 |
 |
 |
2006/1 EDTNA/ERCA Journal Club Discussion SummaryInfluence of a Pre-Dialysis Education Programme (PDEP) on the Mode of Renal Replacement Therapy' by Tony Goovaerts, Michel Jadoul and Eric Griffin Compiled by Elizabeth J Lindley1 based on contributions from Nicki Thomas2, Linda Hanna3, Diane Walker2, Elisheva Milo4, Thomy Koupatsiari5, Jean-Yves De Vos6, John Sedgewick2, Karen Pugh-Clarke2, Frankie O’Kane3, Gillian Treloar7, Marisa Pegoraro8, Anna Marti9, Riitta Muroma-Karttunen10, Gareth Murcutt2, Stanley Shaldon11, Nic Hoenich2, Don Brooks2, Ken Pilley2, Waltraud Küntzle12 and Tony Goovaerts6. 1Department of Renal Medicine, Leeds Teaching Hospitals NHS Trust, UK; 2UK; 3Northern Ireland, 4Israel ; 5Greece ; 6Belgium; 7New Zealand; 8Italy ; 9Spain ; 10Finland; 11Monaco; 12Germany. Abstract The discussion was initiated by a paper on the influence of a pre-dialysis education programme on the mode of renal replacement therapy by Goovaerts et al (NDT 2005). Barriers to the uptake of self-care treatment modalities, including late referral, limited availability of treatment options, reimbursement, support from staff and families, the requirement for a helper and the length of the training programmes for home haemodialysis (HD) were discussed by 21 participants from 12 countries. The ‘take-home’ messages from the discussion were that to optimise the uptake of self-care modalities, renal units should try to ensure the all patients who are able to choose are fully informed before starting dialysis, even if they are referred to the unit very late. Offering a wide range of treatment options to new patients, and allowing (or encouraging) home HD without a helper, may also increase the number of patients who start and stay on a self-care modality. It should be possible to provide an acceptable level of training, without compromising on safety, within 3 weeks if the patient is confident with needling. Discussion paper and update on the St Luc programme The publication selected for discussion by the EDTNA/ERCA Journal Club in April 2006 was “Influence of a Pre-Dialysis Education Programme (PDEP) on the mode of renal replacement therapy” [1]. The authors work in the University Hospital St Luc in Brussels, and the corresponding author, Tony Goovaerts kindly agreed to take part in the discussion and respond to any queries raised. Tony's group analysed the 242 patients who started dialysis at their centre between December 1994 and March 2000. Of these, 57 patients were directed to in-centre HD for medical or psycho-social reasons. The remaining 185 patients went through the St Luc PDEP. After excluding the 8 patients who had pre-emptive transplants, 102 (60%) chose a self-care option. Just over half (55) of the patients who opted for a self-care modality chose peritoneal dialysis (PD), 30 chose to have haemodialysis in a self-care satellite unit and 17 chose home HD. Whilst the authors could not compare their patients with a control group who received identical care but did not go through the PDEP, the high proportion of patients choosing self-care modalities seems to show that a providing a range of treatment options and good patient information can reduce the requirement for centre HD. The PDEP at St Luc is managed by the team of eight nurses who train and provide follow-up care for PD and self care HD patients. Currently there are 35 patients on PD, 25 on home HD and 24 in the satellite unit for self-care HD. Since the published study, 264 new patients have gone through the programme. Data on the final choice of treatment modality is not available for all patients, but Tony was able to analyse the choice (if any) made by the patients on completing the PDED. 26% chose PD, 17% home HD, 4% self-care centre HD and 17% conventional centre HD. 4% had not responded and 31% said they were still undecided. Last year St Luc produced a new interactive DVD, the 4th film they have made since starting the PDEP. If, for example, a patient is medically unsuitable for PD, they can programme the DVD not to show the PD part. The new DVD includes daily and nocturnal home HD. It is too soon to look at the number of patients choosing these modalities, but there is already a trend for more patients to choose home HD, rather than self-care HD in a satellite unit. This may be because at home, patients can choose to dialyse more frequently, but in the satellite unit only three times weekly HD is available. Early and late referral Nicki Thomas from the UK was part of a team that recently completed an audit into pre-dialysis care. They looked at 750 pts who started dialysis in a six month period in 13 renal units in south-east England. They found, as other studies have, that the longer patients were in the care of a renal unit before starting dialysis, the more likely they were to chose PD. Overall, 25% of these UK patients chose PD while 75% started in-centre or satellite haemodialysis. Most of the units did not offer home