacy were associated with non-adherence (all P<.05). Patients with minority race, a higher number of medications, and mild cognitive impairment had significantly lower treatment knowledge scores. Non-white race and lower income were associated with higher rates of hospitalization within a year following the interview. The identification of factors that predispose KT recipients to medication misunderstanding, non-adherence, and hospitalization could help target appropriate self-care interventions.

Health Literacy Status Affects Outcomes for Patients Referred for Transplant.

BACKGROUND: It is hypothesized that limited health literacy affects outcomes for patients referred for transplant; however, research has not examined this for all types of end-stage organ disease. OBJECTIVE: The purpose of this study was to determine whether health literacy and cognitive impairment were related to listing for transplant and posttransplant outcomes. METHODS: Chart reviews were conducted on 398 patients who completed a required psychiatric evaluation before transplant listing. Information gathered from these evaluations included reading ability, math ability, and cognitive functioning. Variables before transplant and 6 months after transplantation were also collected. RESULTS: Patients with limited reading ability were less likely to be listed for transplant (p = .018) and were more likely to be removed from listing (p = .042), to miss appointments prelisting (p = .021), and to experience graft failure (p = .015). Patients with limited math ability were less likely to be listed (p = .010) and receive a transplant (p = 0.031), and more likely to be readmitted posttransplant (p = .029). Patients with cognitive impairment were less likely to be listed (p = .043) and to receive a transplant (p = .010). CONCLUSIONS: To achieve superior transplant access and outcomes, transplant providers should regularly screen patients for limited health literacy and cognitive impairment. Future studies should evaluate whether interventions result in better outcomes for these patients.

[Management of older patients following solid organ transplantation]. / Management älterer Patienten nach Organtransplantation.

Due to a continuous expansion of transplantation registers, such as the old-for-old program in Europe, the number of older patients treated with transplantation is increasing. At the same time the perioperative survival rates show a clear increase even in this patient collective (older than 65 years); therefore, the probability that the care of older patients after organ transplantation will be undertaken in the routine practice increases. This article describes the medical characteristics of older patients following organ transplantation. Special emphasis is placed on the management of accompanying diseases as well as possible side effects and interactions of immunosuppressive therapy.

[Transplantation and retransplantation--impact on emotional state]. / Transplantacija i retransplantacija--utjecaj na emocionalno stanje.

In our clinical practice, we are often faced with emotional difficulties of transplanted patients. Most are due to anxiety, difficulty in integrating newly recruited organ as its own, feeling of guilt, and difficulties with personal experience of self. Despite common presence of emotional difficulties, many studies describe improvement in the quality of life of transplant patients. However, the quality of life is deteriorating again in case of transplant rejection. In such situations, restlessness develops along with losing control over their own lives, a sense of failure, hopelessness and lack of prosperity ideas. Complex emotional experiencing is very important in strengthening the patient's psychological health and personality, thus achieving better treatment compliance in general.

Patients' experiences in hospital following a liver transplantation.

Research is scarce regarding patients' experiences, feelings and thoughts the first 4 weeks after liver transplantation. Most research involving patients with a liver transplant are conducted several months, or even years, after the transplantation. The aim of this study is to present results from research interviews that took place post-transplant while patients still were in hospital. The design is explorative and hermeneutic. Fifteen patients were interviewed 3-5 weeks after transplantation. The results are presented in the following themes: (i) general contentment with the hospital stay, (ii) physical discomfort, (iii) dreams, nightmares and hallucinations, (iv) Comedowns experienced during rejection of the transplant and (v) Other psychological/mental reactions. A major result from our study is patients' own descriptions of comedowns experienced during rejection of the transplant, and the seemingly little consolation and support the patients received. Another major result is patients' own descriptions of dreams, nightmares and hallucinations, which are not fully described from the patients' own perspective while still in hospital.

Facial transplantation: avatars.

Avatar carries a pejorative connotation often related to an unfortunate hazard. In face transplants, incarnations were numerous. The analysis of their evolution through time and increasing sophistication of procedures turn out to be informative regarding the wide disrepairs in the craniofacial area. The authors report the principal constraints of face transplant and the evolution in minds to deal with it.

