Long-term Management of the Kidney Transplant Patient: Assessment of Educational Needs of the

Community Nephrologist

Phase II Final Report

Report to the American Society of Transplantation By

Healthcare Performance Consulting, Inc

August 24, 2006

Contents

Background ………. 3 Objectives ………. 3 Methods ………. 4 Qualitative Findings ………. 5 Educational Needs ………. 18 Quantitative Findings ………. 19 Summary ………. 26

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Long-term Management of the Kidney Transplant Patient Assessment of Educational Needs of the Community Nephrologist

Background Traditionally, post- kidney-transplant patients have been under the care of transplant specialists or transplant surgeons (TS) operating out of a transplant center (TC). In recent years, due to a variety of factors, the number of transplant patients has overwhelmed the capacity of transplant centers and specialists to care for these patients on a long-term basis. This has led to a need to optimize the transition of the transplant patient from the transplant specialist to the community nephrologists (CN). As a part of the optimization process, it is imperative to identify and understand specific educational needs of the community nephrologists and other stakeholders with respect to:

timing of transitioning continued management of pre-transplant co-morbidities management of immunosuppressive therapy monitoring for allograft dysfunction development of malignancy infectious complications other related clinical issues patient compliance

A preliminary Phase I of this project consisted of interviews with 5 community nephrologists and transplant specialists. The issues identified in Phase I of the project are explored in more detail, and from several different perspectives (patients, coordinators, etc) in Phase II. Objectives The current study provides a qualitative and quantitative assessment, categorization, and elaboration of educational needs of the community nephrologists. This information is utilized to suggest a comprehensive educational strategy for community nephrologists, in order to bring about a smooth transition of the post transplant patient (PTP) from the transplant center to care provided in the patients community. It is anticipated that implementation of this strategy will provide measurable outcomes of optimal clinical care for the transplant patient.

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Methods Healthcare Performance Consulting, Inc utilized the following methods in order to achieve the objectives of this study:

Literature Review A comprehensive review and assessment of current literature relating to the current problem, as specified above, was conducted. Abstracts and references were obtained using PubMed. In addition, relevant guidelines were obtained using the Agency for Healthcare Quality and Research (AHRQ) National Guideline Clearinghouse (www.guidelines.gov).

In-depth Interviews

A series of unstructured, open-ended interviews were conducted with transplant nephrologists, transplant surgeons, community nephrologists, transplant coordinators, and transplant patients. Interview subjects were recruited from transplant centers, private nephrology practices, and patient support groups in California, Florida, Indiana and Pennsylvania. Interviews were conducted either live or by telephone and lasted from 45-90 minutes. Subjects were paid $50 (patients) to $300 (physicians) for their participation. The initial survey guide was developed based on the issues identified in the literature and from findings in the Phase I interviews. The interviewers used a constant-comparative technique to refine the interview questions as the interviews progressed (one to the next). Subjects were questioned about practice setting, patient population, typical short-term post-transplant course, and special clinical interests. This established a background and framework for the remainder of the interview, where the main issue of transitioning the patient was discussed. Key issues that arose in initial interviews were explored in greater depth in subsequent interviews. Thus, the structure of the interviews evolved as the interviews progressed.

Patient Group Discussion Patients from each of the targeted areas were recruited to participate in patient group discussions. Four groups were planned, with 4-7 participants in each group. The patients represented a variety of ages, socioeconomic status, health status, and time since transplant.

Community Nephrologist Group Discussion

Community nephrologists from each of the targeted areas were recruited to participate in group discussions. These discussions were held in Philadelphia, Indianapolis, Los Angeles and Jacksonville. Each of the groups was asked about their main concerns with respect to managing post-transplant patients. These concerns were then ranked and

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discussed in order of priority. All were issues that had previously been identified by the individual interviews. The physicians were then asked to evaluate and provide feedback on the clinical competencies in the Change Readiness Inventory. All groups expressed agreement on the importance of each of the competencies, lending credence to the findings of the individual interviews and providing face validation for the CRI.

Change Readiness Inventory (CRI) The Change Readiness Inventory (CRI) is a tool to measure forces, attitude and barriers to change. It also contains items to evaluate clinical competencies for transitioning and managing the PTP. These items are used to provide a self-measure of clinical competence, and should be used to drive content of CME interventions. The competencies for the CRI were developed from interview findings, relevant guidelines, and current literature. The CRI was distributed by a link through email. Qualitative Findings The following section will review the findings from the individual interviews and the patient discussion group. General findings for each of the 4 stakeholder groups appear first. That is followed by a listing of the common themes that emerged from these interviews and a cross-comparison of the perspectives of each of the stakeholder groups, where relevant. Recommendations follow each of the themes and comparisons. Because a primary use for this report will be development of educational programs, a separate section on “Educational Needs and Formats” follows the findings. Number of participants by Type and Method

Method Community Nephrologist

Transplant Specialist

Transplant Coordinators

Patients

Interviews 10 10 16 10 Discussion

Groups 25 2 2 16

Total 35 12 18 26 Interview Findings: Community Nephrologists The community nephrologists (CN) that were interviewed came from a variety of practice settings including solo and group practices, and metropolitan and suburban areas. The community nephrologists estimated that, on average, about 5% of their practice is made up of post-transplant patients (PTP). The remainder of their practice consists of chronic kidney disease and hypertensive patients. The individual interviews exposed a variety of issues that were of concern to transplant surgeons, transplant specialists, and community nephrologists. All agreed that the issue of transitioning the transplant patient was very relevant and of concern to them.

