Participatory co-design and normalisation process theory with staff and patients to implement digital ways of working into routine care: the example of electronic patient-reported outcomes in UK renal services.

BACKGROUND: Successful implementation of digital health systems requires contextually sensitive solutions. Working directly with system users and drawing on implementation science frameworks are both recommended. We sought to combine Normalisation Process Theory (NPT) with participatory co-design methods, to work with healthcare stakeholders to generate implementation support recommendations for a new electronic patient reported outcome measure (ePRO) in renal services. ePROs collect data on patient-reported symptom burden and illness experience overtime, requiring sustained engagement and integration into existing systems. METHODS: We identified co-design methods that could be mapped to NPT constructs to generate relevant qualitative data. Patients and staff from three renal units in England participated in empathy and process mapping activities to understand 'coherence' (why the ePRO should be completed) and 'cognitive participation' (who would be involved in collecting the ePRO). Observation of routine unit activity was completed to understand 'collective action' (how the collection of ePRO could integrate with service routines). RESULTS: The mapping activities and observation enabled the research team to become more aware of the key needs of both staff and patients. Working within sites enabled us to consider local resources and barriers. This produced 'core and custom' recommendations specifying core needs that could be met with customised local solutions. We identified two over-arching themes which need to be considered when introducing new digital systems (1) That data collection is physical (electronic systems need to fit into physical spaces and routines), and (2) That data collection is intentional (system users must be convinced of the value of collecting the data). CONCLUSIONS: We demonstrate that NPT constructs can be operationalised through participatory co-design to work with stakeholders and within settings to collaboratively produce implementation support recommendations. This enables production of contextually sensitive implementation recommendations, informed by qualitative evidence, theory, and stakeholder input. Further longitudinal evaluation is necessary to determine how successful the recommendations are in practice.

Regional anaesthesia practice for arteriovenous fistula formation surgery.

We conducted a survey and semi-structured qualitative interviews to investigate current anaesthetic practice for arteriovenous fistula formation surgery in the UK. Responses were received from 39 out of 59 vascular centres where arteriovenous access surgery is performed, a response rate of 66%. Thirty-five centres reported routine use of brachial plexus blocks, but variation in anaesthetic skill-mix and practice were observed. Interviews were conducted with 19 clinicians from 10 NHS Trusts including anaesthetists, vascular access and renal nurses, surgeons and nephrologists. Thematic analysis identified five key findings: (1) current anaesthetic practice showed that centres could be classified as 'regional anaesthesia dominant' or 'local anaesthesia/mixed'; (2) decision making around mode of anaesthesia highlighted the key role of surgeons as frontline decision makers across both centre types; (3) perceived barriers and facilitators of regional block use included clinicians' beliefs and preferences, resource considerations and patients' treatment preferences; (4) anaesthetists' preference for supraclavicular blocks emerged, alongside acknowledgement of varied practice; (5) there was widespread support for a future randomised controlled trial, although clinician equipoise issues and logistical/resource-related concerns were viewed as potential challenges. The use of regional anaesthesia for arteriovenous fistula formation in the UK is varied and influenced by a multitude of factors. Despite the availability of anaesthetists capable of performing regional blocks, there are other limiting factors that influence the routine use of this technique. The study also highlighted the perceived need for a large multicentre, randomised controlled trial to provide an evidence base to inform current practice.

'How long have I got doctor?' The development and validation of a new prognostic model.

In the current issue of Kidney International, Floege et al report the development and external validation of a prognostic score for patients starting haemodialysis. The model performs well and appears robust in various sub-groups and in external validation. This commentary takes a systematic approach to considering the generalisability of the results and applicability of the prognostic score to wider clinical practice.

The EQUAL study: a European study in chronic kidney disease stage 4 patients.

