Education for Transplant Patients and Caregivers
Debra Bernardina, RN, BSN, CCTC
Darla K. Phillips, RN, MSN, CCTC
I. INTRODUCTIONA. Patient education is a key element of transplant nursing.1
B. Patient education provides the foundation that enables patients to better achieve optimal health before and after organ transplantation.
C. The role of the transplant coordinator is to design patient education to meet the learning needs of the patient, taking into consideration the patient’s developmental level, readiness to learn, cultural values, and beliefs.1
D. Caregivers play a vital role in the care of the transplant patient and must be engaged in patient education throughout the transplant continuum.
II. LEARNING THEORY MODELS FOR TRANSPLANTATIONA. Educational models
Guide the interdisciplinary transplant team to plan, design, and implement appropriate educational interventions based on the patient’s individual needs.
Support the nursing process in determining if the patient is ready to move to the next phase of learning.
B. Health belief model (HBM)
The HBM is one educational model to explain, predict, and influence patient health-related behavior.
This model
States that patients will not act to improve health unless they2
Believe they are susceptible to the poor health condition in question.
Believe the condition, if contracted, would seriously affect their life.
Believe the benefits of actions to improve health outweigh the barriers.
Possess confidence that they can perform the action.
Identifies motivation for adherence by examining six aspects related to health care decisions to modify behavior2,3:
Patient’s perception of severity of illness
Patient’s perception of illness susceptibility and its consequences
Value of treatment benefits including a cost/benefit analysis
Barriers to treatment
Physical and emotional cost of treatment
External influence that stimulates action toward treatment of illness
Targets missing information to ultimately motivate the patient for change to improve health.
III. LEARNING NEEDSA. Learning needs in each phase of the transplant continuum may differ as patient’s and caregiver’s previous experiences, learning needs, and changes in health are incorporated into their current perceptions and understanding of the patient’s overall health condition. Per the Centers for Medicare and Medicaid, the transplant phases of care are
Pretransplant phase: extends from evaluating the patient and placing the patient on the transplant program’s waiting list to the preoperative preparation
Transplant phase: extends from the preoperative preparation until the patient is awake and alert following surgery
Discharge phase: extends from when the patient is awake and alert following surgery through posttransplant clinical management and follow-up.4
B. The educational content of the each phase is dependent upon:
The patient’s stage of and adjustment to illness.5
Educational strategies that were effective for a previous stage of the disease process may not be effective for the current stage.5
Acute organ failure may limit the time available to teach the patient or caregiver and the unknown or unpredictable course of the disease process is stressful for patients and caregivers.
A recently diagnosed patient may not be able to fully comprehend the effect and implications of end-stage organ disease, whereas a patient who has had end-stage organ disease since childhood may have anticipated transplant in his or her future.
The organ to be transplanted.
Each organ has unique indications, surgical procedures, outcomes, and complications.
Requirements established by the transplant center.
Each transplant center defines eligibility criteria, including behavioral expectations.
In order to meet regulatory requirements, all patients must be informed of specific aspects of transplantation (see Table 3-1).
Patient and caregiver readiness to learn
Personal perceptions, experiences, and motivations impact readiness to learn.
IV. ASSESSMENT OF READINESS TO LEARNA. Motivation to learn
Determine patient’s expectation for improving health
Identify patient’s motivation for improving health
Focus on the patient’s strengths and recognize accomplishments
B. Learning style: Ask patients:
How they like to learn
To identify and describe past learning experiences that were positive
To identify and describe past learning experiences that were negative
C. Barriers to learning
Insufficient time to teach or learn
Cognitive dysfunction that may be due to5
Effects of medications
Effects of disease process
Intellectual ability
Physical disability, for example:
Hearing loss
Visual changes or loss
Lack of dexterity to perform tasks
Fatigue or pain
Anxiety
Cultural factors related to6
Perception of illness
Language differences
Religious beliefs
Social order of the family
Communication behaviors
Expression of pain
Folk health beliefs
Low-health literacy
Health literacy is the ability to read, comprehend, and use medical information to make decisions.7
Commonly associated with lower-socioeconomic levels.8
Disruptive environment
V. STRATEGIES FOR EFFECTIVE PATIENT EDUCATIONA. Provide environment conducive to learning
Create non-threatening, respectful, and psychologically safe environment in which patients and caregivers can
Communicate openly and ask questions about complex and personal health care issues.