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The CN described a typical post-operative scenario of receiving a phone call from the transplant center and a discharge summary shortly after surgery. Patients typically leave the hospital after 3-5 days, and are seen by the TC often. The frequency with which they are seen by the CN depends on how often they are being seen at the transplant center. A typical routine is that patients are seen every 3-4 weeks for the first year, tapering down to quarterly or twice yearly visits. There may be considerable variation on the frequency of long-term visits depending on the clinical course of the patient, lab results, etc. Patients that are stabilized generally continue to visit the transplant center once or twice a year after transitioning back to the community nephrologist. The CN were asked several questions relating to their own key concerns about transitioning the PTP. They were asked about what they feel are the most important clinical and non-clinical issues, including specific problems, causes of these problems, and potential solutions to these problems. A number of themes emerged that are discussed below. If themes emerged in earlier interviews that were not brought up in later interviews, the interviewer asked whether that specific issue was a concern. This technique brought a variety of perspectives on the common themes. The key concern expressed by the CN was around the issue of communication. Communication with the transplant center seems to be the deepest source of dissatisfaction with CN. This dissatisfaction stems from several issues, and CN reported that they may:

Not be informed in a timely manner when patient is transplanted. Not be provided routine communications (discharge summary, chart notes, labs,

etc.) in a timely manner. Not be informed about clinical issues with patients, changes in therapy, etc. Not be provided with the rationale for protocol changes, drug and dosage

adjustments, etc. Decision is made without their input or understanding. Feel that they are “talked down to” by TC specialists, and made to feel dumb. Not have access to attending physicians, and end up speaking to residents or

fellows. A second key concern expressed by CN was their lack of understanding of immunosuppression. New protocols, new drugs, new dosages, etc. contribute to a feeling of not being up-to-date in this area. While they realize that the transplant specialist is and should be the expert in this area, they still want to understand the rationale for changes in therapy. This relates closely to the communication issue. CN don’t want to control IS in these patients, they simply want to be informed and understand why changes are being made. They feel that this communication has educational value to them, and helps them to better understand and manage these patients. Additional concerns and educational needs were expressed by the community nephrologists. These are elaborated on below in the Common Themes section and Education and Training section.

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Interview Findings: Transplant Specialists and Surgeons The physicians described a typical post-operative operative course of 1-2 days in ICU, followed by transfer to a floor. Patients typically leave the hospital after 3-5 days, and are seen back at the transplant center (TC) within 2 weeks. There is considerable variation in how care is provided beyond the immediate post-surgical period. Most patients are transitioned to their referring nephrologist over a 1-year period. Assuming no serious complications, the frequency of visits to the transplant diminishes while visits to the CN increase. Long-term, patients will see their CN 2-4 times a year, and will visit the TC 1-2 times a year. However, this varies depending primarily on 2 factors: geography (distance to the transplant center) and access to a community nephrologist that provides care for PTP. Many CN that are very close geographically to a transplant center will not provide care to these patients. Conversely, CN who are at a distance from the TC will often provide more care for these patients. All transplant specialists described a communication process that typically begins with a phone call following surgery, then a discharge summary along with lab results, medications, etc. They report that subsequently CN are kept informed on any developments with the patient, including chart notes, lab results, medication changes, protocol changes, etc. Based on our interviews, there is some discrepancy in how well these systems work. Many CN are dissatisfied with the communication process. This issue is explored in more detail in the Themes section. The biggest concern for specialists is the expertise of the CN in transplantation issues. They feel that due to a relatively few number of PTP per CN, and an ever-changing landscape of immunosuppression therapies, it is difficult for the CN to stay abreast and provide quality care without guidance from the transplant center. Many older CN did not have transplant medicine as part of their fellowship, so it is especially difficult for them to develop and maintain competence in the field. CN are cognizant of their deficiencies here, but believe that the TC can play a stronger role in helping them to maintain competence. Interview Findings: Transplant Coordinators Sixteen transplant coordinators from the targeted cities were interviewed. Fourteen were post-transplant coordinators at the transplant centers. The remaining 2 were office nurses from CN offices that successfully handle a large number of PTP. In essence, these nurses function as “community transplant coordinators”. Their participation added an important perspective to this project. Following transplantation, patients may have more contact with transplant coordinators than with any other provider. In many ways, patients’ perception of the quality of their care seems to reflect the relationship with the transplant coordinators. Coordinators spend a large amount of time dealing with transplant patients. Most will spend 2 half-

