Development of a Kidney Paediatric Patient Reported Experience Measure: Developing and validating an experience measure for under 18 year olds

Chronic Kidney Disease (CKD) requiring kidney replacement therapy (KRT; dialysis or transplant) affects 63.8 per million age related population in under 16-year-olds in the UK, equating to 812 patients (Renal registry data 2020 data). A similar number of children and young people (CYP) have stage 4 CKD and are being prepared for KRT in the 13 centres across the UK. A significant proportion of CKD in children is due to congenital abnormalities and therefore many more CYP are receiving care in order to prevent or delay the onset of KRT. CKD is a substantial health problem which, for CYP, is associated with adverse outcomes during childhood and in later life, including impaired growth(1), bone disease(2), anaemia(3), hypertension(4), and cardiovascular morbidity(5-8).
Progression to long-term kidney failure requires treatment with KRT for survival, with children needing ongoing specialist kidney care throughout their lives. CKD presents care providers with the challenge of addressing not only the primary renal disorder but also comorbid conditions affecting growth and development(22). Capturing the experience of this patient group is important in determining the impact of current care but also informing future care. This can be difficult to rate by proxy as it is unclear whether respondents are rating the child’s experience, how they think the child would respond, or providing their own perspective on the child’s experience(23).
One of the main domains of the National Health Service (NHS) Outcomes Framework is that people accessing NHS healthcare have a positive experience of care(10). Patient reported experience measures (PREMs) are tools which allow healthcare systems to receive feedback on care from end users, and evaluate perceptions of how patient-/family-focused, efficient, and helpful services are(11). PREMs are also important in evaluating interventions and policies, as well as planning health service allocation and delivery(11-12), with national reports highlighting the importance of developing tools suitable for children(13-14).
PREM development and testing, however, is often focused on capturing data from adult patients. In 2016, the Kidney Patient Reported Experience Measure (PREM), was developed to capture the experiences of specialist kidney care nationally for UK-based adult patients. Supported by the UK Kidney Association, UK Renal Registry, Kidney Care UK, and developed in conjunction with the University of Hertfordshire, the kidney PREM has become a key measure to help specialist kidney units understand more about their patients’ experience of care and identify where improvements can be made. It is the largest collection (>32 000 responses to date) of CKD patients’ experience of care and provides stakeholders with a nationally representative picture of patient experience(19). However, with a target population of 17+, the existing kidney PREM excludes paediatric patients, as children present a range of different challenges for the national healthcare service compared to adults, which needs appropriate exploration(24).
A pilot paediatric kidney PREM, using relevant questions validated in development of the adult kidney PREM, has been performed in CYP aged 12 years and older, and parents/carers of CYP of all ages. These questions were not suitable in their current format for those under 12 years of age, and as there is no previously published PREM for children under 12 years with CKD, there is no established means to report their patient experience.