Patients and their families and carers should have timely access to the expertise, advice and support of the full range of renal healthcare professionals within the multiprofessional team. The characteristics of such a service are described in the National service framework for renal services for England. The Renal Association has produced guidance on best practice in the management of patients with kidney disease.
Involving patients in decisions about their treatment
Involving patients in their care is an important part of practice, and enhances patient confidence. The needs of patients and their families and carers should be assessed on a regular basis to make certain that appropriate support is provided so that they can be involved in decisions about treatment.
Many decisions facing people with kidney disease are ‘preference sensitive’ – the choice depends not just on clinical outcomes but also on the person’s values and preferences. Such discussions can be complex and time-consuming, but ensure that the individual is involved in the decision-making. It is important to provide information in a range of languages appropriate to the local population and to take account of religious needs. This assistance takes many forms including direct discussions with members of the multiprofessional team, individually, or in group sessions, and through written and audiovisual materials and patient decision aids. Most UK renal units offer patients access to their own test results and clinic letters using PatientView.
Renal units require specialised facilities for outpatient haemodialysis – at the hospital base of the renal unit, in satellite units in other hospitals or freestanding in the community. Specialised wards are also required for the care of inpatients with renal disease, including a high-dependency facility and facilities for renal transplantation. Isolation facilities are required for the care of patients with highly transmissible diseases receiving haemodialysis and there is good practice guidance available. Patient transport to and from haemodialysis sessions remains one of the least satisfying parts of the patient experience.
In addition, renal units should have the information technology (IT) necessary to perform internal audit and to submit required data to the UK Renal Registry. Most renal units are highly computerised, using a range of IT systems. This information should be transferred from one renal unit to another if a patient moves around the country.
Patient support groups
Many renal units have active local kidney disease associations that provide local information and support. The controlling council of the National Kidney Federation (NKF) brings together 63 kidney patients’ associations. The NKF campaigns for improvements to renal provision and treatment, and provides support and information for patients through its website, information leaflets on kidney disease and the National Kidney Patients’ Helpline. The British Kidney Patient Association provides support, information and grant aid both to individuals and to renal centres, as well as supporting research that is likely to be of direct benefit.
The Kidney Patient Guide forum is a public forum where anyone affected by kidney disease, whether patients or their families and friends, can exchange information and find support. Kidney Research UK also provides valuable patient information.
Accessing data for quality improvement
Information technology is integral and essential to the practice of nephrology. Most renal units are highly computerised, using a range of IT systems, which vary in complexity from basic databases of pathology results with patient details, to highly developed systems which incorporate electronic patient records, electronic prescribing, dialysis observations and clinical annotations, vascular access records, individualised dialysis prescription and audit capability. This information should be transferred from one renal unit to another if a patient moves around the country. Renal units should have the information technology necessary to perform internal audit and to submit obligatory data to the UK Renal Registry. The UK Renal Registry (UKRR) is part of the Renal Association, a not-for-profit organisation registered with the Charity Commission.
The UK Renal Registry provides high-quality professionally led audits of the quality of care of patients with established renal failure, and is developing plans to extend its work to patients with acute kidney injury, advanced kidney disease, and conservative care. It is also piloting measurement of the quality of shared decision-making, quality of life, and patient experience.
Its clinical databases are open to requests from researchers. The UKRR collects, analyses and reports on data from 71 adult and 13 paediatric renal centres. Participation is mandated in England through the NHS National Service Specification and the chief executive of each trust is responsible for adherence to this contract. The UKRR is principally funded through an annual capitation fee levied on dialysis units for each renal replacement therapy patient.
Data are collected on a quarterly basis via an automatic download from renal unit databases. This process will change significantly in the future with the launch of the UK Renal Data Collaboration (UK RDC).
The Clinical Practice Guidelines Committee was established by the UK Renal Association to prepare guidelines for the management of patients with renal disease and help identify the data to be collected by the Renal Registry. The Renal Association has produced guidance on best practice in the management of patients with kidney disease since 1995.