Gain confidence as they learn information and try new skills.
Encourage active participation on the part of patients and caregivers.
Reinforce education through evaluation of the patient’s learning. This can be accomplished with written or verbal questions or through discussions.
Acknowledge the large amount of information to learn; reassure patients and caregivers that learning occurs over time.
Recognize and be sensitive to the patients’ right to choose treatment options that are best for them.5
Advantages include, but are not limited to, the following:
Educates those individuals who will be providing care to the patient throughout the transplant continuum.
Allows patient and caregiver to mutually prepare for evaluation and formulate questions.7
Enables caregivers to ask questions the patient may not think of.
C. Prior to the first transplant appointment:
Provide educational information for the patient and caregiver.
Instruct patient and caregiver to bring these materials to the evaluation conference.
D. Establish a buddy system.
Reduces anxiety by allowing a patient and caregiver to speak with someone who has experienced the transplant evaluation process10
E. Use a structured approach to patient teaching.
Establish day-to-day learning expectations.
This has been shown to increase engagement on the part of patients and caregivers and between nurses and patients.9
Increase consistency of information delivered to patients through the use of a checklist of topics to discuss with patients and caregivers.11
Encourage patients to evaluate educational sessions after participating in structured classes.12
F. Relate information to familiar aspects of patient’s daily life. For example:
Describe lifting restrictions by comparing 5 pounds to a familiar object such as a gallon of milk
Provide a visual illustration when explaining medical details to patients when possible. For example, when describing cirrhosis, compare the smooth surface of an apple to a healthy liver and the rough, bumpy surface of an orange to a cirrhotic liver.
G. Adjust teaching methods to accommodate for learning style, and health literacy3
Focus on core skills for success.
Use chronological or step-by-step timeline.
Provide a small amount of information at a time.
Emphasize the most important topics by placing them at the beginning or end of an educational session.
Limit medical terminology and explain unfamiliar concepts.8
Have patient restate information taught (teach back).
H. Engage all members of the interdisciplinary team9
Patient education is an important component of the role of each member of the interdisciplinary team.
The educational plan should provide time for patients and caregivers to meet each member of the team.
VI. STYLES AND FORMATS FOR EDUCATIONAL SESSIONSA. One-to-one teaching format
Advantages
B. Verbal information
Easily provided during any encounter.
Least preferred in a group setting.13
C. Written information2
Provide material that is at the fifth to eighth grade reading level.
Organize key messages so they are easy to find.
Include pictures and words that create imagery and enhance retention of material.
Develop content to be easily transferred to other formats including the Internet.10
Advantage: Provides opportunity to reinforce verbal instructions.
D. DVD/video
Second most preferred teaching format, pretransplant and transplant phase
DVDs: Most preferred teaching format in posttransplant phase13
Advantages:
Patient determines time for learning.
May be distributed in any phase of care.
Allows patients to review and re-learn content relevant to their interest.
Serves as a resource for caregivers who could not attend clinic sessions.
E. Group class
Least preferred teaching format in posttransplant phase.13
Advantage: patients may learn from experience of others.
Disadvantage: some patients may not want to share experiences in a forum with other patients.
Offer such patients alternate learning environments.
F. Demonstration
Advantage: Provides patients and caregiver guided practice experience with equipment or skills required for home care.
As applicable, plan teaching so that there are at least three nurse-supervised practice sessions.
G. Telephone or in-person follow-up after appointments7
Advantages:
Provides opportunity to
Summarize the plan of care
Reinforce learning specific to patient’s current health or situation
Reinforce patient’s understanding of the next steps he or she is responsible for in the plan of care
Allows patients’ time to reflect on their recent appointment and identify additional questions
H. Internet resources14
Advantages:
May be included as a reference to supplement written materials provided to patients.
May be accessed independently by the patient or caregiver for information on demand.
Patient education material on a transplant center Internet site may be less expensive for transplant centers to maintain.
Disadvantage: Must be updated more frequently than other formats
Instruct patients to review the website sponsor:
Government, non-profit, or commercial sources have different missions, purposes, goals, and intended audiences.
