A scoping review of pediatric transplant education.

BACKGROUND: Education is crucial for pediatric patients and caregivers throughout the transplant continuum, yet data are lacking around which interventions are effective and in what circumstances. METHODS: We undertook a scoping review with the objectives of (a) describing the types, effects, and outcomes of patient-focused educational interventions before and after pediatric transplant and (b) understanding the educational experiences of patients and caregivers. Five scientific databases were explored for relevant literature using the JBI methodology. Educational interventions published in English, targeting pediatric solid organ transplant patients (0-25 years) and their caregivers were included. Relevant data from eligible articles (n = 27) were extracted and summarized. RESULTS: Eighteen articles describing 17 educational interventions were identified for objective A, and nine articles qualitatively assessing patient or parental learning needs were identified for objective B. Most interventions were directed toward teenage patients and their caregivers post kidney transplant, primarily focusing on medication self-management and adherence, or providing general information on transplant using multicomponent delivery formats. Most interventions achieved statistically significant improvements in knowledge (n = 8/9) and patients or caregivers expressed satisfaction with the intervention (n = 7/7) but health-related outcomes such as medication adherence (n = 2/6) or behavior change (n = 1/3) rarely achieved statistically significant results. In objective B, patients and caregivers described the transplant process as overwhelming, but indicated that social supports and education helped them cope. Participants consistently wanted more information than they received. CONCLUSION: Caregivers and pediatric patients value transplant education, but high-quality studies are limited. Since education is a fundamental part of the transplant process, future research in this area should be prioritized.

Education Before Kidney Transplantation.

CONTEXT: Poor knowledge about immunosuppressive (IS) medications remains a major problem for patients in the posttransplant setting. Therefore, more effective educational strategies in the pretransplant setting are being considered as a possible method to improve knowledge and readiness for the challenges of posttransplant care. However, the most effective/relevant content of a pretransplant educational program is yet to be determined. OBJECTIVE: To identify pretransplant education topics from the posttransplant patient perspective. DESIGN: A focus group meeting was conducted among 7 high-functioning, stable adult kidney transplant recipients recruited from the Saskatchewan Transplant Program. Demographic information including age, gender, occupation, background/ethnicity, and time since transplant were recorded. A moderator, assistant moderator, and research assistant facilitated the 90-minute focus group meeting using a predetermined semistructured interview guide. The session was audio recorded and transcribed verbatim. Nvivo software was used to code the data and identify emerging themes exploring views of participants relating to the educational information required for pretransplant patients. RESULTS: Patients were satisfied with the education they had received. Ideas were classified into the following major themes-patient satisfaction, transplant waitlist, surgery, medications, posttransplant complications, lifestyle and monitoring, knowledge acquisition, illusion of control, and life changes posttransplant. Knowledge gaps were identified in all areas of the transplantation process and were not exclusive to IS medications. CONCLUSION: Misconceptions regarding transplantation were identified by a group of high-functioning, stable adult recipients who were satisfied with their clinical care. Future educational strategies should aim to address the entire transplantation process and not be limited to medications.

The Health-Care Provider's Perspective of Education Before Kidney Transplantation.

CONTEXT: Adequate patient education is essential for preparing potential recipients for kidney transplantation. Health-care providers play a vital role in education and can identify gaps in patient understanding. OBJECTIVE: To identify deficits in patient knowledge from the perspective of a transplant multidisciplinary care team and determine whether their perceptions align with patients who have previously undergone a transplant. DESIGN: An open call was advertised for health-care providers to attend a focus group discussion regarding the educational needs of pretransplant patients in 1 Canadian center. A predetermined, semistructured set of questions was used to collect the views of transplant caregivers. A moderator, assistant moderator, and research assistant facilitated the discussion, which was transcribed verbatim. Paper surveys were distributed to collect opinions of those unable to attend or uncomfortable to voice their opinion in an open forum. Qualitative analysis software was used to identify any emergent themes. Results were compared to a previous study undertaken in transplant recipients. RESULTS: Despite pre- and posttransplant education, specific themes emerged including misconceptions about the assessment process and time on the wait list and the surgery, incongruency between patient expectations and outcome, and confusion regarding medications. Health-care provider perceptions were remarkably consistent with transplant recipients. CONCLUSION: Health-care providers identified gaps in patient understanding indicating that transplant candidates may not be internalizing what is taught. Innovative educational approaches may be needed to provide more successful patient education. Similarities between health-care provider and patient perceptions suggest that care providers are a valuable source of information.

