HRSA Transplant Center Growth and Management Collaborative: Best Practices Evaluation Report - September 2007

Several of the high-performing transplant centers visited for this study are part of a growing movement across the health care system to organize health care services around the needs of patients and their families, instead of around the needs of institutions. These centers have looked at the transplant process through the patient lens and identified ways to make the transplant process, from referral and evaluation to post-transplant care, easier and less stressful for patients and their families. According to the centers visited, patient-centered care is particularly important in an area like transplantation because the patients may be very ill over a long period of time and they have to absorb and process a lot of new information and, in some cases, make difficult lifestyle changes in order to successfully manage their health. Added to that, securing adequate coverage for transplantation, particularly post-transplant medications, can be challenging and confusing. They see it as part of their responsibility to make the process as easy as possible for patients to navigate the system and manage their care.

Some of the key strategies that these centers employ include providing a high level of education and support throughout the transplant process so that patients have the information they need to make informed decisions about their care and to manage their health. Centers have also made efforts to streamline access to care, make care processes more efficient, and make patients and families feel at home while at the hospital for an extended period of time. As one transplant coordinator stated, “your job is whatever the patient needs whenever it needs to be done.”

Another aspect of patient-centered care is discussed in Action Item 5.4, Provide transplant-specific counseling and coordination to patients and families. Transplant coordinators help patients understand the financial responsibilities involved in transplantation and also provide information to them regarding their insurance coverage and fundraising opportunities. While this could be considered an action item for Strategy/Driver 4, this counseling and education is also an effort that contributes directly to the financial intelligence and success of transplant centers.

Exhibit 6 summarizes the three key change concepts and related actions items that correspond with Strategy/Driver 4: Patient and Family Centered Care.

Exhibit 6:
Strategy/Driver 4: Summary of Key Change Concepts and Action Items

Key Change Concept 4.1: Remove patient access barriers and streamline workflow to provide more efficient care

Organizing around patient-centered care was a strong focus of many transplant centers visited. This includes providing patients with a well-coordinated opportunity to be evaluated as a potential transplant candidate, as well as ensuring that they are given the most streamlined, efficient care possible once they are selected as transplant patients. Streamlining processes reduces unnecessary burden on patients and their families and allows patients to focus on caring for themselves across the continuum of care.

While streamlining care lowers strain on patients, it can also create a more continuous workflow for transplant staff. For example, some transplant centers are designed as a single location for all patient care. Patients travel to the same location for pre-, peri-, and post-transplant care. This allows the patients to become familiar and comfortable with the transplant center and also reduces confusion and strain of traveling to multiple locations. This organization benefits the patient, but also benefits the transplant center. Because of this centralized location, transplant staff (e.g., surgeons, physicians, coordinators, financial representatives, administrators) can work closely to coordinate patient care. This collaborative environment fosters a team approach to care delivery and can facilitate relationship-building for caregivers.

Another form of streamlined care involves 24/7 patient access to providers through a rotating call schedule. Through this set-up, patients receive open access to assistance, transplant staff can work efficiently to share the responsibility of being on-call, and staff burnout can be reduced by a smaller workload.

Action Items

• 4.1a: Make the opportunity to transplantation available to patients by accepting referrals that other centers do not and by safely expanding patient acceptance criteria. Several of the high-performing centers included in this study noted that they often evaluate patients that other centers typically do not. These centers have made an effort to limit the use of rule-out criteria to determine whether patients should be evaluated for transplantation. Instead, they proceed with the evaluation and, whenever possible, work with the patients to address the issues that would exclude them from transplantation. Likewise, these high-performing centers evaluate their patient acceptance criteria on a regular basis to ensure that they are consistent with the current standards of practice. Several centers recognized that safely expanding patient acceptance criteria and accepting all patients for evaluation contributes to their success as high volume or high growth centers. As one transplant physician stated, part of his center’s success has been “choosing patients that other programs will turn down, but doing so rationally and carefully.”
  
