Overcoming early learning barriers in hemodialysis patients: the use of screening and educational reinforcement to improve treatment outcomes1
Article Outline
- Abstract
- Stephanie Johnstone, LCSW
- Lynne LeSage Walrath, MSW, MPH—area administrator
- Vivian Wohlwend, MSW—social worker
- LaDaska D. Jobe, RN—charge nurse
- Craig Thompson—dialysis patient
- Appendix A.
- Appendix B.
- References
- Copyright
Abstract
A dialysis team project to improve patient knowledge resulted in a significant improvement in patient understanding of health-risk behavior related to blood pressure and albumin management in a large hemodialysis clinic. This project demonstrates that brief intervention combined with a well-coordinated renal team can successfully steer the team’s time and resources toward improving treatment outcomes, despite the busy feel of the day-to-day dialysis clinic. Analysis of the barriers to successfully educating the ESRD patient is performed and the full intervention is described. The nephrology social worker, the RN and an area manager of 5 outpatient dialysis clinics speak of their experience with the project. A participant (ESRD patient) describes his sense of satisfaction with care.
Keywords: End-stage renal disease, dialysis, patient education, interdisciplinary teamwork, nephrology social work
The dialysis health-care team continues to face the challenge of ensuring positive treatment outcomes while managing rapid patient growth. The well-educated dialysis patient will continue to be key in the control of cardiovascular disease, which is a major predictor of survival.1, 2 Team efforts to screen patients for adequate knowledge will be necessary to avoid “information fallout” in contemporary dialysis clinic settings, where staffing shortages and increasing patient acuity have changed the day-to-day rhythm of the renal team.
Stephanie Johnstone, LCSW
Despite the continuing efforts of the National Kidney Foundation, the Renal Physicians Association, and other organizations to promote the delivery of early preparation of patients for renal replacement therapy (RRT),3, 4, 5 a surprisingly large number of patients continue to arrive at the dialysis clinic for the first treatment with little or no information on the importance of adherence behavior and the risks of nonadherence. Patients that initially respond to their diagnosis with positive health behavior often say to the team “I do it because my doctor told me to” but appear to have little understanding of “what would happen” or “why things would happen” if they were not adherent. In the management of kidney disease, in which patient empowerment and “buy in” may impact outcomes such as adherence and rehabilitation,6, 7, 8 it becomes important to help patients establish a clearer understanding of their illness, as well as a commitment to their role in disease management. The earlier those connections are made, some studies show, the better the outcomes.9, 10 When patients achieve this type of mastery in chronic illness, they appear to be much better positioned to influence their own treatment outcomes in positive ways.
Many barriers exist with regard to effectively educating the patient who is new to dialysis therapy. Early referral to a nephrologist has been shown to improve outcomes and readiness for renal replacement therapy,11, 12 but still remains a recommendation in the national care of chronic kidney disease (CKD) patients.13, 14 Too often, patients are diagnosed with kidney disease in stage 5 of CKD, and dialysis must be quickly initiated when the patient is uremic, anemic, and unable to effectively comprehend medical explanation or education.15, 16 In addition, the more pressing tasks of access placement, securing adequate funding for dialysis treatment, preparing the patient and family for sudden life transition, and reducing patient anxiety can take precedence over education in the hospital setting. Although the patients in this situation are told what to do, little, if any, time is taken to educate these patients on the risks of nonadherent behavior (what not to do and its impact on survival outcomes).
Even when patients are afforded a period of time to prepare for the initiation of treatment, they often find it emotionally difficult to do so.17 Many patients report that they had told themselves in the 6 months before beginning dialysis that they would go on with their life as much as possible and “not think about it until they had to.” Perhaps this attitude partially explains the low rates of patient attendance in treatment-options classes across the nation. The fears and emotional states of the patients that do attend these classes are evidence of this difficulty. Watnick found that 67% of patients can be diagnosed with at least a borderline degree of depression as dialysis is initiated.18
Those patients who do seek further information about beginning renal replacement therapy (RRT) sometimes find it difficult to locate an educational environment. Despite outcomes demonstrated by formal preparation for RRT, early education is not universally and consistently offered by dialysis providers. These programs take time and additional clinic staff, as well as coordination with local nephrology groups, all of which are increasingly challenging to secure. Indeed, success of the FMC-NA KIDNEY OPTIONS class has come after much effort was driven toward it. Although this type of programming is possible, it many times remains on the long “to-do someday” list of busy dialysis clinic managers who are more focused on problems and urgencies that relate to patients under their care. Even when programming is done, it offers little time to focus on the risks of nonadherent behavior.
