The SPEAK Study focuses on young adults with end-stage kidney disease (ESKD) in the UK. In a recent article published in AJKD, Hamilton et al (Open Access) identified demographic, clinical, psychosocial, and quality of life measures in this unique patient group. AJKD Social Media Editor, Dr. Timothy Yau (AJKDBlog), interviewed first author, Dr. Alexander Hamilton (AH), about the paper.
AJKDBlog: I like that your paper starts by defining “young adults” between the ages of 16-30. I guess by that definition, I am an “old” adult! What prompted your interest to study this specific age group?
AH: I think that many involved in the care of young adults are aware that this is a unique group. There has been a lot of focus on the transition of those transferring from pediatric care, but young people presenting directly to adult services are comparatively neglected. There has been a lack of quality data to underpin the provision of healthcare services tailored to this age group.
AJKDBlog: You discuss how this group is particularly vulnerable. Much more attention has been spent on childhood-onset kidney diseases, and as you mentioned above, the transition to adult services for younger patients. But this “young adult” group is at risk not only for death, but also for kidney transplant loss and psychosocial well-being. How did your survey focus on this latter aspect?
AH: Our survey explored sociodemographics, psychological health, and lifestyle. It contained well-validated scales assessing quality of life, wellbeing and psychological morbidity (to name a few). Furthermore, we could compare the data to that of the age-matched general population, using comparator data from the Health Survey for England.
AJKDBlog: I’m not too familiar with the UK Renal Registry (UKRR), but it sounds similar to the US Renal Data System (USRDS). How did you select the study participants, and how did you collect the survey data?
AH: The UKRR extracts clinical data on all UK RRT patients for audit, benchmarking, planning, policy, and research. Our participants were identified and approached by the recruiting centers (every UK center took part, with all but two recruiting patients). Participants were transplanted or were receiving permanent dialysis, and aged 16 to 30 years. We used an online survey which participants accessed via email invitations or through a weblink.
AJKDBlog: Did you account for response bias from your participants, given that the majority of your responders were white and of a higher socioeconomic status?
AH: By use of the UKRR, we knew the characteristics of all prevalent UK young adults with a transplant or receiving dialysis and could identify potential bias in our survey sample. We then weighted the survey data so that under-represented groups were upweighted in the analysis and vice-versa, to make the findings generalizable.
AJKDBlog: There are a lot of data that were collected from patients on hemodialysis/peritoneal dialysis/transplant, with multiple etiologies for their kidney disease. Ultimately, what is the take-away from the survey data you collected?
AH: Compared to the general population, we found that young adults on RRT were less likely to be in a relationship and have their own children and more likely to live in the family home, receive no income, and be unable to work for health reasons. They had poorer quality of life, worse mental wellbeing, and twice the likelihood of having a psychological disturbance. However, young adults on RRT reported more positive lifestyle behaviors, with less tobacco, alcohol, drug abuse, gambling, and crime.
AJKDBlog: What was most striking to me was the patient-reported outcomes that came out of your data, with regards to quality of life. Issues like body image, employment difficulties, social isolation, and intimacy were all noted in your paper. How does this awareness inform us as clinicians as we care for this vulnerable population?
AH: For me this shows that for young adults, we need to think beyond the standard renal care provided to patients on RRT. We need to design our services to encompass the biopsychosocial needs of this group. Some examples of successful care models exist which incorporate co-production, social workers, youth workers, psychologists, peer mentoring, and the provision of clinics away from the hospital. However, we lack the evidence to know which interventions are beneficial, cost-effective, practical and acceptable.
AJKDBlog: Last question: Do you have any plans for future analysis using this collection, and any advice for researchers who are interested in this type of quantitative data?
AH: We sought permission to contact our cohort again in the future and would ideally follow them up to track changes in psychosocial health over time. My advice is to invest time in good planning and to select questionnaire scales carefully. Being aware of what data survey scales give you and how you will analyze it is fundamental. Whilst the quantitative data allows researchers generalizable estimates and to test models, it lacks the depth of qualitative data, so a mixed methods approach is valuable to triangulate data and maximize the value of this type of data.
AJKDBlog: Thanks so much for doing this interview!
Follow Dr. Hamilton @_ajhamilton
Title: Psychosocial Health and Lifestyle Behaviors in Young Adults Receiving Renal Replacement Therapy Compared to the General Population: Findings From the SPEAK Study
Authors: A.J. Hamilton, F.J. Caskey, A. Casula, Y. Ben-Shlomo, and C.D. Inward