Exploring the ability of ChatGPT to create quality patient education resources about kidney transplant.

BACKGROUND: Chat Generative Pre-trained Transformer (ChatGPT) is a language model that may have the potential to revolutionize health care. The study purpose was to test whether ChatGPT could be used to create educational brochures about kidney transplant tailored for three target audiences: caregivers, teens and children. METHODS: Using a list of 25 educational topics, standardized prompts were employed to ensure content consistency in ChatGPT generation. An expert panel assessed the accuracy of the content by rating agreement on a Likert scale (1 = <25 % agreement; and 5 = 100 % agreement). The understandability, actionability and readability of the brochures were assessed using the Patient Education Materials Assessment Tool for printable materials (PEMAT-P) and standard readability scales. A caregiver and patient reviewed and provided written feedback. RESULTS: We found mean understandability scores of 69 %, 66 %, and 73 % for caregiver, teen, and child brochures respectively, with 90.7 % of the ChatGPT generated brochures scoring 40 % on the actionability scale. Generated caregiver and teen materials achieved readability levels of grades 9-14, while child-specific brochures achieved readability levels of grades 6-11. Brochures were formatted appropriately but lacked depth. CONCLUSION: ChatGPT demonstrates potential for rapidly generating patient education materials; however, challenges remain in ensuring content specificity. We share the lessons learned to assist other healthcare providers with using this technology.

Video Education and Behavior Contract to Improve Outcomes After Renal Transplantation (VECTOR): A Randomized Controlled Trial.

Sub-optimal adherence to immunosuppressant medications reduces graft survival for kidney transplant recipients and adherence-enhancing interventions are resource and time intensive. We performed a multi-center randomized controlled trial to investigate the impact of an electronically delivered intervention on adherence. Of 203 adult kidney transplant recipients who received a de novo kidney transplant n = 173 agreed to participate (intent-to-treat population) and were randomized to the intervention (video education plus behavior contract n = 91) or the control (standard education, n = 82). No significant differences were found between the groups for medication adherence measured by the Basel Assessment of Adherence to Immunosuppressive Medications Scale, intrapatient variability in tacrolimus levels, time in therapeutic range for any immunosuppressant, knowledge, self-efficacy, QOL, or hospitalizations. Among a subgroup of 64 participants randomized to the intervention group who completed a post-intervention questionnaire, two-thirds (67%, n = 43) reported watching at least 80% of the videos and 58% (n = 37) completed the electronic goal setting exercise and adherence contract. An autonomous goal setting exercise and electronic behavioural contract added to standard of care did not improve any outcomes. Our findings reiterate that nonadherence in transplantation is a difficult multifactorial problem that simple solutions will not solve. Trial registration number NCT03540121.

Evidence of enhanced systemic inflammation in stable kidney transplant recipients with low Framingham risk scores.

BACKGROUND: While the Framingham risk score (FRS) predicts cardiovascular risk in the general population, it underestimates cardiovascular events in renal transplant recipients (RTR). Inflammation is common in RTR, and it is also a hallmark of vascular injury contributing to cardiovascular events. OBJECTIVE: To explore the relationship between inflammatory chemokines (CCL family) and FRS in a stable RTR. METHODS: The modified FRS (2009) was used to calculate the 10-yr probability of CVE in 150 RTR. A cross-sectional study measured plasma levels of 14 CCLs by Luminex technique in 53% (79/150) of the cohort and 28 controls. RESULTS: 43.3% of RTR was classified as low, 16% moderate, and 40.7% high FRS. FRS correlated with eGFR and all CCLs with R of <0.2(p = n.s). Compared with controls, CCL 1,4,8,15, and 27 were equally increased in both the high and low FRS groups (p < 0.04 and 0.03, respectively). The percentage of patients with low FRS and CCL 8,15, and 27 values above the 95% cutoff control levels was 46.1%, 76.9%, and 53.8%, respectively. CONCLUSIONS: Over one half of stable RTR, including those with low FRS, have increased inflammatory chemokine levels. Inflammation is not accounted for in the FRS, and this may explain the poor performance of FRS in transplant patients.