In addition to educating patients before RRT, educating patients continues to remain a challenge after dialysis is initiated. As patients arrive at the dialysis clinic with a map and schedule in hand, new cognitive and emotional tasks are immediately presented to them. Adjusting to the outpatient treatment environment, stabilizing access function, securing transportation, and adequate insurance become primary areas of focus for many new patients. Often, in-center educational efforts compete for the limited cognitive and emotional energy patients have available to them for the first several weeks or months of treatment. The danger then lies in the tendency for the renal team to assume the patient, at 3 to 6 months, is already educated. There is no process to ensure that knowledge has been adequately absorbed, and patients do not know enough to ask for further education. It is little wonder that many patients on dialysis demonstrate knowledge deficits when questioned about more complex information such as the risks ssociated with nonadherence and the relationship of this behavior to high blood pressure, low albumin, and survival.
The dialysis team at Fresenius Medical Care-North America La Mesa (San Diego area) sought to ensure adequate comprehension and knowledge in patients within 3 to 6 months of initiating dialysis. After an informal review of short-term care plans, these patients appeared to show a higher rate of nonadherent behavior, which included missed treatments, shortened treatments, and excess fluid gains. Using the Continuous Quality Improvement process, the team suspected that knowledge deficit was a contributing factor to this problem. The social worker agreed to lead a project to improve comprehension of health risks associated with nonadherent behavior. The team agreed the focus of the intervention would be on behaviors associated with blood pressure and albumin management.
Patient recruitment method
A screening instrument was developed to identify patients with low comprehension of these risks (Appendix A). The items chosen by the social workers for this screening tool focused on 5 key predictors of wellness and survival in the hemodialysis patient.19, 20 Four of the 5 items were designed to assess comprehension of behaviors affecting blood pressure. The final item focused on albumin, also an important predictor of survival.21 Each of the 5 questions directed the patient to explain whatever they understood what might happen if they engaged in a specific nonadherent behavior. The dietician, charge nurse, and medical director reviewed the screening questions.
The open-ended design of the instrument, which would be used in an interview format, was developed by the social worker, who was concerned about the impact of “test-anxiety” in patients who might feel embarrassed to disclose to the team what they do not know. The Spanish-speaking members of the team were utilized to screen patients in Spanish as needed, thereby improving our efforts to learn from a more diverse sample of patients. For those patients identified to have a “knowledge deficit” (defined as lacking enough knowledge to make an informed choice between adherent and nonadherent behavior) the social worker and charge nurse were chosen to provide additional brief educational reinforcement in the area(s) where knowledge was lacking. The educational material developed to provide this reinforcement to these participants was simple and patient friendly, allowing the teaching team to tailor the intervention more closely to the individual patient’s needs. A 1-page, large-print handout was designed on each of the 5 adherence behaviors in focus. This type of intervention design allowed the team interventions to be brief and, according to the literature, more effective.22, 23 A follow-up instrument was designed to be deployed by the social worker within 1 week of the educational reinforcement (Appendix B). Measurements before and after the intervention were recorded.
Patients selected for the project represented a culturally diverse group of men and women of all ages. Patients with altered mental status or severe medical problems were not invited to participate. The final participants (N = 10) had all started dialysis within the previous 3 to 6 months. The social worker approached each patient and invited participation into the project with the following key statements: “We are trying to make sure that we have given you enough information about the importance of your treatment routine. Can you answer five short questions for me?” The social worker then proceeded to ask the 5 questions listed on the screening tool (Table1).