  
  
  • Recognizing that its liver and lung transplant programs are the only programs in the State, the University of Washington Medical Center’s liver and lung transplant teams share a sense of responsibility to their community to continually examine and expand their patient acceptance criteria to ensure access is not denied to patients for whom transplantation may be an appropriate form of treatment. In the past, the liver transplant team applied criteria that ruled out certain referrals before they were evaluated, such as smoking and alcoholism. Today, all referrals meet with a physician, and the center works with patients to address these issues so that they can be considered candidates for transplantation.
    
    
    
  • Because of its good outcomes, Duke University Medical Center’s heart program often receives referrals of patients who have been turned away by other centers because they were considered not suitable for transplantation. Even if the patients have been turned away elsewhere, Duke reviews their histories and makes its own determination about the patients’ suitability for transplantation. In some cases, Duke discusses with the patients the possibility of taking a marginal organ that cannot be placed in another recipient if it becomes available. If the patients want to consider this option and are otherwise suitable for transplantation, the center adds them to the list with a notation that they are willing to consider marginal organs. When receiving offers of marginal hearts that would not be appropriate for patients higher on the list, the center does not reject them without considering whether they would be appropriate for one of these patients. The center estimates that this practice has resulted in approximately 10 additional transplant procedures per year (or about 20 percent of the center’s transplants). The center’s providers noted that outcomes for these patients have not been as good as the outcomes for other patients on their list, but they have been comparable to National benchmarks. In addition to making the possibility of transplantation available to more patients, Duke providers and staff believe that this practice has helped the center grow because physicians are more likely to refer their patients to Duke knowing that the center will make every effort to find an organ for them.
    
    
    
• 4.1b: Be available and responsive to patients 24/7. In order to maintain their readiness for transplantation while on the waitlist and successfully manage their post-transplant care, patients must absorb and process a large volume of information about recommended lifestyle changes, treatment plans, medication regimens, and potential complications. Understanding that the “information burden” of transplantation is significant and that there is not the time or opportunity to answer all of the patients’ questions while they are at the hospital, some of the high-performing transplant centers visited have made a commitment to providing 24/7 access to a nurse coordinator or transplant physician. A nurse coordinator at one of the centers visited noted that when patients are able to pick up the phone and call a health care provider who specializes in transplantation at any time of day, potential complications can be caught earlier and unnecessary visits to the emergency room can be avoided.
  
  
  
  • The Stanford heart and kidney transplant programs are committed to being available to their patients whenever they have questions. Stanford's pre-heart transplant coordinators aim to return patient calls within a few hours of receipt while Stanford's kidney program has a post-transplant coordinator on call and accessible to patients at all times. A nurse coordinator in Stanford’s heart transplant program noted that they encourage patients to call with questions because they understand that these discussions with patients when they are outside the clinic environment present some of the best teaching moments and that these dialogues sometimes help the coordinators identify problems of which patients were not even aware. She reported that even when patients call with “silly questions,” they never treat the calls as silly because they do not want to discourage patients from calling when there is a serious concern.
    
    
    
  • The University of Washington Medical Center liver and lung transplant programs are also committed to being accessible to patients 24/7 and have a nurse coordinator on call at all times to answer questions. The programs are also committed to being accessible to referring physicians whenever they have questions about caring for their patients in the community. Transplant physicians and nurse coordinators are on call to answer questions about pre- and post-transplant care. This service helps to develop relationships with local physicians, builds credibility and trust for the transplant center, and also ensures that the needs of the patients are consistently being served.
    
    
    
• 4.1c: Establish satellite clinics in outlying communities where patients can receive pre- and post-transplant care. To enhance access to transplant services for patients that do not live in the immediate area, some transplant centers have established satellite clinics in surrounding areas where patients can go for pre- and post-transplant evaluations and follow-up services. These clinics reduce the travel burden on patients and may even increase their compliance with recommended tests. In some cases, these clinics may also help the transplant centers to expand their base of patient referrals, which can help them grow their programs.
  