A Mixed Methods Assessment of Home-Based Video Pretransplant Lung Education.

Introduction: Patients awaiting lung transplantation must learn new information to successfully navigate the transplant process. A supplemental video series was piloted to patients at home during the Covid-19 pandemic to improve pre-transplant education. Methods: A mixed methods study was undertaken to assess patient experiences with this method of education, confirm the ideal timing of the education, and identify gaps that require further attention. Semi-structured interviews were conducted with 17 one-on-one or dyadic (patients and caregivers) who viewed the video series at home. A third-party researcher (not involved in creation of the educational materials) conducted the interviews by phone, which were audio recorded and then transcribed verbatim. NVivo 12 Pro for Windows software was used to code the data and identify emerging themes. Results: Participants indicated that home-based videos were applicable, and informative and helpful (4.7 on 5-point Likert scale) and appreciated the advice and experiences of real patients. They were satisfied with their transplant education (4.2/5). While there were few aspects that the participants disliked about the videos, the interviews elicited outstanding questions about the transplant process (eg, logistical aspects of travel) and transplant concerns (eg, medications, expenses, and precautions in daily life). Conclusion: Patients being assessed or listed for lung transplant valued the novel electronic video education, and we will implement the home-based process into standard of care after the patient's initial visit with the transplant respirologist. Pre-transplant education will be tailored to help address the outstanding gaps identified in this program evaluation.

Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study.

Background: A concerning number of kidneys (eg, expanded donor criteria, extended criteria, or marginal kidneys) are discarded yearly while patients experience significant morbidity and mortality on the transplant waitlist. Novel solutions are needed to solve the shortage of kidneys available for transplant. Patient perceptions regarding the use of these less than ideal kidneys remain unexplored. Objective: To explore the perspectives of patients who have previously received a less than ideal kidney in the past and patients awaiting transplant who could potentially benefit from one. Design: Qualitative description study. Setting: 2 provinces in Canada participated (Saskatchewan and Manitoba). Patients: Patients with end-stage kidney disease who were awaiting kidney transplant and were either (a) aged 65 years and older, or (b) 55 years and older with other medical conditions (eg, diabetes). Methods: Criterion sampling was used to identify participants. Semi-structured, one-on-one interviews were conducted virtually, which explored perceived quality of life, perceptions of less than ideal kidneys, risk tolerance for accepting one, and educational needs to make such a choice. The interviews were transcribed verbatim and thematic analysis was used to analyze the data. Results: 15 interviews were conducted with usable data (n = 10 pretransplant; n = 5 posttransplant). Participants were a mean of 65.5 ± 8.8 years old. Four interrelated themes became prominent including (1) patient awareness and understanding of their situation or context, (2) a desire for information, (3) a desire for freedom from dialysis, and (4) trust. Subthemes of transparency, clarity, standardization, and autonomy were deemed important for participant education. The majority of pretransplant participants (n = 8/10) indicated that between 3 and 5 years off of dialysis would make the risk of accepting a less than ideal kidney feel worthwhile. Limitation: The study setting was limited to 2 Canadian provinces, which limits the generalizability. Furthermore, the participants were homogenous in demographics such as ethnicity. Conclusion: These findings indicate that patients are comfortable to accept a less than ideal kidney for transplant in situations where their autonomy is respected, they are provided clear, standardized, and transparent information, and when they trust their physician. These results will be used to inform the development of a new national registry for expanding access to deceased-donor kidney transplant. Trial Registration: Not registered.

