This shared learning example can be used by organisations caring for patients with stage 5 CKD, to help them to develop a home dialysis programme. It demonstrates the pathway followed and the multi-disciplinary team approach (MDT) required enabling patients to make an informed decision about their choice of dialysis, in line with the current NICE guideline.
The renal unit at (Central Manchester Foundation Trust CMFT) Manchester Royal Infirmary (MRI) has a strong tradition of enabling home dialysis, and currently places 30% of incident patients on a home dialysis therapy (which is above the current UK average). The unit offers home haemodialysis (HHD), continuous ambulatory peritoneal dialysis (CAPD), automated peritoneal dialysis (APD) and assisted automated peritoneal dialysis (APD) as home therapy options. By using an expert-led, team approach the service is maintaining and growing a home dialysis programme.
This example was originally submitted to demonstrate implementation of NICE guideline CG125. It has been reviewed and the practice described in it remains consistent with the updated NICE guideline (NG107). The updated NICE guideline should be referred to if replicating the approach described in this example.
Aims and objectives
To ensure all patients with CKD stage 5 have access to information and education which enables them to participate fully in a shared decision making process, such that they are able to make an informed choice of dialysis modality in line with NICE guideline recommendations in section 1.3 of NG107.
The philosophy of the renal unit at MRI is that early kidney transplantation is the ideal therapy for CKD stage 5, but where this is not possible then home dialysis is the next best choice for suitable patients.
Evidence from publications and from the service at MRI suggests that with appropriate education and informed choice around 50% of all incident patients would choose a home therapy and specifically PD. MRI hope to translate this into practice and move towards a 40 or even 50% prevalence of home dialysis over the coming years.
Two particular challenges present themselves within this vision, the first being to fully develop a fast-track education system which enables informed choice of dialysis modality for those who present late. Providing a home dialysis programme requires dedicated staff, infrastructure, regular reviews of service and outcomes, strong educational and peer support programs, a strong MDT approach and availability of community support and herein lies the second challenge.
Pre-dialysis services have now become an integral part of care for patients with CKD stage 4-5, often made up of specialist nurses who provide the education and support for patients at this stage of their illness. It is crucial that these nurses have specialist training and knowledge - not just in dialysis therapies, but also in communication skills and the decision making process. Bias from healthcare professionals and peers has been shown to influence the decision making of patients and is difficult to overcome.
An MDT approach where patients are discussed within the team is vital so that all barriers can be discussed openly.
The objectives within the service at MRI were to:
- Agree a pathway that patients follow incorporating national service framework (NSF) 2004 guidance.
- Assess then deliver education in a format appropriate to the patient's physical, social, psychological and cultural needs, addressing patient preferences and appropriateness of individual treatments, including carers and family members as required.
- Provide ongoing support, monitoring and education working collaboratively with the multi disciplinary team, primary care and other specialist teams.
- Utilise a team with expertise in all treatments, advanced communication skills and knowledge of the decision making process, tools and decision aids.
Reasons for implementing your project
Nationally we have seen changes in the patterns of home dialysis therapies from a very high incidence of peritoneal dialysis (PD) and low HHD over 10 years ago, to a more recent decline in PD and growth in HHD. Until the late 1990s there was no multidisciplinary pre-dialysis team at MRI and decisions on dialysis therapies were largely physician led.
Decline in PD has been attributed to many factors including; the creation of a conservative management pathway for patients who do not wish to have dialysis treatment (end their lives on dialysis), a growth in live related donor transplantation, and a growth in HHD.
Prior to the introduction of the pre dialysis team there was no formalised pathway. When initially one member of staff was employed, baseline audit of patient numbers and choices made was conducted, showing a large number of patients with established CKD 4-5 having not made a decision for their dialysis modality. Data collection was obtained on all activity relating to the pre dialysis service. A business plan was then drawn up predicting future needs and growth, the NSF documentation was used to guide the implementation of a larger team.
Cost savings were initially related to timely access, closer monitoring of patients to enable timely starts to dialysis. Audit has continued and provides ongoing information of activity and highlights areas required for further development. Rather than a project this was a service redesign and reconfiguration and costs incurred were allocated from an existing budget.
