Informed patient choice is a key principle governing the NHS (Say and Thomson, 2003), and it is particularly relevant for patients with a chronic disease that commits them to lifelong treatment. The demands of treatment are especially high for people with end-stage or established renal failure (ERF), who owe their survival to renal replacement therapy (RRT) (DH, 2004).
Nurses play a critical role in educating and monitoring patients on RRT, and this article explains how nurses at one UK renal unit built on this experience to promote treatment choice among dialysis patients.
About half of the UK's 30 000 or so ERF patients have a functioning kidney transplant, but others depend on regular dialysis to replace the function of their own kidneys (DH, 2004). There are two forms of dialysis: haemodialysis (HD) and peritoneal dialysis (PD). In HD an artificial kidney cleans the patient's blood, while PD uses the patient's own peritoneum as a dialysing membrane. HD is usually performed in hospital three times weekly, while PD is carried out at home by the patient either every night (automated peritoneal dialysis; APD) or three to four times daily (continuous ambulatory peritoneal dialysis; CAPD).
Standard 1 of this year's National Service Framework (NSF) for Renal Services endorses the principle of informed or educated patient choice, while Standard 4 states that dialysis should be designed around individuals' needs and preferences (see Policy box) (DH, 2004). Turning these standards into clinical reality involves considerable changes in practice, since almost 70% of patients receive their RRT in hospital in the form of HD. Of those treated at home, 21% use CAPD, 9% APD, and 3% home HD (Peters, 2003).
There is no robust evidence that one form of dialysis is superior in terms of outcome (DH, 2004), though a patient's medical history and personal circumstances may limit the options. For example, HD requires vascular access and so the patient's blood vessels must be in good condition. However, such patient-related factors do not in themselves explain why treatment provision varies across regions and renal units (Peters, 2003), and it is clear that other issues prevent renal units from offering patients a real choice between dialysis treatments.
When given a choice, over 70% of dialysis patients - including older people (Ahmed et al, 1999) - opt for home-based treatment (Prichard, 1996). The National Institute for Clinical Excellence (NICE) has recommended that all suitable patients should be offered the possibility of home HD (NICE, 2002), but the guidance makes it clear that only a minority of patients are likely to be suitable for this form of home therapy.
In general, patients need not only the ability and motivation to learn to carry out home HD, but also the commitment to maintain treatment. They must:
- Be stable on dialysis
- Have good functioning vascular access
- Be free of complications and significant co-morbid disease.
The patient's home must also have suitable space for the machinery and supplies necessary for each dialysis and, since most patients cannot manage the treatment alone, a carer must have made an informed choice to help with home HD (NICE, 2002).
These criteria are likely to exclude many of the largely elderly dialysis patient population, as well as anyone who lives alone or does not have suitable accommodation. For these patients, PD is a more realistic option, since it meets the demand for home treatment while expanding renal services with minimal capital investment.
There are also potential staffing benefits for renal units since the nurse-to-PD-patient ratio is lower than that required for hospital HD.
The renal unit at Wrexham Maelor Hospital is part of the North East Wales NHS Trust and serves a population of 280 000 in a largely deprived urban and rural area. In 1996, 80% of patients received hospital HD and, like many other renal units (Peters, 2003), Wrexham Maelor was struggling to meet demand for its services. Not only was the hospital HD unit operating at full capacity, but patients living in rural areas were travelling long distances for their treatment.
Home treatment was an obvious solution, but at that time the only option was CAPD, which was unpopular among patients, while medical and nursing staff found it difficult to achieve national standards for dialysis adequacy (Renal Association, 2002) using this form of treatment. The unit offered APD only as a second-line option to patients already on CAPD, especially if they were experiencing problems such as raised intra-abdominal pressure causing backache (as APD is performed at night while the patient is lying down, intra-abdominal pressure is lower and greater volumes of fluid can be used without adverse effects).
In 1996 the pressures on capacity, the wish to extend patient choice, and positive experience with APD in some patients resulted in a change of attitude, and the renal unit decided to offer APD as a first-line choice to all dialysis patients. APD is an attractive option, as it frees patients' time during the day for work, school and social activities, and it may reduce the risk of peritonitis - the major risk to well-being in PD patients (DH, 2004).
APD is initially more expensive than CAPD (DH, 2004) and the perceived higher cost of APD is a barrier to its wider use. As a result, Wrexham Maelor was able to offer APD as a first-line choice to all dialysis patients only following demonstration of its cost effectiveness using RENPLAN, a computer model developed within the renal unit (Rutherford and Forte, 2003).
RENPLAN was designed to support strategic planning of renal dialysis services by adapting an existing, 'whole systems' balance-of-care approach. At Wrexham Maelor, the model revealed that offering the choice of HD, CAPD or APD to all new and existing patients was the most cost-effective of three possible scenarios designed to enable the unit to achieve Renal Association standards for dialysis adequacy (See Table, p 24).
