The Nursing Specialist Group

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1 The Nursing Specialist Group The INFOrmed Touch Series Volume 4 - Making the right connections: human and electronic networks Proceedings of the Annual Conference 19th - 20th Sept 1996 Edited by Denise Le Voir Prepared for the web by Rod Ward The development of an interactive patient nutrition education system for dialysis patients John Besignano RN Dialysis Administrative Co-ordinator East Orange General Hospital New Jersey, USA John Besignano is a graduate of Rutgers University, he has a Masters in Public Administration and he is presently completing his Masters in Biomedical Informatics in a joint programme of the University of Medicine and Dentistry of New Jersey and New Jersey Institute of Technology. He is a member of the Planning Committee at Rutgers for Nursing Computer Conferences. In the two days of the conference I learned quite a bit about what is going on in the UK. In a few ways the UK is behind the USA; and in many ways you are beyond us. I believe in five or ten years you are going to eclipse much of what we are doing in the United States. Our problem in the US is that we are somewhat fragmented: with competition among academics, business and clinical areas, a unified approach is difficult. Hopefully, it seems we are changing, uniting and standardising. Together with our lead dietitican, we reviewed a number of charts. We noted that we have a large number of dialysis patients, whom we believe are representative of the typical dialysis patient in the USA. We find that they spend 10 hours a week, or 546 hours a year, undergoing dialysis treatments: sitting in a chair hooked up to a dialysis machine. One slight problem, these patients are not using their time productively. They are watching soap operas and talk shows on TV, and doing anything but learning. This presents an dopportunity to educate what some might consider a 'captive' audience. Patient's views We did a patient survey todetermine which areas were of concern to the patients and we noted overall dissatisfaction with care as the primary area. Another area that was notable was the proportion of the survey dealing with availability of the dietician. Of the patients that responded, 22% said they were not satisfied. This was linked ot the 30% of respondents who were not satisfied with either the nursing staff or the dietician providing information concerning the sideeffects of the dialysis treatment. These results provided an impetus for improvement.

2 Workload The other impetus came from looking at the patient load/number of treatments each year from 1993 to We had a 15% increase in the number of patients each year. There had been no increase in staff since 1991, yet we had incrementally increased the work load. The trend is probably going to remain the same in the future. Staff face an increasing workload, and less time to actually spend with the patients other than on technical details. This does not reflect well on my institution or the nursing department. A single dietician, who originally started out with 80 patients, now has 134 patients. With the same person and the same number of hours per week: it became very difficult for her to do her job. Each increase in the number of patients means the potential for a multiple of problems. Possible topics Our dialysis patients come from an inner city area. They have conditions such as diabetes and hypertension (that were the causative effects of renal disease) complicating the dialysis treatment. Many have up to four other conditions or comorbidities concurrent with the renal disease, such as congestive cardiac failure to asthma. This adds a high degree of complexity which we did not have before. Such a mix of disorders will make patient education much more difficult. Education Our goal is to provide an interactive patient education system focusing on diet and nutritition. This is a result of questions we asked ourselves and our patients. Such questions as Is there a desire for education?" and "Is an interactive system superior to traditional methods?" Another question was "What type of patients do we have?" We felt they were noncompliant based upon laboratory evidence.laboratory studies can document the compliance with the dietary regimen and provide a base-line for compliance. It is one of the few areas where there is a direct cause and effect visible on a qualitative measure. Local demographics Our typical patient is female, African/American in the 45 to 64 age group, single (which does make a difference to compliance) and of a below high-school educational level. Hypertension is the primary cause of kidney disease, followed by diabetes mellitus. Within this ethnic group, hypertension is common (63% of patients). this provided a focus and a disease entity that could be addressed effectively with diet and education, along with the appropriate medications. A typical dialysis patient in the USA is male, Caucasian, in the 45 to 64 age group, married, and with a high school education level. The primary cause of for renal disease is diabetes mellitus, with hypertension as the secondary cause. The predominantly female gender of our patients is interesting due to the demographics of our catchment area, in which females live much longer than males. The average male in our population area will live to be about years. The