  
  
  • California Pacific Medical Center, which serves patients over a large geographic region of Northern California and neighboring states, established a network of six permanent satellite clinics throughout Northern California to provide easier access to pre- and post-transplant services for patients that do not live close to the center’s location in San Francisco. Having clinics closer to home makes it easier for these patients to access services. Each of the satellite clinics is staffed by a full-time local nurse coordinator and is visited frequently by the centers’ transplant nephrologists, social workers, and other staff providers. In fact, at any given time, one of the center’s five transplant nephrologists is on a 3-week rotation visiting the satellite clinics. In addition to the six permanent clinics, the Center sends teams to four other locations in California on a regular basis to see patients. The center’s administrators and physicians believe that these outreach clinics have significantly broadened the center’s referral base and have contributed to its growth in a very competitive environment.
    
    
    
  • The University of California, San Francisco has also developed satellite clinics and works with nearby clinics so that patients can have tests performed there rather than in the city. Allowing patients to go to nearby clinics is particularly helpful immediately following transplantation because patients require a substantial amount of blood work and may not be able to repeatedly travel to and from San Francisco. One transplant physician noted that centers must be sure that they have adequate resources to invest in these clinics because significant investments must be made for the satellite clinics to interact seamlessly with the main center.
    
    
    
• 4.1d: Offer clinic hours for pre- and post-transplant care 5 days a week and provide care after-hours. This action item describes several initiatives transplant centers have taken to provide expanded access to patient care during regular clinic hours and after hours. Some centers extend their normal clinic hours, which are held 5 days a week, to increase the amount of patients they are able to see, and to allow patients to receive more comprehensive care in one visit that they may not receive during shorter clinic hours. Other centers offer after-hours care to provide more convenient scheduling for patients and their families.
  
  
  
  • Mayo Clinic offers clinic hours 5 days a week, which makes it easier for patients to come in at times that are convenient for them and allows for longer visits. As the program grew over the years and the list of post-transplant patients grew longer, it became difficult for the physicians and nurses to accommodate their clinic visits when clinics were limited to designated days. By expanding clinic hours to 5 days a week, they are able to devote at least ½ an hour to each clinic visit and 1 hour for the patients’ first visits.
    
    
    
  • New York-Presbyterian Hospital recently established an outpatient urgent care facility exclusively for transplant patients if they have an urgent issue outside of clinic hours. This facility offers patients an alternative to the emergency room where the attending physicians and other providers will not be as well informed about the unique needs of transplant patients. It also reduces immunosuppressed transplant patients’ exposure to crowded emergency department waiting rooms with patients who may have communicable diseases.
    
    
    
  • New York-Presbyterian Hospital also offers evening and overnight infusion services for patients. Overnight infusion allows the hospital to see more patients during the week and also reduces stress for patients because they can come into New York during off-peak hours and receive infusion at their convenience.
    
    
    
• 4.1e: Rotate transplant physician schedules to ensure there is always a specialist available to answer questions from nurse coordinators and to avoid burnout. One of the challenges for high volume transplant centers is avoiding burnout among their staff and providers. Transplant physicians and nurse coordinators were frequently mentioned as having positions susceptible to burnout because of their primary role in monitoring the health of patients before and after the transplant procedure, seeing patients in clinic, and being available to them to answer questions. California Pacific Medical Center, which describes its kidney transplant program as “nephrologist-driven,” has taken several steps to ensure that its nephrologists are able to have a work-life balance without compromising the quality of patient care. The center employs five transplant nephrologists, which is high in comparison to other centers that have higher volumes. To help the team of nephrologists avoid burnout, the center has established a schedule of alternating 3-week rotations. The four rotations are: inpatient services, outpatient lab reviews/clinic, satellite clinics/community outreach, and administrative time. One of the transplant nephrologists with whom we spoke observed that while each of these rotations can be difficult, the schedule helps the physicians maintain a healthy work-life balance. One transplant physician noted that it is particularly helpful to have the travel schedule condensed into 3 weeks out of every 2 months because the schedule is predictable and there is ample time to recover before heading back out onto the road again. Moreover, this schedule ensures that there is always a transplant physician that is available to nurse coordinators in the clinic and to answer questions after hours, which enhances the quality of patient care.
  