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days per week in clinic, and the rest of the time on the phone or computer following with patients or working on solutions to their problems, inquiries, etc. Many transplant centers assign coordinators to specific referring nephrology offices and their patients. This helps improve continuity of care as well as communication between TC and CN. It also helps to build rapport with patients. Like CN, coordinators feel like the biggest concern in the transition period is the communication between transplant center and community nephrologist offices, as detailed in the Themes section of this report. It is clear that the transplant coordinators are a critical resource in managing the post-transplant patient. PTP are generally regarded as high-maintenance patients by TC and CN alike. Coordinators bear the brunt of that maintenance. Their role is important in monitoring patients, investigating insurance coverage, securing medications, encouraging compliance, following up, answering questions, and arranging additional resources for the patient such as nutritional counseling, etc. Interview and Group Findings: Patients Three group discussions and a total of 10 individual interviews were conducted in the four areas of study. Participants for both were recruited via transplant centers, community nephrology offices, and patient support groups. The patients that were recruited from support groups appear to be at a higher socio-economic and educational level than the average PTP, although there were no specific measures on this. Additionally, these patients tended to be patients who are more involved and active in managing their own care. Therefore, some of the qualitative impressions reported here may be skewed as compared to the general post-transplant population. Patients reported a wide variety of impressions and experiences with their transplant surgery, the transition process, and the ongoing continuum of care with transplant center and community nephrologist. Many of the patients have a high regard for the quality of care that they receive from both. Their perceptions of their care seem to be influenced as much by the quality of communication with the transplant center and community nephrologist, as with the medical outcomes. Interestingly, patients see communication between CN and TC as a very important area. In some cases, they feel like they are the vehicle for delivering clinical information between the two. While they don’t necessarily perceive that there are problems with communications, they don’t want to take a chance that some information might be missing. Several patients reported taking the initiative to fax all current labs to both doctors – even though they realize that both receive these reports routinely. Additionally, patients are more comfortable when they feel like TC and CN are working together for their benefit. A patient in one group described a scenario where the TC “made a suggestion about tweaking my meds”, but the final decision was left to CN. Other patients described the same scenario in reverse, with the CN making a suggestion to TC, getting agreement, and then making the change. What was important to patients was

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NOT who made the decision or the change, but that both TC and CN were part of the decision. Most patients clearly regard the transplant specialist as the authority and final word on issues related to immunosuppression. Beyond that, their views on the transition process and who is best equipped to provide ongoing care are influenced by their personal experience. At one extreme, patients that have had early complications and spent a great deal of time at the transplant center seem more comfortable with the TC. Even though they may be stable now, they remain in frequent contact with the TC either by phone or in person and eagerly anticipate upcoming visits to the TC. There is almost an aspect of dependency to their relationship with the TC. Conversely, patients who have had few complications and are well stabilized tend to feel that the CN can provide for most of their medical needs. Geography plays a significant role with the patient. Those who live closer to the TC tend to utilize it much more frequently than those at a distance. Indeed some patients feel that their annual visit is a waste. Said one patient: “Why should I drive 4 hours and stay overnight for routine lab tests and a 10-minute visit? They don’t even [do a physical exam]. It’s a waste.” Interview Findings: Common Themes and Cross-Comparisons Many of the themes that emerged from this study were the same as those from the Phase I interviews. However, the different stakeholder groups (specialist, community nephrologists, transplant coordinators, patients) had different perspectives on each of these issues. In this section we will review the themes and discuss the similarities and differences between the stakeholder groups. Potential solutions and recommendations are provided in each area – but should not be viewed as comprehensive or in priority order. Quantitative data are presented later in the report.

1. Level of expertise of the community nephrologist This theme arose in every interview and was a major concern for both transplant specialists and the community nephrologist. The primary clinical concerns surrounding this issue are: immunosuppression protocols (below), new drugs, drug interactions, management of side effects, infection, chronic co-morbidities (hypertension, diabetes, dyslipidemia) and differentiating late-rejection from other issues. Immunosuppression therapy was by far the most frequently mentioned concern. That has been broken out as a separate theme and is explored below, as is the management of primary care problems with the PTP. Interviewees felt that the community nephrologists’ level of expertise and comfort was directly related to the number of years in practice (i.e. whether they had specific transplant training in their fellowship, and how long it had been since that training). Many older physicians have never had specific transplant training at

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all. Furthermore, interviewees felt that rapid change in this area makes necessary constant updating through educational programs to maintain expertise. Closely related to the educational need is the issue of seeing enough patients to implement knowledge and feel entirely comfortable with PTP. Several interviewees referred to this as the “art” of caring for the transplant patient. Many CN are never really comfortable with these patients because they don’t see enough of them. Both specialists and CN recognize that the root of this issue is the complexity of managing these patients. There are many variables at work with these patients, including their immunosuppression protocol, co-morbidities, infection, drug interactions, compliance, etc. There is also a dynamic tension in the fact that TC prefer that CN refer patients immediately if there is any type of problem. This is understandable, but unfortunately it deprives CN of a learning opportunity with that patient. Patients tend to have a high regard for both the TC and their CN. The key concern for the patient is to understand who is responsible for what. Most feel that the TC is the primary authority for their immunosuppression therapy, but there is considerable variation beyond that. Several implications emerged from the interviews:

Have a “designated hitter”, a CN in a group practice that manages all of the PTP. This gives that individual more clinical experience and provides a source of expertise within the practice.

TC Outreach programs – many, but not all, transplant centers have some

sort of outreach programs. This takes a variety of forms. In some cases, a specialist will travel and speak to a group of referring nephrologists in a dinner setting. In others, an entire team (nephrologist, surgeon, coordinator, social worker) may visit a referring practice and interact with all of the CN and nurses together, discuss patients, provide protocol updates, etc. In one particularly successful collaboration, a TC sends a specialist to a large (8 partners) CN office once a month to see patients. The patients don’t have to travel to the TC for their routine visit, and the specialist is able to discuss patients immediately with the CN. It is a tremendous learning opportunity for CN.

Continuing Medical Education (CME) – medical education is an important

part of maintaining CN competence and is discussed below.

Patients need to understand the role of both the TC and CN in their care. This needs to be decided with each office and clearly communicated to the patient. This gives the patient reassurance and guidance about who they should contact for any problems they encounter.