3 females will live to approximately years. The females will live to approximately years. The education level of the local population was also important. The data showed an average education of 10.9 years of schooling ( less than a high school education) compared to the nationwide average of 12 years of schooling. Educational outcomes Our basic rationale for the educational outcomes was to try to teach patients to follow a proper diet. A proper diet will greatly assist in the dialysis treatment. The results of a poor diet include complications, such as the need for increased dialysis system pressures, and increased failure of grafts due to those pressures. A poor diet can have a negative effect on the treatment plan. creens on visual display units. I think the main result was that they actually tell the truth to a VDU whereas they do not always do so to a doctor. Certainly, there was work on alcoholism where patients admitted they drank half as much again talking to a VDU than they would admit to a doctor. That is quite old research and am not actually aware of similar stuff going on now. John Besignano There is very little currently published research on youth, computers and patient education. There was one obscure research study, done in the late 1970's or early 1980's, where they decided to evaluate the patient's responses to a computerised patient history. It found that the patients were more realistic and truthful with the computer than they were with the clinician, whether a physician or a nurse. No one is sure why that is so. Critics also felt that the study subjects were an uppermiddle class group of people with a higher education level. They felt that may have skewed the survey results because the group did not really reflect the average person in the US. I understand there are a few studies presently underway and I look forward to their results. Participant: One study was done in Glasgow and another was done in Fulham, which is not what you might call upper-middle class. The one in Fulham was done at the general practice level. The one in Glasgow was done in a clinic in one of the hospitals. Question: You said that the soft-ware and everything you used to set up the system was bought off-the-shelf. What software have you chosen to actually develop? John Besignano: Well, we are looking at a combination of Visual Basic, and Goldworks (which is an artificial intelligence program). I am looking at three different interface engines right now. I have not found the one under the price tag I want. Also, we are looking to use Dbase as our data base system. One problem is that the last two versions of Dbase have some major bugs in them that do not work well with the artificial intelligence programs. In the USA we also have a problem with HL7, the computer language. We are all supposed to be on the 'same sheet of music'. It seems that different computer systems, even though they are on HL7, do not talk to each other. And no matter what interface engine you have in-between, they still do not talk to each other. Our AS400 system in the hospital, which holds the data for the Laboratory system, does not talk to anything else. So I cannot find anything off-the-shelf that it will talk to yet. I found something that would cost me about $10,000, that is about $9,900 more than I wanted to pay.

4 Heather Strachan, Session Chair: I think that is a very good example of networking with patients to actually improve the outcomes of care. John Besignano is now employed as Director of Case Management and Quality Improvement at Wayne General Hospital, in Wayne, New Jersey. Compliance factors The compliance factors include strong social support: from the family or significant others. Many of our single patients have no social support - no family, no significant other. There is no one with whom they can share their treatment constraints, and no one twho will provide support and understanding. Another compliance factor is an understanding of dialysis treatment. some of our patients had little understanding of the process. They where not fully aware of the blood flow through the filter and what the filter accomplished. Motivation is yet another important compliance factor. You have to have people motivated to accept the treatment and the requirements that go with it. Again this means compliance in education and feedback. One problem in education, that I see is that there are no feedback mechanisms. How did the patient do in the return demonstration? Retention of knowledge was often in doubt, even under the best of circumstances. The system In a follow-up survey we asked "Would you want to use a computer to learn about your disease?" Sixty-one percent said "yes". This was a very positive response that indicated we may be on the right track. Our goal for the main system was to use nothing fancy: to use off-the-shelf equipment not to spend money on building things. We have been looking at buying the soft-ware and hard-ware at discount stores. The idea is that once we have finished this programme, we want to give it away free. We often have limited resosurces to purchase equipment, or supplies or soft-ware. If I can give it to people free, perhaps we can encourage its use and remove a few of the obstacles that would prevent the system form reaching those for which it was intended. We believe that the patient is going to use the system in two places: either undergoing dialysis treatment or in the waiting room. The individual set-up could provide a choice of three input methods: touch screen, keyboard and mouse. Based on the age of our patients, and a probable very short exposure to technology, we believe that the touch screen might be the best method. However touch screens require very precise programming, are expensive, and also have a very short life-span. There is a problem in using a mouse as, depending on the screen format and where the mouse is placed, you cannot be too precise with the cursor. A keyboard is good, but typing may be difficult for some of our patients.thus we are trying to use a combination of mouse and keyboard.

5 Planned set-up The plan is for the patient to log in and be greeted, both verbally and on the screen, questioned about their recent health and lab studies and asked for some information. Following a review of the previous lessons and a few questions, a pre-test to determine their current level of functioning will be given. This feedback loop is needed to obtain the patient's responses and compare them with the norm and the base line. This determines the potential comprehension levels. We evaluate this in terms of what kind of lesson the patient going to receive and the ability needed to 'get the most out of it'. Putting it very crudely, if the patient is having a bad day then he gets a water-down lesson. If he has a good day then he has a more involved lesson. We would like to provide five different levels. The idea is that not everyone is going to be on the same level every day. Once we determine the potential for learning, we will modify the lesson as needed. Soon, this lesson will be tailored for each patient at that moment in time. Conclusion Everything we do here is going to pertain to the patient and some day, God forbid, you will be a patient. Hopefully, people like ourselves will have done our homework and done our job right and to make your time as a patient more realistic, human, kinder and gentler. This is what we are looking for. If we work together, we can change the present situation. Questions and discussion Question: There was research done in the UK in the 1980's on patients' responses to these