- Email: [email protected]
Pediatric heart transplantation-Preparation and education
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
Contents lists available at ScienceDirect
Progress in Pediatric Cardiology journal homepage: www.elsevier.com/locate/ppedcard
Review
Pediatric heart transplantation-Preparation and education Heather J. Bastardi, RN, MSN, CPNP Advanced Cardiac Therapies Team, Boston Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, United States
A R T I C L E I N F O
A B S T R A C T
Keywords: Pediatric heart transplantation Patient and family education Discharge readiness
Pediatric heart transplantation is a complex endeavor with a large amount of knowledge requirements and preparation. Success of the decision making leading up to the transplant and readiness for discharge posttransplant relies on adequate education and preparation [1]. The population is at high risk for medical nonadherence which is directly linked to poor patient outcomes [2]. Discrepancies in patient and family education and preparation lead to unmet care needs, medication errors, increased risk for complications and readmissions. This article will review the importance of preparation, assessment of education needs, and effective transfer of knowledge in pediatric heart transplantation.
1. Introduction Heart transplant is the treatment of choice for patients with end stage heart disease who remain symptomatic despite aggressive medical and surgical therapies without contraindications to the procedure, the complex medication regimen and long term care needs. Preparing pediatric patients and families for heart transplantation is a substantial process. Care is complex and entails administration of multiple medications, intense follow up requirements and ongoing assessment of posttransplant complications. Improved post-transplant outcomes have been linked to patient and parent adherence with the complex requirements [2]. Adherence has been strongly associated with understanding the complexities of care [3]. Heart transplant centers are mandated to appropriately prepare the patient and families with a multidisciplinary approach to meet their individual needs. Both the Center for Medicare and Medicaid Services (CMS) and the United Network for Organ Sharing (UNOS) have outlined multidisciplinary patient and family focused preparation during the three phases of transplant: pre-transplant, transplant and post-transplant. 2. Overview Pediatric heart transplantation began in the mid 1980s with the advancement of anti-rejection therapies, specifically, the introduction of calcineurin inhibitors [4]. The United Network for Organ Sharing reports that more than 500 pediatric heart transplants are performed in the United States on an annual basis. More than 50 individual transplant centers perform pediatric heart transplants in the United States [5]. Outcomes continue to improve with many pediatric patients surviving 20+ years after primary heart transplant. The complications most associated with morbidity and mortality post-transplant include rejection, infection, post-transplant lymphoma, post-transplant coronary artery disease, and the multitude of side effects associated with
the life-long medication regimen [4]. Decreased length of stay, decreased number of readmissions, and early detection of post- transplant complications have been linked to effective parent and patient education and preparation [3,6]. Centers for Medicare and Medicaid Services and the United Network for Organ Sharing have developed minimum standards for family and patient education throughout the pre transplant, transplant and post-transplant phases [7]. Variations in the delivery of education and support vary from center to center. 3. Level of Support, Health Literacy and Education Process Lerret, in her extensive review of discharge readiness in the pediatric population, reports discharge readiness is linked to: 1) current level of patient and family support; 2) status of patient and family health literacy; and 3) the individual education process [6]. Each of these three areas must be assessed on an individual basis and across the continuum of care. With respect to pediatric heart transplantation, this includes the pre-transplant, transplant and post-transplant phases. Recognition of the need for ongoing assessment of patient and family needs must be in place. Success in patient outcomes and parent level of confidence with provision of care is directly linked to assessment and directed interventions in the three areas of level of support, health literacy and the education process [6]. 3.1. Level of Support Each family and patient should be, in effect, treated individually with respect to their support needed in and out of the home [8]. All pediatric transplant centers are currently required to have social work evaluations in all three phases of transplantation. Support is individual and not static, and therefore must be continually assessed throughout the lengthy transplant process. Personal, family, work-life changes, and
https://doi.org/10.1016/j.ppedcard.2018.01.007 Received 22 November 2017; Received in revised form 6 January 2018; Accepted 18 January 2018 1058-9813/ © 2018 Elsevier B.V. All rights reserved.