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2. Immunosuppression (IS) Therapy This theme is separated from other clinical expertise (above) because of the level of importance that the interviewees attached to it, as well as the complexity of the issue. The rapidly changing landscape around immunosuppression is the single greatest cause of knowledge and skills becoming outdated, thus making necessary constant training and education on this topic. New drugs, dosages, and combinations are constantly being introduced and studied. It is difficult for anyone other than a transplant specialist to stay current with IS therapy. Complicating the issue is the fact that IS therapy may complicate primary care problems of the patient such as hypertension, hypercholesterolemia, and diabetes. Additionally, generic substitution by pharmacists may cause drug levels to vary. Several interviewees felt that the lack of standards, or rapidly changing standards, makes it difficult for the CN to stay current in the area of IS therapy. Specialists and CN alike agree that the specialists are and should be the expert in IS. Even CN practices that manage large numbers of PTP will not make adjustments without consulting a specialist. If there is disagreement, they discuss it and usually yield to the specialist. However, there are 3 things that CN really wants to understand when changes are made in IS therapy.

o Why is the change being made? o What are the relevant blood levels that are targeted? o Why is that the target?

Patients usually look to the TC as the experts in IS as well. This message is imprinted on them following their transplant, and reinforced by their CN. Some implications from these interviews are:

TC should retain ultimate control over immunosuppression management. CN needs to be informed of the rationale for any changes. They don’t

necessarily want control – they just want to understand and be informed.

Information can be provided in a variety of ways, including: outreach programs, newsletters, CME, letters, phone calls, etc. Every contact between TC and CN should be treated as an educational opportunity.

3. Primary medical care of the PTP There is variability amongst the locations in the way the primary medical care of PTP is conducted. In some locations primary care physicians manage this care and in others the CN are forced to act as a primary care provider for PTP. CN mentioned that many internists and family practitioners are uncomfortable and

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unwilling to care for these complicated patients. The concerns frequently mentioned were: hypertension, hypercholesterolemia, and diabetes. Overlaying this issue is the fact that immunosuppression drugs may themselves play a role in complicating primary medical disorders (e.g. corticosteroids causing hyperglycemia). In most instances the TC is equipped to care for the primary medical care of the PTP through nephrology clinics. In one case, a specific nephrologist will see patients in clinic for PC issues. In all cases, PCP and specialty clinics are available at the TC to manage these issues. CN generally prefer not to manage primary care issues, but in many cases they do. This is because local PCPs do not want to manage these patients (because they are complicated and labor-intensive) or because they are seeing these patients routinely, they tend to end up doing primary care. If patients have more serious chronic health problems, these are usually managed by another specialist (cardiologist, endocrinologist, etc.). Implications for this issue include:

The need for CN to maintain competency in common PCP issues, or to be able to refer patients to a PCP who are willing to manage the PTP.

The need for PCPs to have some fundamental education in

immunosuppression.

The need for close collaboration and communication between all physicians that are involved in a patients care, to ensure continuity and quality of care.

4. Malpractice Concerns:

Also closely related to the education/expertise issue is an underlying concern of malpractice lawsuits. CN are aware that they are often ill-prepared to care for more than a simple PTP with few clinical complications. Interestingly, they felt that the closer they were geographically to a transplant center, the more “exposed” they were legally. This did not seem to be a major issue, however, with most CN interviewed. There did seem to be an underlying concern that not consulting a specialist about IS changes would be a malpractice risk. In addition, there is an impression from some CN that managing PTP results in higher malpractice insurance rates. Implications for these findings:

Include the marginal cost of malpractice insurance as part of any financial analysis of managing the PTP.

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Emphasis on communication and consultation with a specialist regarding changes in immunosuppression.

5. Lack of Resources:

Clinicians were asked about what resources were utilized in managing the PTP. The two items that were repeatedly mentioned were lab tests and staff time, especially nursing staff. The issue in the CN office is lack of rapid access to lab reports, inability of community hospitals to test for necessary blood levels, no access to same-day biopsy, etc. The lack of adequate laboratory resources inhibits the ability to rapidly diagnose and manage problems. The longer turnaround time inhibits fine-tuning of medication dosages. Transplant centers that have ready and rapid access to biopsy, labs, ultrasound and other diagnostic tools are better equipped to manage PTP. Staff time was frequently mentioned as a heavily used resource in managing the PTP. In particular, a great deal of telephone time is utilized in ensuring patient compliance, tracking down lab reports, counseling patients, securing medications and so forth. In the transplant center, these functions are performed by transplant coordinators. Their experience is valuable, enabling them to handle these issues efficiently. It is much more difficult for a CN office nurse to manage these issues. Additional resources available at the transplant center include social services, financial counseling and dietetic counseling. Implications:

For higher quality care at the CN level, there is a need to develop better

access and turnaround on lab tests. PTP are labor intensive, and experienced nursing staff is a valuable

resource in managing these patients. Handling a greater volume of PTP in the CN office may require additional staff hiring and training. This also has implications on the financial considerations of managing these patients (below).

6. Financial Concerns:

Interviewees were asked about the financial implications of caring for PTP. The specialists mentioned this financial concern as an issue for CN more often than did the CN themselves. The sense of caring for patients in the community was evident in many of the CN interviews and tended to override the financial concerns with CN. However, in contrast, several interviewees did bring up the fact that there is less financial incentive for a CN to care for a PTP than for a dialysis patient. One CN estimated that a chronic kidney disease patient generates about $4000 in revenue per year, while a PTP generates “maybe $500”. While the chronic kidney disease patient is clearly more “labor intensive”, it is still more

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lucrative to care for these patients than the PTP. CN were quick to point out that it doesn’t influence how they care for these patients. It is difficult to ascertain how much of a role financial concerns play with respect to whether or not CN elect to manage PTP. The Change Readiness Inventory data below attempts to quantify this issue. Implications:

While CN do not report financial concerns as a factor in how they manage patients, it is potentially a factor in whether they care for PTP. Quantification of this issue, as addressed in the CRI section, suggests whether pursuing changes in reimbursement should be considered as a strategy.

