Measuring patients' experience with renal services in the UK: development and validation of the Kidney PREM.

BACKGROUND: Patient experience is a recognized aspect of quality of care for people with chronic kidney disease (CKD), but current patient-reported experience measures (PREMs) only focus on dialysis care. We developed and validated the Kidney PREM to assess patients' experience with renal services in secondary care for any CKD stage or treatment (transplant, haemodialysis and peritoneal dialysis). METHODS: We developed the Kidney PREM in two phases, informed by a multidisciplinary expert group to ensure face validity. We organized three national data collections (2016-8) to investigate item response profiles and to conduct exploratory and confirmatory analyses to assess internal consistency. We also explored content validity in cognitive interviews and evaluated test-retest reliability. Finally, we developed the Kidney PREM Short Form for more frequent measurement of patient experience to inform local service improvements. RESULTS: We analysed 32 959 responses across data collections, with the 2018 collection covering all 71 UK renal centres. The Kidney PREM final version consisted of 38 items grouped into 13 themes, all pertaining to one underlying dimension reflecting the construct of 'patient experience' with high internal consistency (Cronbach's α = 0.94). The Kidney PREM Short Form consisted of 15 items across the same 13 themes. CONCLUSIONS: The Kidney PREM supports the collection of reliable information on patient experience that people with CKD consider relevant, regardless of CKD stage or treatment modality. Kidney PREM data have the potential to guide local and national initiatives to improve patients' experiences with renal services in the UK and other countries.

Contributions of treatment centre and patient characteristics to patient-reported experience of haemodialysis: a national cross-sectional study.

OBJECTIVES: To examine the relative importance of patient and centre level factors in determining self-reported experience of care in patients with advanced kidney disease treated by maintenance haemodialysis (HD). DESIGN: Analysis of data from a cross sectional national survey; the UK Renal Registry (UKRR) national Kidney patient-reported experience measure (PREM) survey (2018). Centre-level data were obtained from the UKRR report (2018). SETTING: National survey of patients with advanced kidney disease receiving treatment with maintenance HD in UK renal centres in 2018. PARTICIPANTS: The Kidney PREM was distributed to all UK renal centres by the UKRR in May 2018. Each centre invited patients receiving outpatient treatment for kidney disease to complete the PREM. These included patients with chronic kidney disease, those receiving dialysis-both HD and peritoneal dialysis, and those with a functioning kidney transplant. There were no formal inclusion/exclusion criteria. MAIN OUTCOME MEASURES: The Kidney PREM has 38 questions in 13 subscales. Responses were captured using a 7-point Likert scale (never 1, always 7). The primary outcome of interest was the mean PREM score calculated across all questions. Multilevel modelling was used to determine the proportion of variation of the mean PREM score across centres due to patient-related and centre-related factors. RESULTS: There were records for 8253 HD patients (61% men, 77% white) from 69 renal centres (9-710 patients per centre). There was significant variation in mean PREM score across centres (5.35-6.53). In the multivariable analysis there was some variation in relation to both patient- and centre-level factors but these contributed little to explaining the overall variation. However, multilevel modelling showed that the overwhelming proportion of the explained variance (45%) was explained by variation between centres (40%), only a small proportion of which is identified by measured factors. Only 5% of the variation was related to patient-level factors. CONCLUSIONS: Centre rather than patient characteristics determine the experience of care of patients receiving HD. Further work is required to define the characteristics of the treating centre which determine patient experience.

The Reflective Fostering Programme-improving the wellbeing of children in care through a group intervention for foster carers: a randomised controlled trial.

BACKGROUND: The needs of children in care are a government priority, yet the evidence base for effective interventions to support the emotional wellbeing of children in care is lacking. Research suggests that supporting the carer-child relationship, by promoting the carer's reflective parenting, may be an effective approach to improving the wellbeing of these children. METHODS: The study comprises a definitive, superiority, two-armed, parallel, pragmatic, randomised controlled trial, with embedded process evaluation and economic evaluation, and an internal pilot, to evaluate the effectiveness, and cost-effectiveness, of the Reflective Fostering Programme. Randomisation is at the individual level using a 1:1 allocation ratio. The study is being conducted in local authority sites across England, and is targeted at foster carers (including kinship carers) looking after children aged 4 to 13. Consenting participants are randomly allocated to the Reflective Fostering Programme (intervention arm) in addition to usual support or usual support alone (control arm). The primary outcome is behavioural and emotional wellbeing of the child 12 months post-baseline, and secondary outcomes include the following: foster carer's level of stress, quality of life, reflective capacity, compassion fatigue and burnout, placement stability, the quality of the child-carer relationship, child's capacity for emotional regulation, and achievement of personalised goals set by the carer. DISCUSSION: A feasibility study has indicated effectiveness of the Programme in improving the child-carer relationship and emotional and behavioural wellbeing of children in care. This study will test the effectiveness and cost-effectiveness of implementing the Reflective Fostering Programme as an additional aid to the support already available to local authority foster carers. TRIAL REGISTRATION: ISRCTN 70832140 .