Contexte: De nombreux reins sont rejetés chaque année (donneurs à critères élargis, critères étendus ou reins marginaux), alors que les patients qui attendent une greffe présentent une morbidité importante et un taux de mortalité élevé. De nouvelles solutions sont nécessaires pour contrer la pénurie de reins disponibles pour une transplantation. Les perceptions des patients quant à l'utilization de ces reins moins idéaux restent inexplorées. Objectif: Explorer les perceptions des patients ayant reçu un rein moins idéal dans le passé et des patients en attente d'une greffe qui pourraient potentiellement bénéficier d'un tel don. Conception: Étude qualitative et descriptive. Cadre: Deux provinces canadiennes (Saskatchewan et Manitoba). Participants: Des patients atteints d'insuffisance rénale terminale en attente d'une transplantation (a) âgés de 65 ans et plus ou (b) âgés de 55 ans et plus et présentant d'autres problèmes de santé (ex. diabète). Méthodologie: L'échantillonnage avec critères a été utilisé pour identifier les participants. Des entretiens individuels semi-structurés menés virtuellement ont exploré la qualité de vie perçue, la perception quant aux reins moins idéaux, la tolérance à l'égard des risques inhérents à l'acceptation d'un tel rein, et les besoins d'information pour faire ce choix. Les entrevues ont été transcrites intégralement et l'analyze des données a été réalisée par analyze thématique. Résultats: Quinze entrevues avec données utilisables ont été menées (n = 10 avant la greffe; n = 5 après la greffe). Les participants avaient en moyenne 65.5 ± 8.8 ans. Quatre thèmes interreliés ont été dégagés : (1) la sensibilisation et la compréhension des patients quant à leur situation ou au contexte; (2) le besoin d'information; (3) le besoin d'un congé de dialyze; et (4) la confiance envers le médecin. La transparence, la clarté, la normalization et l'autonomie ont été jugées comme des sous-thèmes importants de l'éducation des participants. Pour la majorité des participants en attente d'une greffe (n = 8/10), l'idée d'un congé de 3 à 5 ans de dialyze rendrait acceptables les risques associés à l'acceptation d'un rein moins idéal. Limites: Étude tenue dans deux provinces canadiennes, ce qui limite la généralisabilité des résultats. Homogénéité des participants sur le plan démographique, notamment en ce qui concerne l'origine ethnique. Conclusion: Les résultats indiquent que les patients seraient à l'aise d'accepter un rein moins idéal pour une greffe, pourvu que leur autonomie soit respectée, qu'ils reçoivent des informations claires, standardisées et transparentes, et qu'ils aient confiance en leur médecin. Ces résultats serviront à éclairer l'élaboration d'un nouveau registre national afin d'élargir l'accès à la transplantation de rein provenant de donneurs décédés. Enregistrement de l'essai: Non enregistré.

A Randomized Controlled Trial of a Pretransplant Educational Intervention in Kidney Patients.

Poor patient knowledge about transplantation is a significant problem following kidney transplant. A video-based educational intervention was developed to supplement standard education provided by transplant teams. METHODS: A multicenter randomized controlled trial tested the intervention delivered to patients undergoing assessment or waitlisted for kidney transplant. Adult participants were randomized to the control (standard education) or the intervention group, consisting of electronic access to the videos (or digital video disks if no internet) plus standard education. Differences between groups in changes in transplant knowledge (measured by the Kidney Transplant Understanding Tool), education satisfaction, self-efficacy, and quality of life (secondary outcomes) were evaluated by a preintervention and postintervention survey. Video viewing habits were tracked and described for patients in the intervention group. RESULTS: One hundred sixty-two patients were enrolled, with 132 completing both questionnaires (n = 64 intervention and n = 68 control), with similar enrollment from 3 Canadian sites. Video viewing statistics in the complete cases indicated that 78% (50/64) watched the videos, with 70% (45/64) viewing them electronically, while 8% (5/64) received digital video disks and self-reported participation. Baseline knowledge scores in the intent-to-treat population were 55.4 ± 6.5 and 55.7 ± 7.1 in the intervention and control, respectively. The mean knowledge change in the intervention (2.1 ± 3.6) was significantly higher than in the control group (0.8 ± 3.4, P < 0.02). In the per-protocol analysis (patients with objective evidence of watching at least 80% of the videos), the knowledge improvements were 3.4 ± 3.8. Video group participants reported higher satisfaction with education (P < 0.02) and expressed positive comments in open-ended feedback. CONCLUSIONS: Electronic video education in the pretransplant setting improved knowledge and satisfaction.

The Saskatchewan Medication Assessment Program for Patients With Renal Failure: A Qualitative Study to Understand Health Care Provider Perspectives.