7. Communication

Communication is an issue that seems to cross over into nearly every other issue. When asked about communication between transplant centers and community nephrologists, all interviewees described a fairly common process beginning with the discharge letter at the time of transition. Most CN felt that this was an effective beginning, but that later communication, consisting of a brief letter or phone call, was inadequate. Communication was viewed somewhat differently between transplant center doctors and community nephrologists. CN cited a number of problems, including:

Lack of continuity, dealing with different physicians each time. Lack of access to quick replies on dosing adjustments or other relatively

simple questions. Confusion surrounding IS dosage changes. Lack of communication over what the target blood levels of medications Perception of arrogance on the part of TC specialists – “talking down”. Changes in therapy without an explanation of the rationale for the change. Inability to reach the attending physician, having to speak with a resident.

Specialists from the transplant centers tend to acknowledge these issues as being real. From their perspective however, there are other contributions to the problem, including:

Great variations in how much information CN want. Some complain about being “flooded” with lab reports, chart notes, etc.

System problems within the TC that cause delays getting information to CN.

CN waits too long to consult TC on potential problems, causing additional clinical problems.

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TS and CN pointed to several conditions that were necessary in order for the TC and CN to successfully communicate and work together to provide high quality care. These conditions include:

A team approach: there are clear communication expectations, and mutual agreement on roles with respect to managing the PTP.

Education: TS uses changes in patient management as a teaching

opportunity for the CN, explaining the rationale for why they are doing what their doing. This may be accomplished through multiple formats as suggested below in the Education section.

Regular communication in multiple forms of current protocols, changes,

why changes are occurring, etc.

Outreach: TC schedules regular opportunities to visit with referring physicians. This may be an individual physician that gives a presentation or conducts a case discussion, or the entire team (surgeon, specialist, and coordinator) that visits with a CN office.

Adequate systems and human resources in the TC to support routine and

timely communications.

Single point-of-contact: a designated coordinator and specialist to deal with specific referring offices. This includes accountability for communicating with those offices. CN prefer 24/7 access to a transplant specialist. As one CN said, “I want a cell and home phone number, and I want a call-back within an hour”.

8. Geography Geography is a factor that was mentioned by all stakeholder groups. Most of the physicians made a distinction between patients and physicians who were local, and had ready access to the transplant center, and those who were distantly located. Local physicians felt less of a need to manage the PTP, while distant physicians took them back more readily, partly due to the distance from the TC. Geography is clearly an issue for patients in the transition process. It is often a hardship for patients to travel several hours and spend a hotel night, in order to be seen at the TC. Stabilized patients who are far from the TC are happy to be released to CN, and in many cases may prefer to stretch out their return visits at a more rapid pace.

9. Patient Issues

Patients vary in their level of involvement in their own care. Some patients take the initiative to ensure good communication, are acutely aware of their health

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issues, are highly compliant, etc. Conversely, transplant coordinators report that many patients are not as involved. They often feel like they are babysitters for the PTP, managing issues that the patient should do for themselves: securing medications, finding insurance coverage, negotiating with insurance companies, making appointments, reminding patients to get lab tests, etc. This requires a great deal of human resource to manage these issues for the patient. Coordinators feel that patients could do many of these things for themselves – but they are not motivated. The implication is that improving this process should involve patient tools and education in addition to physician or system interventions.

10. Models of Care While this study focused primarily on 4 transplant centers, some patients that were interviewed had been transplanted at other institutions. Additionally, while most CNs interviewed referred primarily to the TC of interest, almost all had experience with other centers as well. This provided some additional perspective on the models of care provided at each of these transplant centers. Most transplant centers are similar in their short-term care (within the first year post-transplant). The normal routine, or “standard model” is for the patient to be hospitalized for 3-5 days and then seen on an outpatient basis with declining frequency over the course of a year. During the first year, they may begin to visit a CN. Beyond the first year, assuming a stable patient with no graft complications, the patient may be seen by the TC at a regular interval of 6 months or 1 year, and by the CN 2-4 times/year. However, this routine varies somewhat depending on the transplant center, the patient, and their community nephrologist. Patients with an unremarkable post-operative course, a healthy graft, and a good relationship with their community nephrologist, may prefer to be seen less frequently at the transplant center. Some do not wish to visit the TC at all, considering it a waste of time. Conversely, patients with a more difficult post-op experience, and lower trust level with CN, may prefer to receive all their care from the TC. Geography is a factor here, as is the willingness of the referring CN to care for the PTP. Additionally, there are some TCs that tend to assume full care of the PTP. While some CN may accept or prefer this, others perceive this as “stealing the patient”, and elect to send their patients to other TCs. Many TCs make an effort to transfer care to the CN, but some patients remain with the TC for the reasons outlined previously. There are some variations on the model described above. In one case, a TC keeps a patient close by for 4 weeks, with tests and examinations nearly every day. After the initial 4 weeks, the patient is tapered down and begins visiting a CN, similar to the standard model. Another source of variation is in how TCs handle the “pre-work” that is required for return visits. Some centers require that all lab testing, physical exams, etc. be done prior to coming to the transplant center. Others prefer that the work be done

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at the center. Patients generally preferred to do it at their home location if it was any distance from the TC, preferring to minimize their time away from home. The model nephrology office: Variations on the standard model may be driven by the CN. One CN was identified as being particularly successful at managing PTPs. This office sees patients as soon as they return home (usually within a week following transplant); and the patient does not usually return to the transplant center until their 1 year anniversary, and once/year afterwards (assuming no complications). This is partly due to geography (the TC is 3+ hours by car) and partly by desire of this office to closely manage their PTPs. The perspective of all 4 stakeholder groups interviewed (TS, CN, Coordinators, Patients) suggested this office as a model for successful CN care of the PTP. There were several characteristics that distinguish this office:

A genuine desire to take care of these patients. The CN from this office felt like it was their responsibility to continue quality care with these patients. They had cared for the patient while on dialysis and were prepared to manage them following transplant. “These are our patients, and we want to take care of them”.