A planned, structured, unbiased, supportive and consistent approach to patient education and information is provided at MRI by carrying out the following methods.
How did you implement the project
All patients who attend the pre-dialysis service have an initial '1:1' assessment with a pre-dialysis nurse which reviews the patient's educational needs/ability.
A second assessment of educational needs takes place at the next appointment. Patients are invited to attend an education workshop. At the workshop patient, families and carers have the opportunity to interact with dialysis equipment, and view mannequins with dialysis access in place. Additional resources are also made available to meet the learning styles/needs of all. Initial visits include an assessment of the patient's acceptance that future dialysis is likely to be necessary.
A major strength is that the workshop is portable and can be taken into ward areas to deliver education to patients whom through late referral have not received pre-emptive education.
Patients are encouraged to participate in management of their condition with the use of 'patient held notes', 'Expert Patient' programmes to support disease management.
All patients their families and carers are invited to an evening education event which enables them to meet the MDT, experienced kidney patients and learn about CKD, treatments/support available.
The pre-dialysis team refer patients to the community renal team for home assessment at the right time. This assessment forms the basis of a second opinion minimising bias and confirms patient decisions.
When patients opt for PD, they are introduced to the PD clinic before Tenckhoff insertion, allowing the team to begin the support process and to form relationships.
Timing of access and the referral pathway is enabled by closely working with the surgical and secretarial teams. Having accurate/up to date knowledge of patient's condition/progression aids prioritisation of access. This is particularly beneficial for acutely presenting patients and those with rapidly declining function.
The process described above can provide a 'fast track' education approach for patients requiring an acute start to dialysis, by visiting them on the in-patient ward or arranging additional visits to the workshop in between clinic visits. A flexible and multi-skilled pre-dialysis team is required to ensure a seamless journey through pre-dialysis on to the treatment of choice.
Initially data was collected on pre dialysis activity e.g total numbers attending clinics, telephone support provided by the team, decisions made and outcomes, dialysis access and timing, EGFR at time of referral and location of referral and inpatient/acute referrals and home visits. Collecting this data highlighted issues around late timing of referral in some cases, patient outcomes have been measured in relation to choices given and satisfaction of the service. Numbers opting for home therapies has steadily increased. The provision of a robust education programme has provided patients with choices around their dialysis treatment where appropriate. Monitoring progress since the establishment of the pre-dialysis service has been a fundamental aspect in obtaining support from managers.
A more recent review (2010) of patient flow demonstrates that 55% of patients had a planned start to dialysis. Of those 42% went onto PD for those unplanned starts only 8% went onto PD on home. This may show patients missed out on choice aspects. This has enabled the team to now concentrate on improving and possibly changing practice with unplanned starts.
Key learning points
Challenges in the care pathway of patients with CKD stages 4-5 can occur at any point along the disease trajectory. Obtaining robust base line data provides the foundations on which to demonstrate current service provision from which service developments and outcomes can be measured, in order to provide evidence for developing the service further. Collaborative working with senior management teams and clinical governance teams to highlight gaps in service provision and gain support is fundamental.
A clear vision about what services you can realistically deliver given the resources you have is important as is the vision for what a pre-dialysis service should incorporate. Education, support and monitoring are overarching concepts of a pre-dialysis service, but the service is diverse and consideration must be given to the various components that make up a pre-dialysis service, these include; dialysis access (referrals, monitoring), Audit, education (patients, families, staff, primary care, secondary care), pre-dialysis clinics, leadership. Clear transparent protocols, guidelines and policies should be embedded in the service which illustrates the quality of the services provided.
It is also important to continue to monitor and audit patient outcomes, satisfaction and success/failures on home therapies. The ongoing support required to sustain and maintain patients on a home therapy such as PD cannot be underestimated. There is certainly variation across the country on staffing levels, structure and varying ways of service delivery. One of the best measures is ensuring patients are supported and remain on a therapy that is clinically and individually suited. One of the strengths within MRI is community team support, dedicated in-house 7 days per week drop-in service, dedicated PD clinics, and dedicated PD consultant. The NICE guidance (NG 107) section 1.5 highlights the importance of not switching patients unless clinically indicated.