I. Summary
No single intervention or strategy is a guarantee of successful or satisfactory educational outcomes for patients or caregivers.15
The combination of a DVD format with in-person instruction is very beneficial for learning.7
Multiple content formats are important to meet the needs of all learners and caregivers.10
Learners retain:
10% of what they read
20% of what they hear
30% of what they see
50% of what they see and hear
70% of what they see, hear, and say and
90% of what they say and do16
VII. EDUCATION ACROSS THE TRANSPLANT CONTINUUMA. Pretransplant phase (Table 3-1)
Education begins at the time of the referral.
Phone interviews provide an opportunity for education prior to the patient’s arrival.
Materials may be sent prior to the evaluation to prepare the patient and caregivers for the evaluation process.
Key considerations for education during the pretransplant phase
Advise patients to maintain a journal of questions between clinic visits. The journal also may be used to record and monitor physiologic trends.
A recent study of lung transplant patients noted that approximately 50% of candidates are focused on getting listed and topics pertinent to the pretransplant phase and 72% of candidates were interested in how to sustain their transplant.10 Many patients reported feeling overwhelmed with too much information (pretransplant, transplant, posttransplant education all given in one setting) at one time and preferred learning about self-care pertinent to each stage of the transplant process that they are currently in.
When assessing a patient’s knowledge or understanding of a particular topic, use open-ended interviewing techniques rather than questions that can be answered with a “Yes” or “No.”
Initial assessment
Patient’s understanding of the illness
Tell me why your doctor referred you to the transplant center.
Tell me about your organ disease or your health problems.
Tell me what caused your organ disease.
Tell me about the medicines you take and why you take them.
Patient’s knowledge about transplant process
What have you already learned about transplantation?
Tell me about someone you know who has had a transplant.
Tell me about any research you have done, including using the Internet.
Patient’s quality of life10
How would you describe your quality of life today?
Describe how transplantation would affect your quality of life.
What goals would you like to achieve following transplantation?
Informed consent4
Transplant programs must have policies and procedures that delineate
Who is responsible for discussing the informed consent process with the patient
Where discussions concerning the informed consent are documented in the medical record
The methods used by the program to ensure and document patient understanding
When the discussion will take place
Transplant centers must implement written transplant patient informed consent policies that inform each patient of
The evaluation process
The surgical procedure
Alternative treatments
Potential medical or psychosocial risks
National and transplant center-specific outcomes17
Organ donor risk factors that could affect the success of the graft or the health of the patient
His or her right to refuse transplantation
Medicare Part B coverage for immunosuppressive medications (see Table 3-1)
As part of the evaluation process, transplant programs must inform and provide each patient it evaluates with information and written materials explaining all of the following options18:
Listing at multiple transplant hospitals
Transferring primary waiting time
Transferring their care to a different transplant hospital without losing accrued waiting time.
Each transplant program must document that it fulfilled these requirements and maintain this documentation.18
Per Appendix B of UNOS bylaws, transplant programs must provide patients a written summary of the program coverage plan. This is given to the patient at the time of listing and with any changes in the program or personnel.19
UNOS requires that all transplant programs have transplant surgeon(s) and physician(s) available 365 days a year, 24 hours a day, and 7 days a week for program coverage. Any deviation must be approved by the OPTN/UNOS Membership and Professional Standards Committee (MPSC).
A patient or family member may contact UNOS about organ allocation and transplant data at any time.
Transplant evaluation process
Purpose of the evaluation
To assess health and to determine if transplantation is the optimal treatment for the patient’s disease
To identify physical, psychosocial, and financial barriers to successful transplantation
Consultation by and role of interdisciplinary team members
Medical physician
Directs the medical management of disease process and determines medical suitability for transplantation
TABLE 3-1 Education Topics for Pre-transplant Patients and Caregivers
Subject
Required Content
The evaluation process
Results of physical examination, labs, and diagnostic testing
Patient selection criteria and suitability for transplant
Relevance of psychosocial issues to transplant success
Financial responsibilities for transplant
Requirement to follow a strict medical regimen
Outcome of the evaluation
The surgical procedure
Discussion should occur:
– On several occasions prior to the transplant surgery
– Prior to placement of the patient on the waiting list
Detailed discussion of surgical procedure
Anesthesia risk
Risk related to the use of blood or blood products
Other potential risks
Expected postsurgical course
Benefits and risk of transplant surgery relative to other alternatives
Alternative treatment to transplant
Options for alternative treatment
Potential medical risks of transplantation
Wound infection
Pneumonia
Blood clot formation
Organ rejection, failure, or retransplant
Lifetime immunosuppression therapy
Arrhythmias and cardiovascular collapse
Multiorgan failure
Death
Potential psychosocial risk of transplantation
Depression
Posttraumatic stress disorder
Generalized anxiety
Anxiety regarding dependence on others
Feelings of guilt
Future health problems may not be covered by insurer
Alternative financial resources
Future attempt to obtain medical, life, or disability may be jeopardized
National and transplant center-specific outcomes from most recent SRTR center-specific report.
