To our knowledge, this is the first study to comprehensively explore healthcare staff’s understanding, experience and perceptions of oral health outcomes and accessibility to dental care in one subspecialty across a whole healthcare system. Overall, there appears to be a general lack of training, confidence and understanding, but a desire to better the oral health of their patients.

These learning needs are attainable with modest resource as there are only a small number of presentations that are frequently encountered. Paediatric nephrology team members have a role in advocating for good oral health of their patients as well as signposting any patients with oral health issues to relevant dental professionals. Identification of common oral diseases is lacking and could be considered outside the scope of practice of a paediatric nephrologist; however, similar skills already exist as there is a high degree of confidence and practice in areas such as identifying (DIGO) [15]. Fortunately, serious adverse oral health outcomes such as sepsis from a dental source and/or the presence of an oral cancer were rarely reported, although this likely reflects the low prevalence of these conditions in children in general [34]. Ultimately, this study suggests that nephrology teams are already considering the oral cavity, often a known barrier with other medical professional teams [22,23,24,25,26,27,28], but require some additional training to identify more common dental issues. Building on these skills would permit them to act as vital safety nets and signpost appropriately for this patient cohort.

Our study has identified service gaps. Few paediatric KTRs receive pre-transplant dental assessment although this has not been mandated by national guidance. However, given the rigorous treatment required [13, 35], it would seem reasonable as our survey showed that some patients had transplants delayed for dental treatment. There is clear guidance for paediatric oncology [36] and cardiac [37] patients to have an oral screen prior to any treatment or transplant. Development of national oral health standards could help reduce variability in care and ensure adequate commissioning of dental services, with this approach already being successfully implemented for CYP with congenital cardiac and oncological diseases [36, 37].

There are clear benefits if both dental and nephrology teams work together to co-ordinate screening and/or treatment appointments to overcome the apparent geographical and financial barriers that parents face. Defining clear referral pathways [13, 38] and providing appropriate lines of communication between the teams will support this joint effort. An example of such a pathway has recently been developed in the North East of England [38]. It is acknowledged that this may be more difficult in areas with reduced paediatric dentistry provision [39]. It would be reasonable that in such circumstances, primary dental care providers could undertake a dental screen. Unfortunately, there is currently a widely acknowledged NHS dental access crisis [18, 19]; however, there appeared to be very few cases where nephrology teams noted that their patients struggled to access dental care. This is perhaps due to most respondents not routinely asking their patients about accessing dental care and may not therefore be a true reflection of the problems these patients may face.

Understanding the knowledge and perceptions of oral health outcomes amongst paediatric nephrology teams is not just relevant to the UK. Despite the variation in global prevalence [40], a proportion of patients with CKD across different countries will exhibit dental disease. The realistic impacts on these patients would be similar to those children with CKD in the UK, thus acknowledging the relevance of these findings internationally. It could be expected that each country’s healthcare system could influence these findings. The NHS in the UK is a publicly funded healthcare system with no cost to the patient/parent at point of delivery for medical and dental care. This makes it easier for nephrology teams to refer patients with CKD for oral health screening and dental management. However, this is not true of all healthcare systems as significant variation in the levels of co-payment for managing children with CKD and/or oral disease will exist [41]. Co-payment charges, or limitations in insurance coverage, could make it challenging for nephrology teams to refer for oral issues, with parents being forced to focus on medical care needs only. As a result, in these situations, upskilling nephrology teams to provide basic preventive oral health care messages could have demonstrable benefits to this patient cohort. Hypothetically, this could improve a patient’s quality of life, have less impact on renal outcomes and treatments and potentially reduce the financial burden to the family.

The strength of this unique mixed-methods study was comprehensive coverage from all UK specialist teams, and it was truly multidisciplinary. However, it is acknowledged that this study was bespoke to the UK’s NHS healthcare system. Replicating this study in other countries would permit greater understanding of the oral/dental interface, at a global level, whilst appreciating the training needs for nephrology teams pertinent to their patient cohort and the health system they work within. The study design was limited as some responses may be overestimated given that multiple members from the same unit may report the same patient. The questionnaire was intended to subjectively assess respondents’ perceptions, rather than objectively. However, it is acknowledged this could cause some bias; for example, the definitions of a mild, moderate and severe barrier found within Table 5 are open to interpretation. In addition, respondents’ perceptions of the burden of oral disease for CYP with kidney disease were assessed subjectively. Findings from this study would indicate the benefit of formally assessing the OHRQoL of children and young people with CKD using a validated patient-reported outcome measure. Similarly, thematic analysis was only completed on the free-text comments. Future research should focus on fully exploring these views using qualitative methods.