Please cite this article as: Bastardi, H.J., Progress in Pediatric Cardiology (2018), https://doi.org/10.1016/j.ppedcard.2018.01.007
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
Table 1 Sample caregiver agreement, Boston Children's Hospital.
Caregiver Commitment Agreement
Heart transplant is an aggressive surgical intervenon and is not a cure. In paents who survive transplant surgery, the follow-up is complex and rigorous. Not all families choose to pursue this opon. If heart transplant is not the right choice for your family, we will understand and respect your wishes and will do everything possible to enhance your child’s quality of life. If heart transplant opon is offered and your family chooses to pursue it, you and the enre Heart Transplant muldisciplinary team will work together for the rest of your child’s life. This work starts before transplant to make sure your child is as healthy as possible heading into transplant surgery. Aer transplant, this collaboraon will maximize the survival of your child and the donated heart. Below, please find a list of goals for your family if you choose to pursue heart transplant for your child. These goals will necessitate lifestyle changes which can be challenging. We will work with you to idenfy where you will need assistance and the areas of strength you and your child bring to this process. We have also listed goals for the Heart Transplant team so that you understand ways we may offer support.
Goals for the Family I/we, _______________________________________________ agree to follow all recommendaons before and aer my child’s transplant. This includes: 1. Medical decision-making: It is important to find a balance between quality of life and medical management. I/we understand that there will be some decisions where I/we need to rely on the team’s expert opinion and recommendaon. I/we understand that all efforts will be made by the team to partner with me/us on medical decisions when appropriate. 2. Compliance: I/we understand that I/we will need to be compliant with all medical recommendaons for tesng, procedures, lab work, follow-up appointments and medicaons. I/we will nofy the transplant team of any medical concerns or updates on medical treatments. 3. Restricons: I/we understand that there will be restricons while waing and aer transplant. Restricons include fluid/food guidelines as well as acvity and travel restricons. Individual restricons will be outlined with each paent/family. 4. Finances: All paents must have insurance and prescripon coverage for heart transplant. You may also need to plan for travel, lodging, meals, and other miscellaneous out of pocket expenses incurred while residing in or travelling to the Boston area around the me of transplant and for future follow-up care. 5. Social Support: All paents/families must idenfy 2 individuals (parent, guardian, family member or close friend) as caregivers both before and aer transplant. These “caregivers” should be over the age of 21, have average reading skills, good judgment, be sober, reliable and commied. 6. Psychological Support: a. Paent: As a roune part of heart transplant assessment, all age appropriate paents undergo psychological assessment by Transplant Psychologist. All recommendaons outlined by Transplant Psychologist to be followed. b. Caregiver: Due to the emoonal challenges experienced by family members throughout the duraon of the transplant process (pre, peri and post), we recommend mental health counseling for primary caregivers to enhance their coping skills. (continued on next page)
2
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
Table 1 (continued)
7. Availability: During hospitalizaon I/we understand that as an idenfied caregiver, my/our presence at the bedside and parcipaon in cares is an essenal part of my/our child’s comfort and developmental well-being. 8. I/we understand that for a non-complicated heart transplant, paents residing more than 2 hours from Boston Children’s Hospital will need to remain locally for several weeks aer discharge from the hospital). For paents who reside more than 4 hours away or have a complicated hospital course aer transplant, this me frame may be longer. At least 1 caregiver will need to be with the paent at all mes during this period. The heart transplant team will advise you when it is safe to return home. 9. Additional / specific goals for your family: _______________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ _________________________________
Caregiver responsibilies include: • Meeng with the transplant coordinator before lisng for transplant teaching • Reading the transplant educaon materials aer paent is listed for transplant • Meeng with the transplant coordinator aer transplant for teaching in preparaon for discharge • Providing transportaon for the paent to medical appointments (including heart catheterizaon/biopsy) and lab work • Assisng the paent with their acvies of daily living, cares and medicaons
Goals for the Heart Transplant Team
The Heart Transplant team recognizes that the transplant process is difficult and stressful for families. Once listed, there is no way to predict when a heart will become available. The waing period can create feelings of anxiety, hopelessness and lack of control. Oen, the paent may be hospitalized for extended periods of me waing for a heart which can cause emoonal, physical and financial strain. During this process, the Heart Transplant team will: 1. Connue to provide educaon about the transplant process. 2. Provide ongoing psychosocial support, both in outpaent and inpaent sengs. 3. Provide in house psychological counseling to paent if appropriate while inpaent and refer to local therapist if outpaent. 4. Connue to assess financial needs of family and provide appropriate resources as available. Family’s secon to add comments: ___________________________________________
_____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ _________________________________ (continued on next page)
3
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
Table 1 (continued)
By signing this document, I/we acknowledge our understanding of the “Goals for the Family” and are willing to collaborate with the Heart Transplant team. We understand that meeng these goals is an important step in the heart transplant lisng process.
