Page 147 - Exploring the Potential of Self-Monitoring Kidney Function After Transplantation - Céline van Lint

Self-monitoring: the reliability of patient-reported data 145
Strengths and limitations
To the best of our knowledge, this is the first study to assess adherence to a protocol of self-monitoring creatinine and to investigate the accuracy and reliability of patient generated creatinine data. Enabling patients to self-monitor kidney function at home would have important advantages, especially for patients living in remote areas. There are, however, some limitations that must be considered when interpreting our findings. First, the study was conducted at a single institute. As each hospital has its’ own way of delivering care, results might be different when conducted in other institutions. Our findings do, however, resemble what has previously been found in other disease populations. Second, participation in this study was voluntary and we selected patients with access to the internet. Therefore, it is possible that our patients had an above-average motivation to self-monitor. It is therefore likely that the current findings provide a conservative estimate of the true incidence of non- adherence and inaccuracy. In line with this, patients reported very strong intentions to engage in self- monitoring both at the start and after four months into the trial[38]. Their intention was found to be especially associated with their overall affective reaction towards using the system[38]. A considerable number of eligible patients had to be contacted to inform whether they were interested in study participation instead of giving informed consent immediately. However, the limited variance found in level of intention to engage in self-monitoring suggests that patients who had to be contacted were not more hesitant to engage in self-monitoring than patients who provided immediate informed consent.
Last, the way (non-)adherence was determined is arbitrary to some extent. As the importance of (very) frequent monitoring differs per subpopulation and parameter of interest, no gold standard for what can be considered adherent is available. High blood pressure, for example, needs to be present over a longer period of time before becoming detrimental, while an increasing level of creatinine can be indicative of a rejection episode leading to irreversible damage or even loss of the transplanted kidney if not quickly noticed.
Implications
This study shows that level of adherence to a protocol of self-monitoring creatinine in the first year after kidney transplantation was generally good, although adherence declined over time. In addition, our results suggest that measuring every day in the first period after transplantation might be too burdensome. Further, 90% of data was shown to be accurately reported. In line with previous findings, however, several patients reported more favourable data than they actually measured. This suggests
6