Discussions should occur prior to date of placement on the waiting list
Transplant programs should communicate any updated information to patients when follow-up discussions occur prior to the transplant surgery
Expected 1-year patient and graft survival rates
Observed 1-year patient and graft survival rates
How these rates compare to national averages
Whether the latest reported rates in the SRTR center-specific report comply with Medicare’s outcome requirements
If center does not meet outcomes, Medicare B will not pay for immunosuppression medications.
Provided website www.srtr.org and https://optn.transplant.hrsa.gov
Organ donor risk factors that could affect the success of the graft or the health of the patient
Possibility of graft failure and/or other health risks related to the health status of the organ donor, including:
Medical and social history and age of donor
Condition of the organ(s)
Risk of disease transmission including:
– Human immunodeficiency virus
– Hepatitis B virus and hepatitis C virus
– Cancer
– Malaria
Disease may not be detectable at time of donor recovery
Note: After an organ offer is made for a patient, the transplant program must discuss with the patient the possible risks associated with transplantation of that specific organ. The discussion of risks should include any issues that could affect the success of the organ transplant (the condition of the organ) and any issues that could potentially place the health of the patient at risk (e.g., known increased-risk behaviors in the donor’s background)
Right to refuse transplantation
Advise patient of right to withdraw consent for transplant or that he or she understands this right
Medicare B coverage of immunosuppressive drugs
Transplant must be performed at a Medicare-approved facility for Medicare B to pay for immunosuppressive medications
United Network for Organ Sharing (UNOS)
Multiple listing and transfer of time between transplant centers
Right to be listed at more than one transplant center and the ability to transfer accumulated wait time between transplant centers
Program coverage plan
Coverage plan for medical and surgical provider
Increased risk donor
Advise patient at time of organ offer of increased risk donor
Other Relevant Topics
Role of the interdisciplinary team members
Information for how to talk to others about living donation
Transplant surgeon
Determines if transplantation is the best option based on medical evaluation, surgical risks, and potential complications
Transplant coordinator
Provides education about evaluation process, listing for transplant, and patient responsibilities before and after transplant
Synthesizes information from interdisciplinary team members and physical assessments for presentation at selection committee meeting
Licensed social worker
Evaluates patient’s social support system, ability to cope with the stress of transplantation and potential for adhering to pre- and posttransplant medical regimen.
Identifies resources for patients and caregivers to promote healthy adjustment to illness and future recovery
Registered dietitian
Assesses nutritional status based on medical information
May provide nutritional education to manage disease complications, optimize weight, and enhance overall nutritional status
Financial coordinator
Reviews transplant benefits provided by private and/or public insurers
Discusses costs associated with transplantation, including medications required after transplantation
Identifies financial responsibilities for the patient for costs not covered by insurance
In concert with social worker, provides information regarding fundraising options or access to insurance or disability programs
Transplant pharmacist
Reviews patient medications, makes recommendation to minimize drug-drug and/or food-drug interactions, and optimizes ongoing medical therapy
In concert with other members of the interdisciplinary team, educates patients regarding posttransplant medications
Other medical consultations may be required based on recommendations from transplant team members, such as
Psychologist
Anesthesiologist
Infectious disease specialist
Cardiologist
Diagnostic testing
Transplant programs define organ-specific protocols for diagnostic studies to validate end-organ disease and determine the overall health status of a patient to safely undergo organ transplantation.
May identify previously unknown disease or physiologic states.
