Young adulthood is associated with increasing independence, risk-taking behavior and decision making. Although our physical growth stops in late adolescence, brain development continues into our mid-twenties when complex decision-making is still maturing.
We surveyed young people with kidney transplants or on dialysis and found impaired independence and employment, poor quality of life, mental wellbeing and mental health when compared to the general population. We saw poorer outcomes for young adults on dialysis compared to those with a kidney transplant.
Five years on, we now wish to follow up these patients. Specifically, we want to find out whether being on dialysis is the cause of poorer psychological health, or whether this may be caused by other factors such as a lack of support, poor compliance or other medical problems. Evidence that a particular treatment is associated with poorer outcomes provides the justification for increased support and makes finding interventions to improve outcomes a priority.
We have permission to contact our original study recruits again, which would transform a cross-sectional study into a cohort study with a view to studying them longitudinally again in the future. We can use the existing study methodology that has been published in high-quality kidney journals. However, our original survey was comprehensive and detailed and could be considerably shortened. We aim to seek advice from patient partners regarding which are the most important items to retain for the 5-year follow up study. We believe ethical approval will be possible through the ‘proportionate review’ process as our survey materials are validated. We will also take measures to identify any participants that may have died so contact attempts would not be made in these cases, to avoid any potential distress.
We will use statistics to assess the importance of treatment changes and time period on the baseline and 5-year outcomes. This will tell us whether changing treatment is a risk factor for poorer psychosocial health outcomes, and whether this should be a opportunity to assess patients in their routine clinical care and intervene if necessary.
We plan that this work will support a junior doctor to gain broad research skills and lead to a body of work in this area. An example of a subsequent study could be to look at the psychosocial health of young people with chronic kidney disease to see if there is an effect of disease severity on outcomes, so that we can begin to profile patients in clinical practice to identify those at highest risk of poor outcomes. From this work we ultimately would aim to identify and develop interventions that are targeted to best address the issues identified.