Table 1. Questions From the Initial Screening Tool
| 1. Tell me your understanding of what could happen if you missed a dialysis treatment. |
| 2. Tell me your understanding of what could happen if you shortened a dialysis treatment. |
| 3. Tell me your understanding of what could happen if you drank too much fluid between treatments. |
| 4. Tell me your understanding of what could happen if you skipped your blood pressure medicine. |
| 5. Tell me your understanding of what could happen if you didn’t eat enough protein. |
Results
Table 2 displays the results of both the screening and educational reinforcement interventions. Only 10% of patients screened could respond with adequate information to all 5 questions. Ninety percent of patients lacked important information in at least 1 of these key outcome areas. During the screening process, the screening-education team noticed that patients struggled to “fill in the gaps” of knowledge, as if they were concerned with disappointing us. They wanted to do well, but responses such as “If I drank too much fluid, my kidneys would blow up” or “If I didn’t take my blood pressure medication, I could have problems with my head” were common. There was a need for more awareness of cardiac risk and overall survival risk among the large majority of patients. With almost half of all dialysis patients dying of heart disease, this is a notable outcome.24
Table 2. Percent of Participants With Adequate Knowledge of Risks Associated With Nonadherence
| Patients initially demonstrating adequate knowledge in all 5 key areas | 10% |
| Remaining patients initially demonstrating adequate knowledge in at least 3 of the 5 key areas | 0% |
| Remaining patients demonstrating adequate knowledge in at least 3 of the 5 key areas following educational reinforcement | 70% |
| Patients showing no improvement following educational reinforcement | 20% |
| Total | 100% |
| In those showing improvement: | |
| Questions answered adequately before educational reinforcement | 34% |
| Questions answered adequately after educational reinforcement | 74% |
The impact of the brief educational reinforcement provided to the 90% of the participants identified as “knowledge deficit” is also very notable. After this intervention, 70% of the sample improved their understanding of health-risk behavior. That level of improvement was significant, with those participants more than doubling their positive scores on the screener (from 27% of questions answered accurately to 58% answered accurately). Only 20% of participants showed no improvement after this brief educational intervention.
Both the patients and the renal team reported a very positive experience with this project and thought the screening effort should be continued for all new patients admitted to the dialysis clinic and provided to them within their first 6 months on dialysis. The dialysis team seemed to feel a sense of empowerment in knowing that a brief and focused intervention during their busy day-to-day work schedule could make such an important improvement in patient care. Instead of waiting for the time to “do it right,” which never seems to come, the team now appears to understand the value of brief “teachable moments” for a patient and the importance of not assuming that the patient on dialysis for a time “already knows by now.” Their endeavor has reminded the team that they are important and likely has contributed to some degree of improved job satisfaction, although that assumption warrants further study.
This project demonstrates the value of interdisciplinary teamwork to achieve positive treatment outcomes in a contemporary dialysis care environment, which is challenged by limited time and resources. The comments of the team now follow.
Lynne LeSage Walrath, MSW, MPH—area administrator
As an area manager of 5 outpatient hemodialysis clinics, I attend many Continuous Quality Improvement meetings. Many times, the interdisciplinary dialysis team and I have discussed the difficulty of continuously educating a diverse group of patients at the right time to optimize knowledge retention and improve our clinical quality indicators. There were usually many good ideas presented, but there were always two seemingly insurmountable problems that got us stuck: time and resources.
The already busy team needed to keep their workload manageable, and I needed to maintain the financial integrity of the clinics. Therefore, streamlining the process by having each discipline take a part of the patient education process and focus it on the area most important to patient’s health and our quality goals—patient treatment adherence—appealed to the team. Working within my budget and utilizing the resources I already possess made this project appealing to me.
Quick and easy educational efforts are the wave of the future in the hemodialysis clinic, so it makes sense to focus our time on the areas that make the greatest impact. Social workers are instrumental to this process as they can screen the patients to use the team’s limited time more efficiently. Each team member did what he or she is best at and the investment of time and resources was small, which makes it an easy sell to the team and a win for the patients.
Vivian Wohlwend, MSW—social worker
As a nephrology social worker with a large caseload, it is hard to find time to provide extra education, which is so necessary to new patients. Taking time during a normal, busy day to ask a relatively new patient “Do you have what you need?” is a challenge. Being able to assess a patient’s needs and knowledge deficits, while at the same time connecting with that patient, is very rewarding. It can be something as simple as asking “Do you understand?” or taking a few minutes to ask, “Where are you?” that can make the difference between a patient’s success or painful struggle.
One of the things that I like best about this job is having a little extra time at the right moment with people. When patients first begin dialysis, they are overwhelmed. They are bombarded with a large amount of diverse information. In many cases, they are still reeling from the shock of finding out that they have kidney failure. The educational information they receive is not absorbed. Complicating this problem is the fact that the patient may be uremic, which makes processing information even more difficult.