BACKGROUND: The Saskatchewan Medication Assessment Program (SMAP) compensates community pharmacists for medication reviews on eligible residents with the goal of optimizing patient care. Although medication reviews are meant to reduce risks associated with complex medication regimens, some patients may already be receiving specialized care from interdisciplinary health care teams from the renal programs in Saskatchewan. OBJECTIVE: A qualitative analysis was undertaken to examine the perceptions of health care providers about the SMAP process for patients receiving renal care in Saskatchewan. The goal was to explore potential benefits, facilitators, challenges, and/or barriers of the program in this population. DESIGN: Qualitative descriptive study. SETTING: The semi-structured interviews took place in the province of Saskatchewan. PARTICIPANTS: Community pharmacists, renal pharmacist, and nephrologists. METHODS: All nephrologists, renal pharmacists, and community pharmacies in Saskatoon and Regina were sent an invitation to participate in the study. Semi-structured interviews were completed with participants and were audio-recorded and transcribed verbatim. Coding was performed using NVIVO qualitative software, and meaning units and codes were consolidated into categories and subcategories using qualitative content analysis. RESULTS: A total of 9 community pharmacists, 10 renal pharmacists, and 8 nephrologists were interviewed. Community pharmacists had mixed levels of comfort providing SMAP assessments for renal patients, but expressed the desire to provide the best care possible and described patient benefits. Some categories (eg, barriers and improvements) and subcategories (eg, "collaboration/communication", "other challenges," and "suggestions for improvement") were consistent among all participant groups, while others (eg, "renal patients have complex care needs" and "duplication of service") were common among both renal pharmacists and nephrologists. The nephrologists had little knowledge of the program and of the role of the community pharmacist, indicating the need for improved education and communication. LIMITATIONS: The lack of renal patient perceptions on the SMAP process should be acknowledged and studied in future. A further limitation is the small sample size per subsample group. CONCLUSION: Despite some negative experiences, all of the participants believed the program can be beneficial. However, several recommendations were suggested to improve the SMAP process in renal patients and other complex patient populations.

CONTEXTE: Dans le but d'optimiser les soins aux patients, le Saskatchewan Medication Assessment Program (SMAP) rémunère les pharmaciens communautaires pour procéder à l'examen des médicaments prescrits aux résidents admissibles. Bien que ces examens visent à réduire les risques associés aux schémas posologiques complexes, certains patients reçoivent déjà des soins spécialisés par les équipes interdisciplinaires des programmes de santé rénale de la Saskatchewan. OBJECTIFS: Une analyse qualitative a été menée pour examiner la perception des fournisseurs de soins en regard du processus SMAP pour les patients recevant des soins de santé rénale en Saskatchewan. L'objectif était d'explorer les potentiels bienfaits, facilitateurs, défis et/ou obstacles du programme pour cette population. TYPE D'ÉTUDE: Étude qualitative et descriptive. CADRE: Entretiens semi-structurés s'étant tenus dans la province de la Saskatchewan. PARTICIPANTS: Des pharmaciens communautaires, des pharmaciens spécialisés en néphrologie et des néphrologues. MÉTHODOLOGIE: Tous les néphrologues, pharmaciens spécialisés en néphrologie et pharmaciens communautaires de Régina et de Saskatoon ont été invités à participer à l'étude. Des entretiens semi-structurés ont été menés auprès des participants. Les entretiens ont été enregistrés puis transcrits verbatim. Le logiciel d'analyse qualitative NVIVO a servi au codage; les unités et codes de signification ont été regroupés en catégories et sous-catégories à l'aide de l'analyse qualitative de contenu. RÉSULTATS: Neuf pharmaciens communautaires, dix pharmaciens spécialisés en néphrologie et huit néphrologues ont été interviewés. Les pharmaciens communautaires étaient plus ou moins confortables à l'idée de faire les évaluations du SMAP pour les patients atteints de néphropathies, mais ont exprimé le souhait d'en décrire les avantages aux patients et de fournir les meilleurs soins que possible. Certaines catégories (obstacles et améliorations) et sous-catégories (collaboration/communication, « autres défis ¼ et « suggestions d'améliorations ¼) étaient cohérentes entre les groupes, alors que d'autres (« les patients atteints de néphropathies ont des besoins complexes ¼ ou « dédoublement des services ¼) étaient fréquentes pour les néphrologues et les pharmaciens spécialisés en néphrologie. Les néphrologues en savaient très peu sur le programme et sur le rôle des pharmaciens communautaires, ce qui souligne la nécessité d'améliorer la sensibilisation et la communication. LIMITES: La perception des patients en regard du SMAP devrait être reconnue et étudiée dans de futurs essais. Aussi, le faible échantillon de chacun des sous-groupes de participants limite les résultats. CONCLUSION: Malgré quelques expériences négatives, tous les participants ont jugé que le programme peut être bénéfique. Plusieurs recommandations ont été avancées pour améliorer le processus du SMAP pour les patients atteints de néphropathies et pour d'autres populations de cas complexes. ENREGISTREMENT DE L'ESSAI: Sans objet.