An aggressive attitude towards maintaining competency in immunosuppression and care of the PTP. These physicians keep their clinical competencies sharp by a variety of means, including: good communication with transplant specialists, outreach programs from the TC, CME, ASN Self-assessment (NephSAP), JASN, and industry representatives and programs.

A highly competent nurse that functions much like a transplant coordinator. This nurse is a key resource of the CN. She is able to educate patients, gain compliance, secure medications, assess problems, and provide many of the functions that a coordinator might provide in the transplant center.

Communicate successfully with patients. Patients expressed that these doctors “never talk down to me”. Therefore they are more comfortable telling the doctor of any problems or concerns they may have. They are also more compliant because of this.

Take initiative to communicate with TC. They take the initiative to call the TC to find out how the transplant went and when the patient will be released, and schedule a visit immediately upon the patients return. They are aggressive in getting the information they need about their patients. The TCs are more responsive to this office due to their proactive approach.

Encourage and work with the TC to provide outreach programs 2-4 times per year, enabling them to discuss specific patients, learn about new protocols, and develop rapport with the specialists and coordinators. A typical outreach program consists of a 15-20 minute clinical presentation,

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followed by discussion of specific patients. Coordinators may also meet separately with office nurses to discuss patient issues.

The interview portion of the project was specifically designed to be qualitative and open-ended in nature. As the interviews progressed, it became clear that the issue of transitioning the transplant patient was much more complicated than simply identifying educational needs. Clearly there are educational needs for the community nephrologist that will help in the transition process. However as the findings show, there are significant other issues that need to be investigated and addressed as well. The interviews and discussion group supported and complemented each other. There was significant overlap in the issues brought out with each method. All participants seemed to agree that ongoing experience with the post-transplant patient, in addition to continuous training and education in managing these patients, was the key to better post-transplant care. Educational Needs The interviews suggested that educational resources and programming should focus primarily on the following. The Change Readiness Inventory was utilized to quantify the extent of perceived need in these areas. Screening recommendations for transplant candidates Immunosuppression protocols – new agents, induction, and maintenance Immunosuppression protocols for special populations: pediatrics, live vs. cadaver

graft, co-morbidities. Infection in the immunosuppressed patient Acute rejection Diagnosis and management of BK virus Diagnosis and management of cytomegalovirus Drug interactions with immunosuppressive agents Primary medical care of the immunosuppressed patient Co-morbidities: how hypertension, hypercholesterolemia, and diabetes affect the

management of the PTP. How medications for these conditions may interact with immunosuppression or kidney function.

Psychological management of the transplant patient. Identifying late graft rejection. Anemia Special concerns for pediatric patients

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Quantitative Findings: The Change Readiness Inventory© (CRI) Overview The Change Readiness Inventory is a tool designed to give physician learners a voice in developing educational interventions that are relevant to them. This assessment measures forces that drive change, physicians attitudes towards making a change, their image of change, and perceived barriers to making changes in practice. All measures are self-assessed, and are answered by the physician with respect to managing the transplant patient. An electronic version of the CRI was developed using the QuestionPro® website. The link to the website was provided via email to 2033 nephrologists from the AMA database. Four hundred nine recipients actually opened the email, and 71 completed the survey, for a 17% response rate. Of these 71 completed surveys, 44 were identified as true community nephrologists (CN), while 27 were identified as either transplant specialists or academic nephrologists (TC). While the 17% response rate is relatively low, there was little control in getting the link to the community nephrologists. The list was obtained from a vendor that actually forwarded the e-mail link. Obviously many of the recipients blocked the e-mail or did not respond due to other factors. Demographics There were a number of demographic questions included in the assessment pertaining to practice setting, years in practice, training in transplantation, management of transplant patients, and distance to transplant center. Nearly all (96%) had formal training in transplantation and accept transplant patients in their practice (92%). Regarding practice setting, most of the respondents were either in a group practice or academic medical center. For analysis purposes, those that responded “solo practice”, “group practice”, “managed care”, or “other” were considered to be community nephrologists. There were 44 of these respondents. Those that answered “academic medical center” or “transplant center” were not considered to be community nephrologists and placed in the TC group. Because geography was a key factor arising from the interviews, 2 questions were asked about distance from the transplant center. Twenty seven of the 44 (61%) CN responding were within 50 miles of the transplant center. Most CN refer patients to the transplant center nearest them. Years in practice showed a broad distribution, with < 5 years receiving the most responses, 21 (30%). This may have included residents and fellows since the majority of these were TC physicians. Six respondents did not specify years in practice.

