There are a number of surveys that routinely gather feedback from children and young people, but none specifically include diabetes care. The National Paediatric Diabetes Audit (NPDA) contains a patient experience survey element, but the extent to which it can inform service delivery, and care improvement for children and young people is limited. Therefore, this research aimed to develop and assess the validity of a new paediatric Patient Reported Experience Measure (PREM) for diabetes care, to be used in the NPDA. A PREM is a survey that allows patients to self-report on aspects of their care.
There were three main challenges this research was aiming to overcome:
Existing national patient surveys such as the CQC National Patient Survey Programme and the GP Patient Survey do not specifically ask about children’s diabetes care.
Concerns around the existing patient experience survey and whether the questions were designed with children in mind.
One challenge with understanding paediatric care is whom to speak to – parents, children or both? At Picker, we are always keen on hearing both views as they sometimes differ. What is essential to parents may not be what matters to children, so we adapted the questions for the different groups.
Five focus groups were conducted with 25 participating diabetic children and young people and their parents to explore recent diabetes care experiences. PREM questions were drafted with clinical insight from an advisory group, including paediatric endocrinologists. The PREM was cognitively tested with eight children and young people, and eight parents to make sure that the language was appropriate, and the questions were interpreted as intended. An online PREM methodology was then trialled with 12 paediatric diabetes clinics across England and Wales.
The online link and QR code was shared with young patients and parents via electronic bulletins, on posters in clinics and using other promotional materials, allowing the survey to be completed on people’s own devices away from the clinic. Tablets were also shared within clinic settings.
All children, young people and their parents under the care of a paediatric diabetes unit were eligible to participate. PREM validity was assessed by exploring patterns in the pilot data, including how individual questions were answered (for example the percentage of people failing to answer; how similar people’s responses were) in addition to patterns in responses to different questions (inter-item correlations).
Changes were recommended to question wording to improve the survey, along with removing questions that were:
highly correlated (indicating they may measure the same aspect of care); an
The PREM is being implemented with a new set of scoring metrics that will allow diabetes care providers to understand the care experiences of their young patients and identify where they can make improvements. They will also be able to see how they perform relative to other NHS Trusts.
The improved PREM is now part of the NPDA in England and Wales that monitors care and outcomes for children and young people attending paediatric diabetes units. As the PREM is repeated in future audits, it will allow an understanding of where new initiatives are having an effect, and drive continual improvements in care.
Having a new PREM has enabled us to understand where children with diabetes need more support with self-care and any gaps in current service provision, both locally and nationally.
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