A Qualitative Study to Explore the Needs of Lung Transplant Caregivers.

INTRODUCTION: Providing support throughout the lung transplant process is an intensive task, which requires a dedicated caregiver. The needs of caregivers who must relocate with their loved one receiving the transplant are currently unknown. The objective of this study is to explore experiences and perceptions of lung transplant caregivers identified from a satellite clinic to inform the development of educational resources. METHODS: A qualitative study with a phenomenology approach was undertaken with individuals who have taken on the role of a caregiver for lung transplant candidates or recipients and must travel to the specialized transplant center. Semistructured interviews were conducted with 12 caregivers. Interviews conducted by phone were audio-recorded and then transcribed verbatim. NVivo software was used to code the data and identify emerging themes. RESULTS: Ideas were classified into the following 4 themes: (1) the stress of being a caregiver, (2) caregivers undertake a variety of roles, (3) caregivers require support, and (4) satisfaction with health care providers. Even though the caregivers lived an average of 7.1 (standard deviation 2) hours from the surgical transplant center, all expressed satisfaction with the level of care that they received. Caregivers identified several stressors during the transplant process and described various strategies for coping. CONCLUSION: Caregivers shared their experiences on the transplant process. It was evident that being a caregiver was a stressful and supports were necessary for those undertaking this role. These insights will help inform the development of a new educational resource for patients and caregivers.

Randomised controlled trial of a video intervention and behaviour contract to improve medication adherence after renal transplantation: the VECTOR study protocol.

INTRODUCTION: Non-adherence after kidney transplantation contributes to increased rejections, hospitalisations and healthcare expenditures. Although effective adherence interventions are sorely needed, increasing education and support to transplant recipients demands greater use of care providers' time and resources in a healthcare system that is stretched. The objective of this clinical trial is to determine the effectiveness of an electronically delivered video series and adherence behaviour contract on improving medication adherence to immunosuppressant medications. METHODS AND ANALYSIS: A multicentre, parallel arm, randomised controlled trial will be conducted with four sites across North America (Saskatoon, Calgary, Halifax, Chicago). Adult patients will be randomised (1:1) to either the intervention (ie, home-based video education +behaviour contract plus usual care) or usual care alone. De novo transplant recipients will be enrolled prior to their hospital discharge and will be provided with electronic access to the video intervention (immediately) and adherence contract (1 month post-transplant). Follow-up electronic surveys will be provided at 3 and 12 months postenrolment. The primary outcome will be adherence at 12 months post-transplant, as measured by self-report Basel Assessment of Adherence to Immunosuppressive medications and immunosuppressant levels. Secondary outcomes include the difference in knowledge score between the intervention and control in groups (measured by the Kidney Transplant Understanding Tool); differences in self-efficacy (Generalised Self-efficacy Scale), Beliefs of Medicine Questionnaire (BMQ), quality of life (Short Form-12), patient satisfaction and cost utilisation. The study aims to recruit at least 200 participants across participating sites. ETHICS AND DISSEMINATION: Ethical approval was obtained from the University of Saskatchewan Behavioural Ethics Committee (Beh 18-63), and all patients provide informed consent prior to participating. This educational intervention aims to improve information retention and self-efficacy, leading to improved medication adherence after kidney transplantation, at low cost, with little impact to existing healthcare personnel. If proven beneficial, delivery can be easily implemented into standard of care. TRIAL REGISTRATION NUMBER: NCT03540121; Pre-results.

Development of a patient-centered video series to improve education before kidney transplantation.