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Years in Practice

0

5

10

15

20

25

Total

0-5 6-10 11-15 16-20 20+

Count of Yrs

Yrs

Distance to Transplant Center CN Only

0

5

10

15

20

25

30

Total

# R

espo

nden

ts

>50 miles<50 miles

ConsSet CN

Count of NearFar

NearFar

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Most of the results below are based on CN responses alone. However, the results contain some comparisons, where relevant, between the CN and the TC. Forces There were 9 forces for change measured by the CRI. Forces are considered significant if they average over a 3 rating, on a 5 point scale. The charts below show the average responses, followed by the 9 specific items related to forces for change.

Forces

1

2

3

4

5

1 2 3 4 5 6 7 8 9

CN

1. At this stage of my career, building special competence in this area of my practice is more important.

2. I feel pressure from some colleagues to adopt new procedures in this clinical area.

3. I wish I were more knowledgeable in this area.

4. The expectations of the healthcare organizations in this community are a force for change in this area of my practice.

5. Lately, my patients have had more problems in this area than I believe they should.

6. My friends or family members have experienced a problem related to this area of clinical medicine.

7. New information in the literature has increased my interest in adopting new procedures in this area.

8. Recent regulations or policies require that I do things differently in this area of my clinical practice.

9. There are few financial advantages to changing my approach in this area of practice.

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There was agreement with statement #1 along with a slight agreement to statements, #3, #7 & #9. Statements #3 & #7 both deal with professional forces which are the forces most often associated with change. Changes associated with these forces are usually incremental and the efficient use of credible resources will most often lead to learning. The highest rated statement is #1 which is associated with a personal force. Responses to this were consistently high across all age groups. Previous research indicates that, for those early in their careers, agreement with this statement indicates a desire to stand out from their colleagues. For those early or late in their careers, agreement indicates a desire to better fit in with their colleagues. Statement #9 is a reverse stem item. Agreement with this statement reflects the respondents’ feelings that a financial advantage is not present. This indicates the need to emphasize the clinical advantages, patient outcomes or confidence gained by the learner. Attitude toward change There are 3 questions on the CRI relating to attitudes toward change. This is useful in determining physicians’ motivation towards making a change in their practice. The more physicians are uncomfortable with current practices, the more likely they are to change.

Attitude

1

2

3

4

5

1 2 3

CN

In regard to managing post-transplant patients…

1. The way I practice in this clinical area is acceptable to me.

2. I may need to change one or more of my clinical practices in this area.

3. I plan to change the way I practice in this area in the near future.

These scores indicate that the respondents are fairly comfortable with their current practices. There is agreement with the statement on current practices as evidenced by the responses to statement 1. The physicians are neutral on statements 2 and 3, indicating a

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need to clearly demonstrate the advantages of change including increased competence and patient advantages. Image of change Physicians may resist change if their image of making that change is overly complicated, as compared to the potential benefit to be gained in making that change. If their image is not realistic, i.e. complicated when it should be simple or vice-versa, then they interventions should be designed and communicated in a way that corrects that image. In addition, they must see advantages to changing their practice and must be able to envision those changes fitting into and making a positive impact in their practice.

Image

1

2

3

4

5

1 2 3 4 5 6

CN

Changing the way I practice in this area…

1) Seems relatively simple.

2) Seems to offer a significant financial advantage.

3) Seems to offer a significant clinical advantage.

4) Does not seem to be compatible with my overall approach to care.

5) Seems more difficult because it is hard to gain direct experience with innovations in this area before deciding to use them routinely

6) Is difficult because it is hard to observe the appropriate use of innovations before deciding to use them in my practice.

Based on the results, it will be necessary simplify the image of change showing how current practices can be modified. There is no perceived financial benefit to changing the way post-transplant patients are managed but the community nephrologists do see a clinical advantage to changing. These clinical advantages should be emphasized in all efforts. Simulation of the clinical setting will aid physicians in making changes in their current practices.

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Competencies Competencies developed earlier in this project were included in the CRI to aid in quantifying the perceived needs of the CN. Perceived needs should be utilized in developing activities of interest to the audience.

Competencies

1

2

3

4

5

1 2 3 4 5 6 7 8 9 10 11 12

Competency #

CN-PresentCN-DesiredTC-PresentTC-Desired

Ability to: 1. ensure effective communications with the transplant center.

2. identify acute rejection in the post-transplant patient (PTP).

3. differentiate immunosuppression protocols.

4. recognize potential drug interactions with immunosuppression regimens.

5. assist patients in securing the necessary medications.

6. ensure patient compliance with medications, routine visits, and laboratory tests.

7. assist the patient in dealing with the psychological issues associated with their transplant.

8. treat routine illnesses that are usually managed by a primary care physician.

9. manage co-morbidities (hypertension, diabetes, hyperlipidemia).

10. diagnose infection in the PTP.

11. manage anemia.

12. identify signs and symptoms of late-graft rejection. Only 2 of the desired competencies are below a 4.5 average score. This occurred with competency #7 for the community nephrologists and #8 for the transplant center nephrologists. This shows a lower desired expertise or importance for these items.

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For the community nephrologists, the lowest rated present abilities are #5 & #7. The TC nephrologists rate themselves lowest on # 5, #6 & #7, respectively.

GAP

0

0.5

1

1.5

1 2 3 4 5 6 7 8 9 10 11 12

Competency #

CNTC

The gap, or difference between the present ability and desired ability, represents perceived need by the learners. Using the 5 point scale, any gap above 0.5 can be seen as a significant need. The competencies with large gaps over 1 may need to be broken up and dealt with incrementally since the perception of need is so great. All competencies except #8, #9 & #11 have significant gaps for the community nephrologists. When the community nephrologists were divided into groups, using distance from the TC, the desired competency by the community nephrologists closer than 50 miles to the TC was rated lower than 4.5 for both #5 & #7. All of the desired competencies were rate 4.5 or above for the community nephrologists greater than 50 miles from the center.