HD at the time, but some were encouraging self-care in their satellite units. One recommendation from Nicki’s audit is that patients who are referred late (less than 3 months before starting dialysis) should be offered group pre-dialysis education and a review of their treatment modality within 6 months of starting dialysis. Linda Hanna from Northern Ireland described a recent study in her region that looked at 140 new dialysis patients. Only 35 (25%) had a planned start and of these 49% started on PD. The other 105 patients were mainly late referrals and although most received pre-dialysis education, only 7 (7%) started on PD. Tony agreed that most studies do find that patients referred early tend to choose self-care treatment modalities more frequently, but said they did not observe this in the study. “In fact 61% of our late referrals opted for a self-care modality”, he said. “This may be because we ‘promote’ self-care in general, and the patient is able to see and hear the advantages of self-care in our film in which real patients describe their experience.” There were 5 patients in the study who received the pre-dialysis information only after having started dialysis. “If there are no medical or psycho-social contra-indications for self-care, the patients go through the programme as soon as they are well enough to be informed.” However, these patients all chose to stay on in-centre HD. The general experience is that patients who have an unplanned start to dialysis almost always start on in-centre HD and very rarely convert to self-care modalities. This could be partly due to lack of education and the lack of a formal modality review, but not wanting more change probably contributes. In addition to patients who are referred late to the renal unit, there can be late referral for pre-dialysis education. Diane Walker from the UK now works in both Home HD training and in the provision of pre-dialysis care for patients from a satellite hospital. “Before I took on the role many of these patients would ‘crash land’ onto haemodialysis in the main unit with a temporary catheter. I now have 3 consultants trying to refer patients for education as soon as possible.” Diane’s experience illustrates the importance of the availability of a pre-dialysis education programme (or at least a person!). An e-mail survey of 23 EDTNA/ERCA volunteers in 12 countries showed that, while all units offered some patients a choice of treatments, the proportion of patients given the opportunity to make a choice varied rather widely (see figure 1). 74% of units had staff with time dedicated to pre-dialysis education, although the staff did not always have enough time to see all patients.
Only 52% of units were able to provide unbiased videos or DVD’s to allow patients to learn about treatment modalities at their own pace. Five units (22%) had neither staff with time to provide education nor video/DVDs. Resources for self-care modalities One of the striking features of Tony’s PDEP is that patients are offered a very wide range of treatment modalities from the start of dialysis. This is not possible for all units. In the survey described above, CAPD was offered to new patients in 91% of units, but only 70% offered overnight automated PD to new patients. 12 (52%) units had a home HD programme, but only 8 of these units offer home HD to new dialysis patients. Elisheva Milo explained that home HD is not available in Israel, possibly because of bureaucratic problems between the hospitals and health insurance companies. Thomy Koupatsiari felt that, in Greece, very few units would offer home HD. Jean-Yves De Vos pointed out that in Belgium, PD is sometimes seen to be badly reimbursed. In the UK, it is well documented that home HD is less costly than in-centre HD, and there are national guidelines stating that it should be offered to all suitable patients. However, as John Sedgewick pointed out, there has been no financial support to help renal units establish or expand their home HD services. “This has led to some new patients in my area feeling quite let down when the treatment they would prefer cannot be provided in reality.” Karen Pugh-Clarke, also from the UK, agreed that until financial support specifically for home HD was made available, providing this option would continue to be a challenge. Self-care HD in a centre or satellite should be easier to support but Frankie O’Kane from Northern Ireland has experience of problems when setting up a self care area in a busy main unit. “Our unit had 40 stations and we added 3 more about 2 years ago. These 3 extra stations were to allow both self care and home dialysis training. Unfortunately as the HD population increased, these extra stations were taken over by new patients and self care never really got off the ground.” Gillian Treloar, who now lives in New Zealand, described a service where funding for home HD has never been an issue. “I came here from a large dialysis centre