The timing of the start of dialysis in elderly patients is driven by the desire to optimize the quantity and quality of life. Limited data exist on how the level of renal function, and uraemic signs and symptoms can be used to determine when dialysis should be initiated in elderly patients. EQUAL, an international prospective cohort study, aims to address these issues. To this end, it will enroll 3500 patients >65 years of age with CKD of various aetiologies under the care of nephrologists. These patients will be followed until death, discharge from the nephrology clinic to primary care or until the end of the observation period after 4 years of follow-up. At the time of enrollment, patients must have an estimated glomerular filtration rate (eGFR) of 20 mL/min/1.73 m(2) or lower, but should not yet be on dialysis. Standardized data collection will include demographics, lifestyle, comorbidities, uraemic signs and symptoms, nutritional status, medication and routine blood and urine biochemistry. It will also comprise quality of life data, information on decision making including patients preferences and patients satisfaction.

alpha1-antitrypsin (A1AT) deficiency presenting with IgA nephropathy and nephrotic syndrome: is renal involvement caused by A1AT deposition?

The role of severe a1-antitrypsin (A1AT) deficiency in the predisposition of early-onset pulmonary emphysema and juvenile hepatic cirrhosis is well-established. Associated glomerulonephritis is unusual although it is well-recognized in children and young adults with the severe phenotype. We report the first adult case of A1AT deficiency presenting with nephrotic syndrome secondary to IgA nephropathy and explore the direct role of A1AT deposits in the pathogenesis of the renal involvement.

Patients with diabetic nephropathy on renal replacement therapy in England and Wales.

BACKGROUND: The incidence of patients with diabetic nephropathy (DN) who start renal replacement therapy (RRT) is increasing. AIM: To describe the characteristics and survival of patients with DN starting RRT in the UK. DESIGN: Retrospective cohort study. METHODS: We analysed data for incident patients on RRT in centres participating in the Renal Association UK Renal Registry (UKRR), 1997 -2004, comparing DN vs. non-DN patients with regard to survival, social deprivation, ethnicity, gender, and age, using Cox regression models. RESULTS: DN was the most common renal disease (19%) in the 20 532 patients starting RRT. The majority of patients with DN (77%) were Caucasian. Within the Caucasian population, DN patients were more likely to be from a socially deprived area (p < 0.0001). About 20% were referred <3 months before starting RRT. The difference in crude survival was greatest in younger patients (5-year survival was 56% (DN) vs. 85% (non-DN) in patients aged 18-54 years, and 17% (DN) vs. 28% (non-DN) in patients aged >or=65 years). Despite adjusting for gender, age, treatment modality, social deprivation, referral and co-morbidities, the long-term prognosis for DN patients aged 18-54 years was worse (adjusted hazard ratio 2.13, 95%CI 1.23-3.67) than for older age groups. DISCUSSION: Patients with DN starting RRT are more likely to come from socially deprived areas. Relative risk of death is greatest in working-age DN patients and is not fully explained by recorded co-morbidity. This emphasizes the need for focused diabetes care in poorer areas, and assessment of quality of care of diabetic patients on RRT.

Social deprivation and survival on renal replacement therapy in England and Wales.

This study examines the association between social deprivation and patient characteristics and outcomes in a nationally representative cohort of incident renal replacement therapy (RRT) patients. All Caucasian patients reported to the UK Renal Registry between 1997 and 2004 by centers in England and Wales with high data completeness were included. Social deprivation was assessed using the Townsend index. Socially deprived patients were more likely to be referred late. They were less likely to receive peritoneal dialysis (25.1 vs 34.8% on day 1, P trend <0.0001) or a renal transplant (5.3 vs 12.4% at 1 year, P trend <0.0001), and were less likely to attain UK Renal Association standards for hemoglobin and phosphate at 1 year. Crude survival decreased significantly with increasing deprivation for patients under the age of 65 years, but not for those aged 65 years and above (likelihood ratio for age-social deprivation interaction P<0.0001). Social deprivation was significantly associated with poorer survival after adjustment for age, gender, and cause of renal failure. After adjusting for baseline co-morbidity, social deprivation was no longer associated with poorer survival. Baseline differences in co-morbidity seem to explain poorer crude survival in incident Caucasian RRT patients from socially deprived areas in England and Wales. Differences also exist in some processes of care and intermediate outcomes, which may be amenable to intervention.