  
  
• 4.1f: Use transplant-specific information technology systems to allow physicians and staff 24/7, off-site access to patient information to allow for continuous care coverage and monitoring. Many centers use transplant-specific information technology systems to help them manage patient information, monitor performance data, and compile and submit reports to regulatory agencies. In addition to helping them streamline their workflow, staff at some of the high-performing transplant centers visited noted that these information technology systems, such as the Organ Transplant Tracking Record and TransChart, help them to provide more patient-centered care. The systems make it easy for providers to access information entered by other providers, reducing the burden on patients to manage their own information or to relay information between providers about their conditions. These systems also allow providers to securely access patient information while off-site, which makes it easier for physicians and surgeons to answer questions about patient care during off-hours and to respond to organ offers.
  
  
  
  • Several of the transplant centers visited, including Clarian Health, the Hospital of the University of Pennsylvania, and California Pacific Medical Center use the Organ Transplant Tracking Record (OTTR) to manage patient information and streamline communications and workflow. OTTR tracks patient medical and financial information, lab results, medications, and progress notes. OTTR is accessible by transplant staff from within the hospital or from remote locations and allows for immediate access to patient information, improved communication among staff, and gives providers the ability to make decisions using real-time data. At Clarian Health, OTTR interfaces with the center’s e-mail software, which facilitates easy communication among providers about patients. Financial coordinators at Clarian use OTTR to monitor patients’ coverage and identify any potential gaps in coverage that the patients may experience. At California Pacific Medical Center, OTTR helps to identify which patients are close to the top of the waitlist for a kidney transplant procedure, which triggers a comprehensive “top of the list” review of the patients’ readiness for transplantation. According to staff at all three of these centers, OTTR has been critical to their growth in the numbers of transplant procedures performed over the past several years. The Hospital of the University of Pennsylvania reports that OTTR has helped the center significantly cut its time from referral to evaluation. Without OTTR, one nurse coordinator reported that the center would not have been able to absorb the growth without things “falling through the cracks.” In fact, an administrator at California Pacific Medical Center attributes OTTR with enabling the center to grow substantially without adding a significant number of personnel.
    
    
    
  • The University of Washington Medical Center developed MAX, a management information system that houses the center’s transplant data. MAX has served as a useful tool for organizing and providing patient care. It is programmed to alert nurse coordinators when patients are due for tests or procedures following standard care protocols. Through MAX, physicians can easily access patient notes and histories from a system that contains medical records. The system has also significantly streamlined workflow, making it easier for nurse coordinators to secure physician approval of prescriptions and other care decisions. In addition to enhancing and streamlining care, MAX has helped the center manage its regulatory reporting requirements. For example, MAX is programmed to automatically compile and submit transplant data according to OPTN requirements and specifications. MAX is also a useful tool for research studies because it provides aggregated patient data. Physicians and nurses conducting studies can create queries to pull out the data that they need for their research. Transplant center administrators also rely on customized reports from MAX in making business decisions. MAX was first developed in 2001-2002 and became fully operational in 2006. The center has a dedicated IT specialist who has been working on the development and maintenance of MAX.
    
    
    
• 4.1g: Integrate the organ transplant program so that physician offices, outpatient clinic rooms, and inpatient beds are in proximity. Among the high-performing centers visited, several cited close proximity of transplant physicians, surgeons, nurses, other providers, as well as financial and administrative staff as one of the critical components of their success. Working in close proximity to each other and to outpatient and inpatient clinic spaces encourages relationship-building and increased communication across the transplant team regarding all aspects of patient care. Several nurse coordinators commented that they find it extremely valuable to be in close proximity to transplant physicians because it makes it easier for them to engage the physicians and to ask questions about patient care. Likewise, transplant financial and contracts staff that are located near the transplant clinical staff report that by sharing the same space, they absorb more information about transplantation and are better able to do their jobs effectively. From the patient perspective, a centralized transplant clinical area reduces stress because it minimizes the extent to which they need to navigate the larger hospital.
  