in the UK and was amazed to find that 50% of the patients dialyse in their own homes, most with only a partner for support. We have two patients that have helpers, one patient has diabetic retinopathy and the other is unable to cope with the machine but needles himself. Our philosophy is to encourage patients to dialyse in their own homes, where possible, and this is supported by the management of the hospital. I feel we offer a flexible and patient driven service.” The rapidly growing dialysis population means that although Gillian’s unit has a dedicated home training room, to cope with demand patients are trained anywhere within the 10 station unit and all the staff are involved. This sounds less than ideal, but it has led to staff job satisfaction and, as an unexpected spin off, to some patients who will never go home starting to participate in the preparation of their machine and tray or even filling in their dialysis information. The ability of Gillian’s unit to provide helpers obviously allows more patients to dialyse at home. Tony’s unit offers this service to APD patients. Community nurses visit once a day to dismantle the cycler and set it up for the next treatment, dress the exit site and check the patient’s blood pressure and weight. The nurses are trained in the patient’s home during a 2 hour session. Other factors affecting the promotion of a self-care culture Marisa Pegoraro from Italy felt that self-care should be promoted. “In my years of working in a limited care satellite HD unit,” she said, “I saw the positive effect that experience and knowledge has on the human being. The ‘mystique’ surrounding dialysis can also be a way to control, by keeping the power of medical knowledge away from the patients. This could be a reason for not really investing in self care, along with other well-known excuses like the requirement for medical care and the patients need a feeling of security.” Anna Marti from Spain said that the number of home HD patients in Spain has never been high. “It declined some years ago due to various reasons including lack of support, gender issues (it was very difficult to put a female patient on home HD), home size and good transplantation expectations.” But she went on to say that the use of this option may be increasing now, with the introduction of new machines, and better support from administration. From the survey of EDTNA/ERCA volunteers, the two most common barriers (see figure 2) to self-care were an unsuitable home situation (70% of units) and lack of support for home care from families (52% of units). This suggests that self care HD units with flexible dialysis times should be more widely available. Currently, only 39% of units offer self-care in a special unit or room. Language problems were felt to be a barrier in 48% of units. In 35%, lack of support for self-care from doctors was felt to be a problem and these units were more likely to have inadequate staffing for training and monitoring patients on self-care modalities.
The ‘no dialysis’ option Jean-Yves De Vos brought up the difficult issue of offering ‘no dialysis at all’ with, of course, an in-depth explanation, as a choice. Dialysis may not be the best option of some patients such as (but not exclusively) the very elderly or those with multiple organ failure and other co-morbidities. He wondered if staff are not open to this option because we are educated to help cure people, or if this is not possible, to keep them alive – at almost any cost. Elisheva Milo agreed that this option is not usually offered to patients even in cases where the staff know that dialysis will only prolong a patient’s suffering. It is a decision made by the doctors who, because of the laws and regulations, practice ‘defensive medicine’. “Occasionally we have offered the ‘no dialysis’ option to families when the patients were not able to decide for themselves, but in 25 years none of the families decided against dialysis.” Nicki Thomas had a different picture from the UK where, she said, the option of ‘conservative management’ is increasingly offered. In 2005, a seminar on the ‘National Service Framework’ (government guidelines) for renal services included a session on ‘end-of-life care’ [2]. In a survey of 16 renal units presented by Dr Joanna Chambers, consultants at 12 said they do discuss the option of not starting dialysis (at least with some patients). It is important to point out that ‘no dialysis’ is not ‘no treatment’, but the option for palliative care and support. A relationship between the renal unit and palliative care services is important. Gillian Treloar’s unit in New Zealand works with the palliative care team to care for those patients who do not want dialysis. Linda Hanna’s unit in Northern Ireland is establishing a system of timely and appropriate referral to palliative care services in the community for patients who choose not to start dialysis. Her Trust recently introduced the ‘Liverpool Care