CN Needs by TC Distance

0

0.5

1

1.5

1 2 3 4 5 6 7 8 9 10 11 12

<50 GAP>50 Gap

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Competencies #1 & #3 had a significantly higher gap for the distant community nephrologists, 1.2 versus 0.7 for the more local physicians. Competency #10 shows a significant gap for both groups, but is slightly higher for the less distant physicians. Summary and Recommendations Communication The interviews in the qualitative research indicated that in addition to the clinical needs indicated above, the best practices of successful CN/TC relationships indicate that some formal processes for communication is necessary. The gaps seen in the quantitative portion of the project were consistent with those of the interviews and group discussion. These gaps were larger for distant CN than they were for local physicians. This research suggests that the TC may overestimate their current level of communication with the CN since the CN suggested this is currently a problem. It will be necessary to first show physicians at the TC that they are not meeting the needs of the CN before tools and resources are developed to aid in this unforeseen problem. Only then would those resources be utilized. These communication tools should serve as a TC update on new protocols with the reasons for the change and references for those changes. This might be in the form of a newsletter that is put together at a national level and modified by each TC for local information.

The CN who successfully manage PTP say that their sense of community and the need to take care of the local population is important to them. This feeling could be leveraged in educational programs to both enhance participation and maybe encourage CN to take these patients back into their practice. As described above TS mentioned the economics of managing these patients as a problem in transitioning these patients back to CN, whereas the CN that we have spoken with by in-large, did not mention this issue. Formats Interviews with community nephrologists indicated that they view the coordinated management of PTP as a learning opportunity. While traditional learning formats are helpful and necessary, there should be a priority placed on non-traditional learning in various modalities. These may include:

Small-group case-based presentations, utilizing case examples of patients co-managed by CN and TC.

Patient case-studies written up as educational tools, with explanations and references for specific clinical decisions.

Utilizing existing TC outreach programs as an educational forum, with specified learning objectives.

Explanations and rationales of protocol or therapy changes, written up and evaluated as an educational exercise.

Forces, Images and Attitudes toward Change

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The responses to the Forces, Images, and Attitudes questions on the CRI give insights into how educational programs and other interventions should be structured and marketed in order to attract participants, and to optimize behavior change from those who participate. The following findings from the CRI should be taken into consideration when developing and marketing CME or other interventions around this issue.

Programs should be built around new developments in the field and emphasize the clinical benefits that will accrue from these developments.

Program marketing should emphasize new information and the opportunity for the

community nephrologist to build new competency for managing the transplant patient.

CN are comfortable with their current practices. In order to motivate them to

attend programs and make changes in their practice, they should be shown evidence that current practices are not acceptable and need to change. Program marketing efforts should emphasize differences in usual practices from best practices.

CN perceive that changing their practices in this area is somewhat complicated

and difficult. Simple and incremental changes should be identified and emphasized, so that CN can begin the process of assuming more responsibility for the transplant patient.

Competencies The issue of transitioning transplant patients incorporates both clinical competencies, i.e. the clinical knowledge and skills of the physician, as well as system barriers that go beyond the control of the physician. By having participants rate their “Present” and their “Desired” level of competency specific areas of need and interest were identified. Useful information can be derived from analyzing the average answers in each category (Present or Desired) for a given competency, as well as by analyzing the “gap” between the two (Present vs. Desired). In general, the ratings to the “Desired” questions were high, indicating an overall high level of motivation for these specific competencies. This may appear to be contrary to the “low motivation” indicated by the attitude questions. However, a more likely interpretation is that, while physicians believe that wholesale changes in their practice are too difficult, they can achieve smaller changes in specific areas, as defined by the competencies. This is consistent with the previous findings that change in this are is not viewed as simple. The smallest gaps (Desired – Present) in the Competency section were related to PCP issues and co-morbidities. This finding is consistent with what we heard from interviews

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and group discussions – that CN already are competent in this area or that CN don’t really want to deal with these particular problems. They may be forced to care for primary medical problems because the patient has no one else to go to, but they feel that their competency in this area is adequate, and as a result they are not motivated to learn or change. Following are the significant perceived needs of the CN and as such, education for CN should be targeted to: (listed in order of highest need)

• assist patients in securing the necessary medications. • assist the patient in dealing with the psychological issues associated with

their transplant. • ensure patient compliance with medications, routine visits, and

laboratory tests. • identify acute rejection in the post-transplant patient (PTP). • differentiate immunosuppression protocols. • ensure effective communications with the transplant center. • identify signs and symptoms of late-graft rejection. • recognize potential drug interactions with immunosuppression regimens. • diagnose infection in the PTP.

The transition of maintenance of care of the post- kidney-transplant patients from transplant centers to community nephrologists has led to a need for optimization of this transition. Like many aspects of medicine, the issue of managing the post-transplant patient is very complex. This study set out to provide a qualitative and quantitative assessment, categorization and elaboration of needs of the community nephrologists. Many of these needs were identified and presented above. The Change Readiness Inventory adds to our understanding of the relative strengths of various forces and attitudes that shape CN approaches to the PTP. Additionally, the CRI helps to quantify the educational needs that have been identified in this qualitative portion of the study. Understanding the forces and barriers at work, allowing prioritization of the educational needs will help to shape interventions and resources best suited to changing physician behavior and ultimately, improve care of the post-transplant patient.

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