Jasper Vanhoof

Development, preliminary usability and accuracy testing of the EBMT 'eGVHD App' to support GvHD assessment according to NIH criteria-a proof of concept.

The EBMT Complications and Quality of Life Working Party has developed a computer-based algorithm, the ‘eGVHD App’, using a user-centered design process. Accuracy was tested using a quasi-experimental crossover design with four expert-reviewed case vignettes in a convenience sample of 28 clinical professionals. Perceived usefulness was evaluated by the technology acceptance model (TAM) and User satisfaction by the Post-Study System Usability Questionnaire (PSSUQ). User experience was positive, with a median of 6 TAM points (interquartile range: 1) and beneficial median total, and subscale PSSUQ scores. The initial standard practice assessment of the vignettes yielded 65% correct results for diagnosis and 45% for scoring. The ‘eGVHD App’ significantly increased diagnostic and scoring accuracy to 93% (+28%) and 88% (+43%), respectively (both P<0.05). The same trend was observed in the repeated analysis of case 2: accuracy improved by using the App (+31% for diagnosis and +39% for scoring), whereas performance tended to decrease once the App was taken away. The ‘eGVHD App’ could dramatically improve the quality of care and research as it increased the performance of the whole user group by about 30% at the first assessment and showed a trend for improvement of individual performance on repeated case evaluation.

Improving medication adherence: The proof of the pudding will be in the eating

Shemesh et al. conducted a unique prospective multisite study, following the medication adherence behavior of 400 pediatric and adolescent liver transplant recipients who were on average 6.8 years after transplant (range, 1.0-17.4 years). In their article, included in this issue, the authors investigated trajectories in adherence to tacrolimus from year 1 to year 2 of the Medication Adherence in Children Who Had a Liver Transplant (MALT) study data collection, with a Medication Level Variability Index (MLVI) of > 2 signaling nonadherence. We can distill at least 3 important messages from their analyses. First, 24.5% of the participants were nonadherent in the first year and 28.5% in the second year of observation, suggesting that, at population level, nonadherence tends to increase over time. Second, the authors demonstrated that nonadherence is not a stable behavior, as approximately 1 in 4 nonadult liver transplant patients (n5 70/294; 23.8%) switched their medication behavior, going from being adherent to nonadherent (n5 41/294; 13.9%), or slightly less frequently the other way around (n5 29/294; 9.9%). Third, the odds of being nonadherent in the second year were 6.5 times higher for patients being nonadherent already in the first year of the study, and these patients were also at the highest risk for developing a late acute rejection. These observations largely confirm existing evidence. Other prospective studies, admittedly predominantly in the field of adult transplantation, likewise showed that adherence behavior might fluctuate over time. Using electronic monitoring as a continuous and sensitive measure of medication nonadherence, Nevins et al. observed that even kidney transplant recipients with the highest medication adherence immediately after transplant occasionally missed doses over time. Moreover, other studies demonstrated that adherence seems to deteriorate with longer posttransplant time. The Swiss Transplant Cohort study with 1505 adult solid organ transplant recipients observed a continuous increase in immunosuppressive medication from 6 months to 3 years after transplant. Because the MALT study included patients with a widely ranging posttransplant status, the authors could not ascertain the impact of posttransplant time on adherence trajectories. Finally, several research groups already demonstrated the detrimental impact of medication nonadherence on posttransplant clinical outcomes. The dose-response association between nonadherence and late acute rejection noted in the MALT study certainly further contributes to this evidence base, particularly in the field of pediatric transplantation. The authors subsequently conclude eloquently that “nonadherence is likely to persist in the absence of interventions, and that monitoring of adherence and interventions to improve it should be expected to last for years if transplant outcomes are to be improved.” We cannot concur more with this conclusion, and almost every adherence article in transplantation iterates the same message. The problem, however, is that this plea for a better adherence management in posttransplant longterm care does not seem to result in improved practice patterns. Transplant programs see recipients once stable as outpatients only occasionaly. These contacts are often brief and without screening for behavioral or psychological problems. These practice patterns presumably prevail at the 8 centers participating in the MALT study. More specifically, the Abbreviations: COMMIT, Consensus on Managing Modifiable risks in Transplantation; MAESTRO-Tx, Medication Adherence Enhancing Strategies in Organ Transplantation; MALT, Medication Adherence in Children Who Had a Liver Transplant; MLVI, Medication Level Variability Index.

Shedding light on an unknown reality in solid organ transplant patients’ self-management: A contextual inquiry study

Traditional quantitative and qualitative research methods inadequately capture the complexity of patients’ daily self‐management. Contextual inquiry methodology, using home visits, allows a more in‐depth understanding of how patients integrate immunosuppressive medication intake, physical activity, and healthy eating in their daily lives, and which difficulties they experience when doing so. This mixed‐method study comprised 2 home visits in 19 purposively selected adult heart, lung, liver, and kidney transplant patients, asking them to demonstrate how they implement the aforementioned health behaviors. Meanwhile, conversations were audio‐taped and photographs were taken. Audio‐visual materials were coded using directed content analysis. Difficulties and supportive strategies were identified via inductive thematic analysis. We learned that few patients understood what “sufficiently active” means. Physical discomforts and poor motivation created variation across activity levels observed. Health benefits of dietary guidelines were insufficiently understood, and their implementation into everyday life considered difficult. Many underestimated the strictness of immunosuppressive medication intake, and instructions on handling late doses were unclear. Interruptions in routine and busyness contributed to nonadherence. We also learned that professionals often recommend supportive strategies, which patients not always like or need. This contextual inquiry study revealed unique insights, providing a basis for patient‐tailored self‐management interventions.