  
  
  • At the Hospital of the University of Pennsylvania, the liver and kidney transplant staff (e.g., surgeons, hepatologists, nephrologists, nurse coordinators, and financial consultants) are located on the same floor. As one staff member indicated, this design “allows critical systems to be centralized and to work together in sync.” Proximity allows for timely collaboration among staff, including sharing information regarding patient care, coordinating patient evaluations more effectively, and bringing staff together for prompt decision making. The center recognizes the benefits of this infrastructure and plans to use this model for the heart and lung transplant teams.
    
    
    
  • Mayo Clinic has designed its liver program as a single centralized location. Physician offices, outpatient clinic rooms, and inpatient beds are all located on two floors of the same building. This physical integration improves staff workflow by facilitating increased access to patients and colleagues and also encourages interaction and collaboration among staff.
    
    
    
  • Clarian Health staff also noted that close proximity of nurse coordinators and physicians facilitated communication and likely led to faster and better decision making about patient care. At Clarian, the offices for the lung, heart, and kidney transplant coordinators are all located in the same hall, which enables them to communicate frequently. As one nurse coordinator observed, the post-transplant coordinators “bounce ideas off each other” frequently, which they might not do as often if they did not see each other frequently. The nurse coordinators for liver are located in close proximity with the hepatologists, which makes it easier for them to ask questions about patient care as they arise.
    
    
    
  • The University of California, San Francisco has also taken efforts to place staff in a centralized location; inpatient beds for pre- and post-liver transplant patients are co-located, which allows floor nurses to focus on transplant patients and to develop expertise in the field.
    
    
    
• 4.1h: Make the patient evaluation and selection process as easy and efficient as possible from the patient’s perspective. Several of the high-performing centers have made an effort to make the evaluation process as easy as possible for patients. Because the evaluations require multiple appointments and tests involving a large number of hospital staff and providers, several centers reported that historically, it sometimes took several weeks and multiple repeat visits to the hospital for patients to complete the process. This was particularly difficult for patients traveling in from out of town because it required either long stays in local guest houses or hotels or multiple drives to the center. To reduce the burden of completing the evaluation process for these patients, some centers have streamlined the process to reduce the overall length of the process and to minimize the number of trips that patients need to make to the hospital.
  
  
  
  • Mayo Clinic has worked to streamline the patient evaluation process and to make it as efficient as possible. Mayo tries to perform tests that would exclude patients early in the evaluation process to ensure patients do not undergo unnecessary testing if they are not a transplant candidate. The transplant center also has scheduled reserved time slots with pathologists, radiologists, and other diagnosticians so that patients can have all their appointments in 1 day or in consecutive days to reduce the need for repeat visits. This process has reduced wait time for appointments from 45 days to 2-3 days.
    
    
    
  • Hahnemann University Hospital’s kidney transplant program seeks to expedite evaluation scheduling and to reduce the amount of time between referral and selection. Currently, the time from referral to evaluation is 2 weeks. Because patients often come to Hahnemann from a distance, the staff seeks to evaluate a patient in one visit or trip. Initial evaluations consist of a 4-5 hour process. This process can be even shorter if some of the tests have been performed elsewhere. Financial coordinators generally speak with patients pre-evaluation to resolve any financial issues before the evaluation appointment, which also expedites the process.
    
    
    
  • At the Cleveland Clinic, the transplant center has set up a “fast track” with the neurology department so that the transplant staff can bypass the normal appointment scheduling system to schedule patient evaluations with a neurologist. There are two neurologists that the transplant center can call directly to make appointments so that patients may receive an appointment on short notice. The transplant center also ensures that candidates for transplantation are evaluated promptly after referral by hepatologists and pulmonologists. This reduces the amount of time for patient evaluation and assessment from weeks to several days.
    