Pathway for the Dying Patient’ [3] for the management of terminal patients in the hospital. Since the Journal Club discussion, the EDTNA Journal has published a series of articles on end-of-life care [4]. Home HD – should patients always have a helper? One limitation to the take up of home HD is the lack of a partner or carer. Linda’s unit in Northern Ireland has a policy stating that support, while undergoing treatment, is essential. Anna Marti said that, as far as she knew, in Spain patients are not accepted for HD if they have no partner or carer. Diane Walker said that her unit in the UK does accept patients without helpers. “A multidisciplinary team decides if this is safe on an individual basis and we ask each patient to sign a contract in which they agree to follow our guidelines. If not, we can reclaim the machine and the patient will come back to hospital dialysis.” Tony and Riitta Muroma-Karttunen from Finland turned the need for a helper around completely. Tony explained that for several years, his unit has been trying to train patients to dialyse alone because in the past, partners often felt too great a responsibility and this led to stress situations. “Also”, he said, “our society has changed, relations are less stable and dialysis machines are much safer - these are reasons why we decided to let patients dialyse alone at home and now 80% train without an assistant. They probably concentrate harder during training knowing they can’t count on someone else. They have a checklist of the things they should have before they connect themselves (phone , drinks, medication, reading material, clamps, syringes etc) In case of problems, they phone the nursing staff. We provide a small poster on which all major parts of the user interface of the machine, dialyser and bloodlines have numbers to help with communication.” This philosophy has been adopted by Riitta’s unit too. They have educated about 140 patients to undertake home HD in the last 8 years. Initially, patients who would be without a helper were not accepted, but then one patient insisted on trying home HD alone and was accepted and now almost all patients go home without an assistant. “We currently have 44 patients at home,” Riitta explained, “and only 5 patients have an assistant. We actually have fewer problems, because often it was the helpers who were tired of home treatment. Our patients are pleased, they are independent, they can do their treatment when they want as they don't need to wait for a helper to come home. Now only very old patients have assistants.” Tony also pointed out that a helper is not guaranteed to be there during a problem. “What if the patient has a blood pressure drop while the partner is in the toilet? They will have to stop the UF and administer saline on their own then. Even if the patient is asleep, they will wake up if their blood pressure goes down!” Gareth Murcutt from the UK agreed and wondered if the requirement for a carer has been used more as a means to pass on responsibility if something goes wrong, rather than to protect the patient. Even where units insist on patients having a helper, they know that, once established on HD at home, the patient may dialyse alone. Of course dialysing independently on HD at home is not new in the UK. Stanley Shaldon (now from Monaco) pointed out that his unit achieved this in 1970 [5]. Tony’s unit limits the ultrafiltration rate to 900 ml/hr to reduce the incidence of hypotensive episodes. Nic Hoenich from the UK noted that the occurrence of these episodes could potentially be reduced by the use of profiling or temperature control, though neither of these totally eliminates the problem, so a patient dialysing alone at home would remain vulnerable. Don Brooks (Clinical Nurse and Business Development Manager for Aksys Healthcare) from the UK pointed out that the Aksys PHD (Personal HD system) was designed to make handling intradialytic hypotension very easy. The patient only needs to push a button to give themselves a predetermined dose of ‘rescue fluid’ without having to sort out saline bags or clamps. Accelerated home HD training programmes A large part of the discussion covered optimisation of training programmes for new home HD patients. Ken Pilley from the UK remembered the ‘old system’ where virtually all patients were trained to dialyse at home. Training commenced one the patient was established on dialysis and had accepted the situation. “It was interlinked with the treatment and the patient was soon cannulating themselves and operating the equipment. Once the patient was competent in the basic treatment, ancillary issues could be addressed. During this period, which I think was approximately 3 months, the patient was increasing in confidence and taking ownership of their treatment.” Waltraud Küntzle from Germany also remembered the old programmes. “The content of the training was quite exhausting and the programme was very long, partly due to the