CHOICE IN PRACTICE
In 1996, all existing HD and CAPD patients were given the option of a transfer to APD. Fourteen of 16 CAPD patients transferred, as did 26 of 72 HD patients. Since then, all patients entering the Wrexham Maelor dialysis programme have been offered a choice of HD, CAPD and APD. In 2003, about 38% of patients chose PD and 62% HD, compared with 20% and 80% opting for CAPD and HD respectively in 1996 (see Figure 1). Furthermore, 60% of patients who chose APD were still using the technique four years later. (These data are from an ongoing study led by Dr P. Drew, not yet published).
To make an informed choice patients need to be educated on all dialysis modalities and other aspects of treatment (see Table above). A renal physician sees patients who are likely to need RRT within the next 12-24 months. If they are suitable for all treatment options, they are offered referral for a programme of education by other members of the multidisciplinary team, which includes PD, HD and transplant nurses, as well as the anaemia co-ordinator and a social worker. Treatment is tailored to each patient to take into account cultural and linguistic needs as well as factors such as age and possible disabilities.
Nurses train patients to perform their treatment at home, covering aspects such as:
- How to operate their APD machine
- How to monitor their health
- How to care for their peritoneal catheter to prevent infection
- How to detect peritonitis.
Training takes place in the renal unit or in the patient's own home, and is very intensive, taking three to five days for two to four hours a day. The process is, however, very rewarding, as it is carried out on a one-to-basis and, where possible, by the same nurse in order to maintain continuity of care and prevent gaps in education. While medical staff regularly follow up all ERF patients in the renal outpatients clinic, nurses take responsibility for monitoring home dialysis patients with regular four-monthly visits and weekly telephone calls once the patient is established on treatment.
BENEFITS OF CHOICE
Offering APD as a first-line choice has significantly improved patient compliance and motivation. The unit now easily meets standards on dialysis adequacy, which in future should help to reduce patients' risk of long-term complications such as hyperparathyroidism and bone disease. Treatment failure rates have also improved from one in 38 in 1996 to one episode in 161 patient months in 2003, while the need for temporary hospital HD has also fallen from one in 44 in 1996 to one episode in 107 patient months in 2003.
The NSF reports that education improves renal patients' social and psychological functioning (DH, 2004), and we have found that extending patient choice to include APD has promoted the well-being of many of our patients. They no longer travel long distances for treatment. Older people may have retired but are maintaining an active life, and younger patients have maintained full-time employment.
Offering patients a choice of therapy does increase demands on staff in the initial stages when new systems of care are put in place. However, improved patient outcomes have been reflected in greater job satisfaction.
In endorsing the concept of patient choice, the NSF for renal services reflects successful co-operation between renal staff and patients that aims to improve services at national level (Kidney Alliance, 2001). Promoting individual patient choice through shared decision-making is challenging, but experience at Wrexham Maelor demonstrates that this approach can produce similarly rewarding results for both patients and renal unit staff.
National Service Framework for Renal Services: to be delivered by 2014
- STANDARD 1. PATIENT-CENTRED CARE
All children, young people and adults with chronic kidney disease are to have access to information that enables them, with their carers, to make informed decisions and encourages partnership in decision making, with an agreed care plan that supports them in managing their condition to achieve the best possible quality of life
- STANDARD 2. PREPARATION AND CHOICE
All children, young people and adults approaching established renal failure are to receive timely preparation for renal replacement therapy so that the complications and progression of their disease is minimised and their choice of clinically appropriate treatment options is maximised
- STANDARD 3. ELECTIVE DIALYSIS-ACCESS SURGERY
All children, young people and adults with established renal failure are to have timely and appropriate surgery for permanent vascular or peritoneal dialysis access, which is monitored and maintained to achieve its maximum longevity
- STANDARD 4. DIALYSIS
Renal services are to ensure the delivery of high-quality clinically appropriate forms of dialysis which are designed around individual needs and preferences and available to patients of all ages throughout their lives
- STANDARD 5. TRANSPLANTATION
All children, young people and adults likely to benefit from a kidney transplant are to receive a high-quality service which supports them in managing their transplant and enables them to achieve the best possible quality of life.
Source: DH, 2004
Author's contact details
Liz Cropper, BSc, RGN, is Nurse Consultant, Chronic Kidney Disease, Ward 26, Nephrology Department, University Hospital of North Staffordshire, Princes Road, Hartshill, Stoke-on-Trent, Staffs ST4 7LN; email: firstname.lastname@example.org
The author would like to thank Baxter Healthcare Ltd for editorial assistance in the writing of this article
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