    
    
• 4.1i: Maintain contact with patients for life: before, during, and after the transplant procedure. This action item stresses the importance of building and maintaining lifelong relationships with transplant patients. Coordinators begin developing relationships with patients when they are evaluated, and they follow patients throughout the entire transplant process. Care models differ by center; some centers have a single coordinator devoted to each individual patient throughout the transplant process. Others assign pre-transplant coordinators and post-transplant coordinators to patients. After transplantation and recovery, coordinators contact patients on a regular basis to ensure patients are doing well and following their care guidelines. Many coordinators interviewed believe that this life-long contact encourages patients to continue following their guidelines, directly contributing to better outcomes.
  
  
  
  • The Mayo Clinic’s liver transplant program truly follows its transplant patients for life. Patients are assigned a pre-transplant coordinator during the initial evaluation process to ensure they have constant access to a provider for any questions or care needs. The pre-transplant coordinator is the patient's primary contact until the transplant surgery, at which time the patient is assigned a post-transplant coordinator. Post-transplant coordinators are devoted to following patients for life and provide long-term management for the whole patient, not just for the patient's transplanted organ. They help patients manage their immunosuppressant regimen and work with their referring doctors to ensure that patients receive the best care possible. To ensure consistency in care across post-transplant coordinators, standardized protocols are used to provide care to patients. Mayo works intently and successfully to have at least one contact a year with each patient. Many of these contacts occur via telephone because Mayo serves a large and rural geographical region, including many international patients.
    
    
    
  • Transplant coordinators at Duke University Medical Center follow the case management model; they are assigned to transplant patients at evaluation and work with them for life. Coordinators are the patient’s constant representative, working together with transplant surgeons, physicians, social workers, and other clinical and administrative staff to provide patient-centered care. Patients build a relationship with their coordinators throughout the transplant process, and the coordinators believe this relationship encourages transplant recipients to remain in contact with the transplant center with any concerns or complications. This contact can directly contribute to Duke’s high patient outcomes and increased patient satisfaction and lead to subsequent outside physician referrals to the transplant center.
    
    
    

  Key Change Concept 4.2: Educate patients and their “families” early and often

While patients are dependent on transplant staff for their medical care, pre- and post-transplant success is also dependent on how well patients and their families are able to manage patient care outside of the hospital. Patients must learn to manage their health by adhering to treatment plans, following dietary guidelines, taking their medication correctly, and knowing when to call the center for help. These can be major lifestyle changes for patients, and they look to the transplant center as a primary source of education.

Transplant centers visited during this study stressed the importance of patient education from the patient’s initial evaluation and for the rest of his/her life. This includes education on the process of transplantation, life after transplantation, medication, dietary guidelines, financial and insurance needs, and when to call a nurse coordinator with any concerns. While much of this information is presented to patients upon their initial visit to the hospital, staff understands that they will need to repeat key messages at multiple times in the process because information can be lost in time. Providing clear, consistent, and constant education during every patient interaction ensures patients and their families understand their roles and responsibilities. (“Family” refers to any person or group of people who are willing to commit time to care for the patient before, during, and after transplantation.)

Action Items

• 4.2a: Provide “drip education” for patients, ensuring they are educated health consumers. In order to avoid overloading their patients with more information than they can absorb and process at once, many of the high-performing centers’ approach to education is to create multiple opportunities for education throughout the transplant process, to focus most on the information the patient needs to know at that point in the process, and to communicate key points repeatedly and in different ways. As a post-transplant nurse at one of the centers put it, every single patient interaction is a teaching opportunity. Another nurse coordinator coined the term “drip education” to describe this approach of providing information in small doses as patients need it.
  
  
  
  • For Stanford’s kidney transplant program, patient education begins even before the evaluation process. Before potential candidates for transplantation are evaluated, they and their families are invited to participate in a group education session that provides them with an overview of the benefits and challenges of organ transplantation and what to expect at every stage of transplantation from the evaluation process to managing life after an organ transplant procedure. These education sessions are held about once a week and are led by a nurse coordinator and a social worker. The sessions used to be offered as 1-day sessions, but have been split into two ½-day sessions, which minimizes “information overload” and gives patients and families time to formulate questions between sessions. The sessions and all of the program’s education materials are offered at the third-grade reading level and in multiple languages. The intent of these sessions is to provide potential candidates for transplantation and their families enough information about the benefits and challenges of organ transplantation so that they can make an informed decision about whether it is right for them before undergoing the evaluation process.
    