Hand transplantation.

The first successful hand transplant was performed in 1998, opening up a new possibility for patients who have suffered mutilating hand injuries. Since then, more than 60 such procedures have been performed throughout the world. This article describes the evolution of hand transplantation, outcomes of patients listed in the International Registry of Hand and Composite Tissue Transplantation, and ethical issues involved in hand transplantation. It also describes the hand transplantation program at Mayo Clinic, which was established in 2010.

Physical training effects in renal transplant recipients.

INTRODUCTION: Several studies demonstrated the benefits of rehabilitation in uraemic patients. This study evaluates physical and psychosocial effects of exercise on renal transplant recipients (RTRs). PATIENTS AND METHODS: Eight RTRs were evaluated before and after an exercise training consisting of thirty 40-minute sessions, three times a week, performed with the interval training technique. RESULTS: Hospital Anxiety and Depression Scale (HADS) significantly decreased (p<0.04 and <0.008, respectively). Quality of life mean scores (SF-36 test) significantly increased (p<0.000). No differences were recorded for muscle and fat mass, maximal explosive power of the lower limbs, alkaline and acid phosphatase, parathormone (PTH), myoglobin, lipoprotein-A, glomerular filtration rate (GFR), at rest heart rate, and cardiac troponin. IL-6 decreased from 2.8±0.6 to 1.7±0.5 pg/mL (p<0.01). Resting MAP fell from 112±4 to 99±3 mmHg (p<0.02). The metabolic threshold rose from 33±4 to 43±5% (p<0.033). The blood lactate level at peak exercise increased from 5.2±0.9 to 6.2±0.7 mmol/L (p<0.012). The maximum oxygen uptake increased from 1200±210 to 1359±202 mL/min (p<0.05), iso-load oxygen uptake decreased from 1110±190 to 1007±187 mL/min (p<0.034). The maximum working capacity increased from 90±14 to 115±15 watts (p<0.000). CONCLUSION: This study suggests that an appropriate dose of physical training is a useful, safe and non-pharmacologic contribution to RTR treatment.

The kidney transplant failure experience: a longitudinal case study.

PURPOSE: To explore participants' experiences of kidney transplant failure. BACKGROUND: Kidney transplants are effective and efficient but not without complications. About 7% to 12% of kidney transplants fail within a year, and rates of failure increase over time. Graft failure can have profound effects, often resulting in depression and, occasionally, suicidal feelings. Despite these issues, the personal dimensions of graft failure have been poorly researched. METHODS: One donor-recipient couple experienced irreversible graft rejection immediately after a kidney transplant. This article is a longitudinal case study of this family's experiences. Data were collected through 3 semistructured interviews, conducted before the transplant and at 3 and 10 months after the transplant. Interviews were recorded, transcribed verbatim, and data coded into categories arising from the participants' accounts. RESULTS: Transplantation represented a significant source of hope. Fear of transplant failure was a major concern, but was dealt with by using emotion-focused coping mechanisms. Graft rejection was devastating, causing feelings of grief, loss, suicide, and depression. Depression improved as physical health and a sense of personal control improved. The recipient felt inadequately prepared for graft failure and poorly supported by health professionals. CONCLUSION: The primary source of grief and depression appeared to be related to the recipient's "loss of imagined future" (ie, the life that she anticipated after transplant). Study findings have potential implications for the provision of care, information, and support for patients and their families before and after transplantation and for future related research.

The experience of kidney graft failure: patients' perspectives.

In this article we describe the phenomenon of kidney graft failure from the unique perspective of patients. Fifteen patients took part in semistructured interviews. We analyzed interviews using interpretative phenomenological analysis. The content analysis yielded five main emergent themes: life disruption, suffering, meaning making, resistance/acceptance, and social comparison. These results are discussed within the theoretical framework of psychosocial transition put forward by Parkes. A comprehensive description of the experience of kidney graft failure emerging from the patients' perspectives can provide a better understanding of the psychosocial aspects- not only the body aspects-of the phenomenon. It can help health care professionals better address patients' suffering, which is experienced by a person as a whole, and to offer support that promotes adaptation to kidney graft failure.