I/we understand that these goals must connue to be met in order for my child’s lisng status to remain acve. The Heart Transplant team will make reasonable efforts to assist us in reaching and maintaining these goals.
________________________________________________________________________ Signature of Paent (if applicable)
Date
________________________________________________________________________ Signature of Parent or Legal Guardian
Date
________________________________________________________________________ Signature of Parent or Legal Guardian
Date
________________________________________________________________________ Signature of Cardiologist
Date
_______________________________________________________________________ Signature of Transplant Coordinator
Date
________________________________________________________________________ Signature of Transplant Social Worker
Date
financial burden may affect the family and patient's abilities to provide care and establish readiness to assume care responsibilities [9]. Key aspects in determining needed level of support include socioeconomic status, primary language spoken in the home, marital status, number of adults living in the home, and number of children living in the home [10]. Initial and ongoing assessments of potential stressors (i.e. changes in financial positions, marital status, housing, etc.) are imperative for adequate knowledge of the current family needs. Social workers work with the multidisciplinary team to identify current level of support and outline need discrepancies. Some transplant centers have adopted caregiver agreements with families to reinforce the need for a collaborative relationship and highlight the importance of the ongoing need for adherence with the complex medical regimen. The agreement is not meant to be penalizing but to increase awareness and insight for both the families and the transplant staff to the needs and requirements necessary for success across the transplant continuum.
See Table 1 for an example. Centers have adopted caregiver agreements in both the pre and post-transplant phases. 3.2. Health Literacy Health literacy entails the ability to acquire sufficient knowledge about the health information, process the information, and translate it into individualized patient care [11]. Poor health literacy can negatively affect patient safety and result in poor health outcomes [12]. Decreased health literacy can stem from language barriers, lower education level, and neurodevelopmental issues. Patients and families that that do not understand disease specific education can have unmet care needs, increased risk for complications, medication errors, and increased readmission rates [6,13]. Studies have shown that the education process should be done over the course of the relationship with the care providers, not at one moment in time [14]. Furthermore, teaching 4
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi Table 2 Sample post-transplant discharge teaching checklist, from Boston Children's Hospital.
5
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
from several members of the multidisciplinary team [6]. Table 2 is a sample discharge teaching checklist that outlines topics of education to be covered. Checklists include topics reviewed and response to teaching. Discharge readiness is typically directly linked to not only medical appropriateness, but also patient and family education and skill readiness [1]. Both must be obtained for increased success and decreased readmission rates [8]. Education is not static and should be continuously assessed after discharge. Current literature does not reflect best practices for success in this area. Future focus should be directed at ongoing preparedness and transition of education burden to the patient when age appropriate. Most centers have developed their own education materials that encompass the complex medication regimen, the medical follow up requirements, and the most common post-transplant complications. See Table 3 for a sample table of contents for topics outlined in an education book. Other groups have created generalized education to serve as resources. For example, the United Network for Organ Sharing has created generalized patient information guidelines (Partnering with Your Transplant Team: The patients guide to transplantation; link https://optn.transplant.hrsa.gov/media/1536/ partneringwithtransplantteam). Still other groups have tasked experts in the field to compile educational resources (Pediatric Heart Transplant Study Group link: http://www.phtsfoundation.org/index.php/ guidebook). All of these education modalities should be used in combination to fulfill the patient and families education needs. Future needs should be directed at the use of social media and the use of apps.