    
    
  • Stanford’s heart and kidney transplant programs schedule education sessions for patients with financial coordinators early in the evaluation process to ensure that patients are aware of their benefits, gaps in their insurance coverage, their financial responsibilities, and alternate sources of financing (e.g., fundraising) if they are unable to afford transplantation. This practice helps patients establish and maintain financial readiness for transplantation.
    
    
    
  • The University of Washington Medical Center staff emphasized the importance of providing adequate information to patients before discharge from the hospital after transplant surgery. One of the floor nurses reported that “education begins immediately after transplantation” and continues up until the point of discharge from the hospital. The floor nurses provide patients with a laminated care map that patients can display on their wall. The care map is a protocol of post-transplant care and lists the benchmarks that patients must achieve prior to discharge. The care map was developed for the floor nurses, but the nurses have found that it is helpful for patients to be able to monitor their own progress on the care map and to know what benchmarks they still need to achieve before they can be discharged.
    
    
    
  • After observing a gap in the post-transplant care of liver transplant patients who develop newly-diagnosed diabetes after surgery as a result of corticosteroid use, the University of Washington Medical Center established a diabetes educator position for transplant patients. The center contracted with a clinical nurse specialist and certified diabetes educator who educates patients about the risk of developing diabetes after transplantation and how to manage the disease. The diabetes specialist now works with both the lung and the liver transplant programs. She visits with all the liver and lung post-transplant patients in the ICU to conduct education sessions and communicates regularly with patients who are diagnosed with diabetes. She provides them with her cell phone number if they have questions and helps them to triage emergencies related to diabetes.
    
    
    
  • Clarian provides detailed post-transplant education to patients and their families. Following surgery, all patients receive a manual, which is available on CD-ROM and in Spanish, which includes detailed dietary guidelines, instructions for follow-up care, and post-transplant medication information. In addition, the lung transplant program provides monthly patient-led support groups for post-transplant patients. During these groups, patients help each other cope with post-transplant life (e.g., issues of depression, medication compliance).
    
    
    
• 4.2b: Offer 24/7 telephone access to post-transplant coordinators for all transplanted patients, donors and their families to answer questions about treatment plans and complications. This action item stresses the importance of post-transplant coordinators being accessible to patients, donors, and their families around the clock to answer any questions regarding transplantation, medication, health complications, or any other concerns that may arise. Because of this relationship and access, patients may be more likely to contact their coordinator regarding any health status changes so that coordinators can continue to provide high quality care.
  
  
  
  • The University of Washington Medical Center’s liver program provides MedComm, a telephone support center available 24/7 that is staffed by a hepatologist. This center provides transplant-specific information for families, patients, and the community. It is also a resource for physicians to call in and request patient records if needed.
    
    
    
  • As described under Action Item 4.1b, Stanford’s kidney transplant team always has a nurse coordinator on-call to take patient calls after hours.
    
    
    
• 4.2c: Provide on-line information for transplant patients and their “families”, offering information in different languages and modalities to ensure information is accessible for all education levels. Several transplant centers provide on-line education for patients that is accessible, easy to understand, and empowers patients and their families. One physician said that his clinic aims to “start where the patient is.” They understand that many patients have researched hospitals on-line and that many of them have questions once they are waitlisted or transplanted. Providing information on-line allows patients facilitated access to answers and the opportunity to know what the transplant process entails.
  
  
  
  • The Children’s Hospital of Philadelphia recently developed a Web site for patients and their families that provides information in several modalities (e.g., videos, cartoons, fact sheets, articles, chat rooms). The site allows users at all education levels access to useful information regarding the process of transplantation and provides a forum for patients to ask physicians questions and to connect with others to discuss any concerns.
    
    
    
  • Clarian Health provides post-transplant patients with booklets and CDs with information about diet, medication, and who to call if there are any complications. Theses materials are available in multiple languages to ensure that patients are able to read and understand care information post-surgery.

