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Research Priorities

We worked with the multiple stakeholders across Wales to produce the research priorities integrated health and social services over the next 5 years 2020-2025.  See below abstract to paper and the research priorities.  You can read the full paper here, https://bmjopen.bmj.com/content/10/9/e036872

Objectives To identify the shared research priorities of patients, caregivers and multidisciplinary renal health and social care professionals across Wales for integrated renal health and social care in Wales.

Design Research priority setting exercise adapted from the James Lind Alliance national priority setting partnership framework in UK healthcare.

Setting Two workshops: one in North Wales with patients, caregivers and multidisciplinary renal health and social care professionals and one in South Wales with the Welsh Renal Clinical Network (commissioners of renal services in Wales). Additional input provided from stakeholders via email correspondence and face to face communications.

Participants Academics n=14, patients n=16, family/carers n=6, multidisciplinary renal healthcare professionals n=40, local authority councils n=3, renal charities n=6 wider third sector organisations n=8, renal industries n=4, Welsh government social care n=3, renal service commissioners n=8.

Results 38 research priority questions grouped into 10 themes were agreed. The themes included: (1) integrating health and social care, (2) education, (3) acute kidney injury, (4) chronic kidney disease and cardiovascular disease, (5) transplantation, (6) dialysis, (7) personalised medicines, (8) cross-cutting priorities, (9) specific social contexts and (10) transitional services and children. Research questions were broad and covered a range of health and social care topics. Patient and professional perspectives broadly overlapped. Research priority setting activities revealed gaps in knowledge in overall service provision and potential areas for service improvement.

Conclusions Mapping priorities in health services and social care highlighted the research needed to support renal health services delivery and commissioning in Wales.

 

Results of the Research Priority Setting exercise in health services and social care research in Wales

Integrated health and social care

 

·      What is the best clinical and most cost-effective frequency of review for people on peritoneal dialysis, hemodiafiltration, haemodialysis or conservative management?  What are patients’ and carers’ views on and experiences of the frequency of review for people on peritoneal dialysis, hemodiafiltration, haemodialysis or conservative management?

·      What is the optimum timing of laparoscopic and percutaneous peritoneal dialysis access creation?  What are patients’ and carers’ views on and experiences of the optimum timing of laparoscopic and percutaneous peritoneal dialysis access creation? 

·      What is the clinical and cost effectiveness of having a keyworker (interpreted as ‘named nurse’) present in the context of renal replacement therapy (RRT)?  What support do patients want and how could it best be integrated into routine care (e.g. social prescribing and what is the role of social prescribing)?

·      What are the adverse health and social care effects of haemoglobin (Hb) levels in older people with kidney disease?

·      What works best in Multi-Disciplinary Team care and how best to integrate MDT renal care into clinical care pathways?

·      What are the health and social care outcomes of living with obesity and kidney disease?

·      What are the health and social care outcomes of living with diabetes and kidney disease?

Education

 

·      Does the provision of education and supportive interventions to people with chronic kidney disease (CKD) by healthcare professionals increase patients’ skills and confidence in managing their conditions and improve clinical outcomes?   What are patients’ and carers’ views on and experiences of the provision of education and supportive interventions and how can we best support patients with decision making?

·      What are different groups (women, minority, disadvantaged, special needs, deprivation, young people etc.) knowledge, needs and understandings and how can we make better education programmes for these groups?

Acute Kidney Injury

 

·      How do we develop and implement suitable markers for early detection of AKI?

·      How do we improve ways to identify people at risk of AKI?

Chronic Kidney Disease and cardiovascular disease.

 

·      What is the clinical and cost effectiveness of cardiac assessment before transplantation? What are patients’ and carers’ views on and experiences of cardiac assessment before transplantation?

·      How do we reduce cardiovascular risk in the renal population?

·      What are the views and experiences of people with cardiovascular disease while on dialysis?

Transplantation

 

·      What is the best clinical and most cost-effective strategy for timing of pre-emptive transplantation?  What are patients’ and carers’ views on and experiences of strategies for timing of pre-emptive transplantation?

·      What are the health and social care outcomes of older/frailer people who have had a transplant?

·      What is the optimal BMI cut off for renal transplant from the multiple (patient, carer, clinical) perspectives? 

·      What are the patient and carer views and experiences of post-transplant psycho/social support post-transplant across Wales?

Dialysis

 

·      What are the biological and psychosocial effects of being on dialysis?

·      What are the health and social care benefits of exercise while on dialysis? 

·      What are the health and social care benefits of diet while on dialysis?

·      What are the best ways to reduce complications of peritoneal dialysis? What are patients views and experiences of the complications of peritoneal dialysis?

·      How do we preserve vascular access in people with kidney disease? 

·      What are patients, carers and family members views, experiences and understandings of new technological innovations in dialysis?

·      What are patients, carers and professionals’ views and experiences of ‘extended’ dialysis on their health and social care?

Personalised medicines

 

·      What are the patients, cares and professionals’ views and experiences of personalised medicine?

·      What are the best medicines for palliative care and people with CKD?

Cross cutting

 

·      What are the value of patient peer support groups?

·      How do we maximise the use of the Rare Renal Disease Registry (RADAR) and increase the opportunity for people to participate in RADAR? 

·      What are the best ways to treat people with cognitive impairments, and undiagnosed impairments e.g. dementia?

·      How do we improve the use and effectives of frailty scores in Vital Data (the All Wales Renal Audit data) in patient care? 

·      How do we improve the translation of renal audit data into high quality research publications? 

Specific social contexts

 

·      How best to integrate health promotion into routine care pathways?

·      What is the role of the renal social worker in renal care in Wales?

·      What are the social care needs of older people with CKD?

Transitional services and children

 

·      What are patients, carers views and experiences of transition services across Wales?

·      Children and renal disease – the research priorities can be adjusted to include children where appropriate.

Service evaluation and improvement questions

 

·      What does the renal patient pathway look like in Wales from the multiple perspectives?

Read in full here, https://bmjopen.bmj.com/content/10/9/e036872