need to learn about technical manipulations in case of problems. Many of these problems are less frequent today.” Tony agreed that in the past the patients had to know everything by heart at the end of the training, but that is no longer necessary. While they have to understand what they are doing, they can follow the clear instructions in the training material. “The only things they really have to know ‘by heart’ is how to handle a blood pressure drop, and to clamp wherever there is a leak. The complications we practice during the training are recirculation, rinse back through arterial needle, power failure and blood pressure drop. We don’t cover blood leaks as they happen so rarely with hollow fibre dialysers. If a blood leak does occur, the patient will be told over the phone to clamp the lines and to discard the complete blood circuit.” Tony explained that they had seen the 8 to 10 week training period for home HD, compared to 4 to 5 days for PD, as a major drawback. They developed an accelerated programme which allows most patients to train in 3 weeks. Although this is partly facilitated by the newer machines, patients at the Northwest Kidney Centre in Seattle were trained in 3 weeks even in the 1960’s! During training, the patients dialyse four times a week. “We realised that many patients have difficulties in concentrating during treatment, so we train the patients intensively in the morning. In the afternoon they are dialysed and receive a little more information, mainly concentrating on reinforcement of what they have already learned.” “We also have a new training tool,” continued Tony. “The manual, which has always been the core of our teaching programme, has been replaced by a computer based learning programme in ‘Flash format’. This allows us to teach the whole dialysis procedure in very small, clear steps that are easy for the learner to understand and practice. Each step is practiced over and over again until mastered completely before proceeding to the next. A print-out in flip chart format can be used afterwards by the patient at home.” In addition to the performance of dialysis, Tony’s home HD training programme covers taking and centrifuging blood samples, interpreting blood results, I V injection of drugs (EPO, iron), water treatment, ultrafiltration and diffusion, medical complications (e.g. fever, hyperkalaemia, hypokalaemia), record keeping and diet. “At the end of the training programme, a nurse goes to the home of the patient for the first dialysis”, Tony explained. “She doesn't stay for the whole session, just for about two hours. We go back after 1 month and then schedule 3 visits per year, unless a patient has a particular problem. Patients who intend to do night dialysis are requested to dialyse during the day or evening for the first week at home, and then to switch to night dialysis. We provide 24 hour ‘on call’ assistance so that in case of problems, patients can be easily guided over the phone.” Riitta Muroma-Karttunen was surprised that training could be completed so quickly. In her unit, patients start training from their first dialysis and are ready to go home after 4 to 5 weeks. The content of the training programme is very similar to the one Tony described. “According to my experience”, she said, “you can teach almost everything to a patient in 3 weeks, but sticking the needles so that he get along alone at home takes usually more time. Our goal is to teach only the things that patients need to know and to leave out unnecessary details.” Tony replied that when using the buttonhole needling technique, most of their patients feel confident puncturing themselves after 3 weeks [6,7]. Also the buttonhole technique gives very good ‘cosmetic’ results (see figure 3).  Figure 3. Well established buttonhole sites (Photo courtesy of Tony Goovaerts)
Riitta’s unit have used the buttonhole technique routinely for some years. “It does help them to learn when they see the place where to stick. It doesn't hurt so much, if you stick always in the same place. We do have good results in that our fistulas are not injured by it, but sometimes with diabetic patients, we still have to change the stick places quite often.” Don Brooks described the training programme for the Aksys PHD. The training regimen currently involves a one week ‘train the trainer’ course for the home nurse, followed by a two week training course for the patient, which the home nurse undertakes with assistance if needed. “The patient they may or may not require much training during the second week”, said Don, “and none of the 15 patients trained to use the system in the UK have needed more than two weeks to pick up the basics of the machine and to be comfortable in emergency situations. We have an Operator’s Manual but the touch screen gives the patient or carer all the information needed, so patients rarely need to refer to it.” Benefits and costs of dedicated equipment The Aksys PHD machine is the only