Table 3 Sample table of contents for post heart transplant education manual, Boston Children's Hospital. Table of contents: Introduction Contact information Heart transplant program contacts Heart transplant program directory Preparing for discharge Coming back to the hospital Post-transplant medications Medication information sheet Medication information schedule Selected issues Rejection Infection Post-transplant lymphoma Post-transplant coronary artery disease Medication and long term side effects Follow-up care at home When to call transplant team Time table: post-transplant Journal
1 1 1 2 2 3 3 4 5
6 7 7 8
in increments that are based on age and literacy ability improves adherence with complex medical regimens [11,14]. Common recommendations report to teach at a 3rd to 5th grade education level [14]. Systems should be in place for review of all education materials to meet standard requirements. Weiss reports that 47% of the population has poor health literacy, and therefore difficulty understanding medical information given to them by health providers [15]. Education can be confusing and overwhelming, which can result in misunderstood information and nonadherence with the intended medical regimen [16]. Incorrect administration of medications or misinterpretation of information can be life threatening in the complex medical care of a heart transplant patient. Episodes of rejection, infection, and even death have been associated with incorrect delivery of medications to a transplant recipient [17]. Patients are commonly discharged on greater than 10 daily medications and have more than one care coordination need (i.e. feeding supplies, visiting nursing) [ 18]. Each transplant center must have a process for the demonstration and acknowledgement of correct education received. Many centers have adopted the modeling of medication administration where the family identifies, dispenses, and administers the appropriate medication on the correct schedule. These centers have this practice outlined as a key step prior to discharge from the transplant admission. Patients, if age appropriate, and families must recite the appropriate medication regimen and demonstrate hands on ability to administer correct medications using appropriate and safe medication administration practices. Some centers use the 24–48 h before discharge as a model time for the family to provide and administer all medical care needs. The time is meant to help the family and patient build confidence, while enabling the practitioners to assess the patient and families ability to provide accurate and safe home care.
4. Conclusion Several factors have been identified to contribute to success in the education and preparation of patients and families living through a heart transplant. Factors include the assessment of the level of support needed and the gaps that would lead to lack of adequate care, identification of individual health literacy, and the individualized, long term education process [6,11]. The current literature reviews the importance of all three areas in the link meeting patient and family needs, decreasing readmission rates, and increasing adherence with the complex medication and medical follow up regimen. However, the literature does not currently address the benefits of adequate preparation prior to listing for heart transplant and the complex medical decision making during the evaluation. Transplant programs are required to provide patient and disease specific education in addition to outlining the complex medication and medical follow up needs, outcomes, and possible complications/risks. Many systems have been developed for the successful preparation for discharge in solid organ transplant recipients during their transplant hospitalization. It would be beneficial to carry this process forward prior to listing for transplant and throughout the transplant continuum. Efforts to improve patient outcomes should include strategies to build patient and family level of support, periodic assessment of health literacy with the provision of ongoing patient, and family directed education. Transplant providers must continually provide ongoing education and support to foster prolonged adherence and success across the continuum of transplant care.