BACKGROUND: Inadequate patient knowledge about transplantation can result in low patient satisfaction and contribute to poor clinical outcomes. The purpose of this patient-oriented research project was to develop an educational intervention for patients awaiting kidney transplantation. METHODS: An educational intervention was developed by patients and health care providers, experts in medication adherence, video education, motivational psychology, and cultural education. Project objectives were defined and content was guided by a series of studies conducted with stakeholders. A review process was undertaken with additional patients, external health care providers and ninth grade high school students and edits were applied accordingly. RESULTS: A set of six educational videos, ranging in length from 3 to 24 min, was created to describe the transplant process. The videos are patient friendly in design, and incorporate animations to explain complex information to accommodate low health literacy, and patient testimonials align the content with principles of adult learning theory. Feedback from external patient reviews [n = 8], external care providers [n = 13] and students [n = 26], indicate that the mini-series is informative and useful. CONCLUSION: Patient involvement significantly influenced the development of a video series about kidney transplantation. PRACTICE IMPLICATIONS: Patient engagement is integral for developing high quality and relevant educational interventions.

Development and Validation of the Kidney Transplant Understanding Tool (K-TUT).

BACKGROUND: Several educational interventions have been designed to improve patient knowledge before and after kidney transplantation. However, evaluation of such interventions has been difficult because validated instruments to measure knowledge-based outcomes in this population have not been developed. OBJECTIVE: To create a tool to measure patient knowledge of kidney transplantation and to evaluate its validity. METHODS: The Kidney Transplant Understanding Tool (K-TUT) was created using a stepwise iterative process. Experts in the field and transplant recipients were consulted to establish content validity. The K-TUT consists of 9 true/false and 13 multiple-choice questions, and scores are based on the number correct answers [YES/NO format] of 69 items. The questionnaire was piloted in a study that also measured health literacy (via the Short Test of Functional Health Literacy) in transplant candidates, whereas the main survey was mailed to transplant recipients. Test-retest was performed, and completed surveys were analyzed for internal consistency, construct validity, floor and ceiling effects, and reproducibility. RESULTS: Surveys were offered to 106 pretransplant patients and 235 in the posttransplant period, and response rates were 38.7% (41/106) and 63.4% (149/235), respectively. The mean corrected scores were 53.1 ± 8.5 (77%) and 56.2 ± 6.3 (81%), respectively. Test-retest was performed over 20% of both cohorts and percent agreement ranged between 70% and 100% in the pretransplant group and 66% and 100% in the posttransplant group. Cronbach α ranged from 0.794 to 0.875 in all cohorts indicating favorable internal consistency. Increased health literacy in the pretransplant group was significantly associated with increased knowledge (r = 0.52; P < 0.001), suggestive of construct validity, and the absence of floor and ceiling effects was positive. The majority of transplant recipients (98/148, 67%) believed the questionnaire adequately assessed transplant knowledge, about a quarter (36/148, 24.3%) were "unsure," and 85% (126/148) agreed that no questions should be removed. CONCLUSIONS: Although more study is warranted to further assess psychometric properties, the K-TUT appears to be a promising tool to measure transplant knowledge.

Prevalence of silent gastrointestinal complications in maintenance renal transplant population.

This study aims to determine the prevalence of silent GI complications within a stable renal transplant population and to investigate whether the conversion to enteric-coated myco-phenolate sodium (EC-MPS, Myfortic) would improve symptom scores. This was a single-center, open-label, non-randomized, prospective study. Patients without any history of GI com-plaints were evaluated by means of the gastrointestinal symptom rating scale (GSRS), with subse-quent switch to EC-MPS in a group of patients. Silent complications were defined as patients who voiced no GI complaints at clinic visits despite a score of > or = 2 on GSRS scale. A total of 236 stable patients participated in the trial. The prevalence of baseline scores > or = 2 was relatively high with abdominal pain 29.66%, reflux 37.28%, indigestion 50%, constipation 58.47% and diarrhea 33.4%. Of 236 patients, 80 were converted to EC-MPS. There was statistically significant improvement on all scales in the subgroup of patients with GSRS score > or = 2 (P < 0.05). In conclusion, the GSRS scale identified a high percentage of silent gastrointestinal complications in this renal transplant population. The converted patients with higher GSRS scores reported a sustained improvement.