  
  Key Change Concept 4.3: Don’t forget the “family”: Involve and support “families” throughout the entire transplant process

Supporting the families of transplant patients was a common theme across the transplant centers visited. Recognizing that transplant procedures are stressful not only for the patients, but also for their families, many of these centers have made it a goal to be as family-friendly as possible. One of their primary goals is to make it easier for families to support and be with the patients throughout the transplant process by providing comfortable spaces for families while their loved ones are in the hospital and providing support groups and other services to ease the emotional strain. Even financial coordinators can play an important role in supporting the family. As described under Action Item 5.4b, at Stanford, financial coordinators help transplant patients find and secure the best health insurance coverage for themselves, as well as their families. By supporting the patients’ primary caregivers in this way, the transplant centers are supporting better overall care for patients.

Action Items

• 4.3a: Create a “family”-friendly environment. This action item addresses the efforts of hospitals to make the families of transplant patients feel at home while at the hospital. Since family members can be at transplant centers for an extended period of time, it is important for hospitals to provide facilities for respite from the stress of the situation. This is an extremely important issue in children’s hospitals, where families are generally with the patients around the clock.
  
  
  
  • The Children’s Hospital of Philadelphia organizes care around the needs of patients and their families, including emotional, educational, psychological, and developmental needs. The hospital provides on-site playrooms, classrooms, a library, free laundry facilities, and a family room. In addition, patient rooms are larger than at other facilities to allow parents and families to stay overnight in their children’s hospital room.
    
    
    
  • At the Mayo Clinic’s hospitality house for the families of transplant patients, it has a library for families to relax and read, and often receives free tickets to local attractions to help those staying at the house feel at home. The house has many common areas for guests to be together and provides a pool table, outdoor grills, televisions, and a piano to create a family-like atmosphere.
    
    
    
• 4.3b: Provide affordable, on-site housing to pre- and post-transplant patients. Transplant recipients and their families can be on-site for a significant amount of time from evaluation to post-transplant, especially if the recipient must relocate nearer to the center. Housing during this time can be expensive, especially if patients and their families are not in a position to work while awaiting an organ. To help families manage the expenses, some transplant centers provide affordable, on-site housing for patients and families. Some centers are even able to provide free housing for families in difficult financial situations, either through donations or hospital funding.
  
  
  
  • The Mayo Clinic’s Gift of Life House provides rooms at minimal or no cost to families. The hospitality house is supported by the Clinic, but also receives public donations that allow outside donors to sponsor nights for those who are unable to afford housing.
    
    
    
  • To accommodate patients from out of town, Stanford offers affordable local housing to post-transplant patients so that they can remain close by and receive necessary medical care. This allows patients that may not be able to afford housing in the expensive area the ability to stay close to Stanford during their recovery period.
    
    
    
• 4.3c: “Normalize” transplant care by making patients feel at home, even when they are in the most abnormal of circumstances. Transplant patients often undergo long stays in the hospital, which can be stressful and disruptive to the patients, as well as their families. Several of the transplant centers visited try to make these stays not only as comfortable as possible for the patients, but also as “normal” and as much like home as possible. As one transplant physician stated, this is part of how his center “puts the patient in the middle.”
  
  
  
  • The Children’s Hospital of Philadelphia attempts to create a “normal” atmosphere for children under transplant care. The children are expected to attend classes at the on-site school and to complete evening homework assignments, health permitting. The children are also given Internet access in their rooms to allow for communication with friends and other transplant patients.
    
    
    
  • The Mayo Clinic’s Gift of Life House is designed to feel like home to families of transplant patients. The 48 guest rooms each have a private bath, and the facility has three kitchens, four dining rooms, and five day rooms for families to relax. This set-up allows families to have the conveniences of home while at the clinic, making their stay feel more normal than an extended stay in a hotel. It also allows families of transplant patients to come together for services, such as support groups and counseling, and to work together and deal with the process of transplantation. The house sponsors musical events, fundraising opportunities, and dinners to help bring these families together.