Age- and gender-specific health maintenance testing must be current with national guidelines for disease prevention and detection and may be completed at the transplant center or by a local care provider.
Mammogram
Papanicolaou test
Bone densitometry
Colonoscopy
Skin assessment
Assessment of dentition
Examples of common diagnostic tests performed during a transplant evaluation include
Radiologic imaging
Chest radiograph
Computed tomography (CT) scan
Magnetic resonance imaging (MRI)
Bone densitometry
Cardiac studies and imaging
Electrocardiogram
Echocardiogram
Cardiac stress testing
Cardiac MRI
CT angiography
Right and/or left cardiac catheterization
Pulmonary testing
Pulmonary function tests
Bronchoscopy
Arterial blood gas
6-Minute walk test
Ventilation-perfusion (V-Q) scan
Gastrointestinal (GI) studies
Esophagogastroduodenoscopy (EGD)
Colonoscopy
Swallow assessment
GI motility studies
pH manometry
Laboratory assessment
Complete blood count.
Comprehensive metabolic panel.
Coagulation profile.
Viral blood studies to determine previous exposures as well as current immunity.
Disease screening studies to confirm or eliminate disease. Examples include prostate specific antigen, alpha-fetoprotein, alpha-1 antitrypsin levels, copper, hemoglobin A1C, brain natriuretic peptide, creatine kinase.
Biopsies—performed based on patient’s history and physical examination to
Confirm presence or etiology of disease.
Determine if abnormalities are malignant (a potential contraindication to transplantation).
Risks associated with transplantation
Death
On the waiting list
During the transplant surgery
Following transplantation
Organ rejection
The immune system recognizes the transplant organ as “foreign” and causes rejection.
Rejection can occur at any time after implantation of the organ(s).
Need for lifetime immunosuppression.
Organ failure
Primary nonfunction may require immediate relisting and retransplantation.
Delayed graft function may require supportive care and can increase length of the transplant hospital stay.
Retransplantation
May be indicated in cases of primary graft dysfunction, severe allograft dysfunction, advanced chronic rejection, vasculopathy, infection or return of end stage disease that is not amenable to medical or surgical therapies.20,21,22,23
Every transplant program determines indications for retransplantation and evaluates each candidate on a case-by-case basis. See your program criteria for more information.
Infection
Risk is higher due to immunosuppressed state after transplantation.
Risk of donor-transmitted disease.
Unknown disease of donor when organ was recovered.
Detection depends on
Specific tests done by the Organ Procurement Organization (OPO) coordinator during the donor evaluation process.
Viral incubation period: Early in the disease process, some viral diseases may not be detectable in the donor’s blood at the time of the donor evaluation.
Advanced nucleic acid testing may reduce risk of disease transmission by detecting early-stage infections during the “window period” before antibody seroconversion is documented.24
Diseases that may be undetected at the time of the donor evaluation include, but are not limited to24,25,26
Human immunodeficiency virus (HIV)
Hepatitis B or C
Malignancy (including melanoma)
Gonorrhea
Syphilis
Trichomonas
Chlamydia
Rabies
Potential sites of postoperative infection:
Wound
Blood stream
Lungs
Bladder
Chest or abdominal cavity
Cardiovascular complications
Stroke
Blood clots
Prevention may require use of sequential compression devices.
Sequelae can affect heart, lungs, and brain.
Patients undergoing general anesthesia are at risk for complications such as myocardial infarction, dysrhythmias, and cardiac collapse.
Medication side effects
Both immunosuppressive and antimicrobial agents have known side effects that the transplant team monitors closely.
Patients are educated about common side effects:
Hyperglycemia
Hypertension
Kidney dysfunction
Digestive problems
Headaches
Tremors
Nerve damage
Weight gain
The transplant team may change medications based on the patient’s report of side effects and monitoring of lab values.
General surgical risks associated with any type of surgery
Anesthesia
Nerve damage (temporary or permanent)
Bleeding
May require a return to the operating room to control
May require the use of blood and/or blood products
Psychosocial risks (see Table 3-1)
Selection criteria and evaluation outcome
Information from the physical, psychosocial, and financial evaluations is reviewed by interdisciplinary transplant team to determine if the patient meets established medical and psychosocial eligibility criteria for transplantation.
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