When I take time from my busy and chaotic day to assess a patient’s “here and now” experience, I feel that I have made a connection with a patient at just the right time. I can see where a patient may be stuck. Often they are stuck in the area of not fully understanding what they need to know about dialysis to feel in charge of their illness. When I do take the time to educate patients, I find it goes well because, as a social worker, I have general (not specialized) understanding of the medical material. I notice that some patients often listen best to me when I give information in a simple, non-technical manner. I also find that other team members really appreciate any effort I make to help improve care. When I do this, there is greater synergy with the nurses and patient-care technicians. The times when I cannot answer a question easily, the nurses and technicians see me as an efficient referral source for them. They can hit a target quickly and use their specialized knowledge most effectively. When I leave the job at the end of the day, it is these moments and interactions that make me feel job satisfaction.
LaDaska D. Jobe, RN—charge nurse
As a registered nurse at a 96-patient dialysis facility, it is hard to provide adequate education to patients and ensure the information is retained. When the patient is admitted to the clinic they are overwhelmed with many things. Most patients have many questions they would like to ask but either don’t know how or feel the questions are “dumb.”
At the time of admission, the patient is bombarded with information to the point of overload. We must also take into consideration that some patients may not be feeling too well at this time. The nurse or patient-care technician will talk the patient through initiating dialysis to aid in relieving the patient’s concerns. Once the patient is settled and treatment has begun, the nurse will do her initial assessment of the patient’s knowledge and understanding of his or her condition. Some patients don’t know why they are on dialysis or what caused their kidneys to fail. During this time, information is gathered about the patients to see what is needed to ensure the patients are as successful as possible in the management of their disease.
It is a team effort to educate the patients. The nurses, social worker, and dietician often work together to ensure that the patient receives any information that would be considered useful in his or her care.
Craig Thompson—dialysis patient
Dialysis has been an overwhelming experience from the start, so anything I could learn was helpful. A few months into my treatment I was approached by a social worker and asked to complete a questionnaire about my understanding of my treatment and the risks involved in not adhering to the suggestions of my medical team. The questionnaire was about a page in length; most of the questions I answered easily, but it was the ones that I didn’t have the answer to that truly bothered me. However, my social worker took the time to explain the answers to the questions that I didn’t have a clue about! I felt instantly that she was as concerned about my well-being as much as I was. She even went as far as to go over the other questions just to clear up any misunderstandings. The time she spent and the questionnaire she provided were an opportunity to understand better about my treatment and also opened my eyes to the fact that there are people involved who can not only be a source of knowledge and understanding, but who can also feel like a friend.
Appendix A.
Initial Screening Tool
| Patient Comprehension of Importance of Treatment Adherence | |
| 1. Tell me your understanding of what could happen if you missed a dialysis treatment. | |
| Don’t know | Other:____________________ |
| 2. Tell me your understanding of what could happen if you shortened a dialysis treatment. | |
| Don’t know | Other:____________________ |
| 3. Tell me your understanding of what could happen if you drank too much fluid between dialysis treatments. | |
| Don’t know | Other:____________________ |
| 4. Tell me your understanding of what could happen if you skipped your blood pressure medication sometimes. | |
| Don’t know | Other:____________________ |
| 5. Tell me your understanding of what could happen if you did not eat enough protein. | |
| Don’t know | Other:____________________ |
Appendix B.
Post Intervention Screening Tool
| Patient Comprehension of Importance of Treatment Adherence | |
| Reassessment of Perceived Knowledge Deficit | |
| Do you feel you have a better understanding of (knowledge deficit area) after it was explained more to you? | |
| □ Yes. | □ No, I need further explanation. |
| If Yes, what did you learn?__________________________________ | |
| _____________________________________________________________ | |
| _____________________________________________________________ | |
| _____________________________________________________________ | |
| Signature of Social Work Interviewer:________________________ | |
| Date:_________________________ | |
| Knowledge deficit identified | |
| Educational reinforcement provided | |
| by:_______________________ | Date:_____________________ |
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- 1 Please note that any comments made or opinions expressed here today are those of the authors and do not necessarily reflect those of, nor are they necessarily endorsed by Fresenious Medical Care.
PII: S1073-4449(04)00003-2
doi:10.1053/j.arrt.2004.01.002
© 2004 National Kidney Foundation, Inc. Published by Elsevier Inc All rights reserved.