machine available that is designed specifically for use by home HD patients on short daily sessions. The 15-hour ‘re-cycle’ (disinfection, integrity tests and preparation) procedure between sessions, and the fact that the lines and dialyser are disinfected in-situ so that the patient uses the same consumables for about a month, means that the machine cannot be used in-centre. Other companies have adapted in-centre machines to make them home HD-friendly, mainly by making the user-interface of the machine more accessible to the patient. The specialisation of the Aksys was seen as both positive and negative. Don Brooks pointed out the ease with which patients can administer a fluid bolus and the very short patient training programme. Multiple use of the lines and dialyser reduces the time to get on and off dialysis, but also has advantages in terms of storage requirements (deliveries) and environmental consequences. However, there is a disadvantage in specialisation. As Tony pointed out, the absolutely ideal machine for home HD would allow patients on short daily dialysis to try nocturnal HD or standard 4 hour dialysis every other day for professional or personal reasons. Aksys are looking at the use of longer treatments but for now they would normally expect patients to dialyse for no longer than the 170 minutes per session for which the PHD system was approved by the FDA. For nocturnal sessions the lack of an integrated heparin pump would also be a problem – the PHD is normally used with a bolus of low molecular weight heparin. There is still R&D work for the manufacturers for home HD, which might get done if we can make it worthwhile by recruiting as many patients to home HD as Tony! As he said in the concluding comments, home HD is overdue for a real revival because it could be an optimal treatment modality for many more patients. Conclusions An unplanned start to dialysis is the greatest barrier to the uptake of self-care therapies. Patients known to the renal unit for less than three months before starting dialysis may be more likely to choose a self-care modality if staff can ensure that they are fully informed, despite the short period available for pre-dialysis education. An interactive DVD developed in-house may help these patients to take in enough information to choose between the modalities offered. To increase the number of patients opting for self-care, a wide range of treatment modalities (including CAPD, APD and standard, short daily and nocturnal home HD) should be offered to new patients. Renal units that are currently restricting home HD to patients with a partner or carer who is present at each session, should look at the benefits of training patients to dialyse without assistance. In units that prefer patients to be independent, the patients enjoy the lack of restriction on when they dialyse and their partners do not get tired of home care. A long home HD training programme could deter patients from starting home HD, as well as limiting expansion of the service. With modern equipment, it should be possible to provide an acceptable level of training, without compromising on safety, within 3 weeks. Insecurity with needling can mean that patients are not ready to go home for up to 5 weeks. The use of buttonhole needling and more frequent sessions during training may help reduce the time. Take-home messages To optimise the uptake of self-care treatment modalities, renal units should try to ensure the all patients who are able to choose are fully informed before starting dialysis, even if they are referred to the unit very late. Offering a wide range of treatment modalities to new patients may also increase the number opting for self-care. Allowing, or encouraging, home HD patients to dialyse without a helper may both enable more patients to benefit from home HD and reduce the number who return to the centre due to problems with the helper. With modern equipment, it should be possible to provide an acceptable level of training, without compromising on safety, within 3 weeks if the patient is confident with needling. Acknowledgements We are very grateful to Prof Norbert Lameire, Editor-in-Chief of Nephrology, Dialysis and Transplantation, for giving EDTNA/ERCA permission to circulate the paper freely and to Tony Goovaerts for answering our questions and sharing his vision. We would also like to thank Marta Valle Lagares who helped set up the new mailing system and Nico De Backer, EDTNA’s Web Solutions Specialist , for on-going technical support. And finally, thanks to the EDTNA-ERCA volunteers, and others, who responded to the survey and all the JC members who shared their thoughts and ideas on pre-dialysis education and patient choice. References
|
 |
 |
 |
 |
 |
 |
 |
 |
EDTNA/ERCA Secretariat - In der Ey 22, CH 8047 Zürich, Switzerland - Tel + 41 (0)43 336 29 50 - Fax + 41 (0)43 336 29 51 - Email: info@edtnaerca.org
EDTNA/ERCA, Pilatusstrasse 35, CH-6003 Lucerne, Switzerland