3.3. Education Process
Conflict of Interest
Direct teaching is the primary modality used by transplant centers to educate and prepare patients and families. It is imperative that necessary knowledge is transferred to be successful [11]. Transplant centers are faced with assessing individual education needs and communication skills. Verbal counseling, written information, and educational videos are the primary tools employed to teach patients and their families [14]. Teaching does not end with just the provision of the information, as the assessment of their understanding is also imperative [11]. Many centers utilize teach-back methods, teaching books/sheets, structured education sessions with frequent reviews, and counseling
Heather Bastardi, RN, CPNP, author of the attached article does not have any potential conflicts of interest, including financial or personal relationships, interests, and affiliations relevant to the subject matter of the manuscript that have occurred over the past 2 years, or that are expected in the foreseeable future. References [1] Weiss M, Sawin K, Gralton K, Johnson N, Kilngebell C, Lerret S, et al. Discharge teaching, readiness for discharge, and post discharge outcomes in parents of
6
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
hospitalized children. J Pediatr Nurs 2017;34:58–64. [2] Oliva M, Singh T, Gauvreau K, Vanderpluym C, Bastardi H, Almond C. Impact of medication non-adherence survival after pediatric heart transplantation in the USA. J Heart Lung Transplant 2013;32(9):881–8. [3] Domanski M, Jackson A, Miller A, Jeffrey C. Towards the development of a pediatric discharge planning screening tool. J Child Health Care 2003;7:163–83. [4] Dodd B. Pediatric heart failure and transplantation: where are we in 2013? Curr Opin Pediatr 2013;25:553–60. [5] International Society of Heart Lung Transplant. J Heart Lung Transplant 2017;36(10):1037–79. [6] Lerret S. Discharge readiness: an integrative review focusing on discharge following pediatric heart hospitalization. JSPN 2009;14(4):245–55. [7] Howard R, Cornell D, Schold J. CMS oversight, OPO's and transplant centers and the law of unintended consequences. Clin Transpl 2009;23(6):778–83. [8] Bernstein H, Spino C, Baker A, Slora E, Touloukian C, McCormick M. Postpartum discharge: do varying perceptions of readiness impact health outcomes? Ambul Pediatr 2002;2(5):388–95. [9] Suderman E, Deatrich J, Johnson L, Sawatzky-Dickson D. Action research sets the stage to improve discharge preparation. Pediatr Nurs 2000;26(6):571–6. [10] Lerret S, Weiss M, Stendhal G, Chapman J, Menendez J, Williams L, et al. Pediatric
[11]
[12] [13] [14] [15] [16] [17]
[18]
7
solid organ transplant recipients: transition to home and chronic illness care. 2015;19(1):118–29. Kornburger C, Gibson C, Sadowski S, Maletta K, Klingbeil C. Using “teach-back” to promote a safe transition from hospital to home: an evidenced-based approach to improving discharge process. J Pediatr Nurs 2012;28(3):282–91. Weiss M, Bobay S, Bahr L, Costa R, Hughes D, Holland E. Discharge preparation: a model for hospital discharge transition care. J Nurs Adm 2015;45(12):606–14. Sanders L, Federico S, Klass P, Abrams M, Dreyer B. Literacy and child health: a systematic review. Arch Pediatr Adolesc Med 2009;163:131–40. Burkhart J. Training nurses to be teachers. J Contin Educ Nurs 2008;39:503–10. Weiss B, Johnson N, Malin S, Jerofke T, Lang C, Sherburne E. Readiness for discharge in parents of hospitalized children. J Pediatr Nurs 2008;23:282–95. Paul S. Hospital discharge education for patients with heart failure: what really works and what is the evidence. Crit Care Nurse 2008;28:66. Mehta P, Steinberg E, Kelly S, Buchanan C, Rawlinson A. Medication adherence among adolescent solid-organ transplant recipients: a survey of healthcare providers. Pediatr Transplant 2017;21(7):1–8. Lerret S, Weiss M. How ready are they? Parents of pediatric solid organ transplant recipients and the transition from hospital to home following transplant. Pediatr Transplant 2011;15:606–16.
Contents lists available at ScienceDirect
Progress in Pediatric Cardiology journal homepage: www.elsevier.com/locate/ppedcard
Review
Pediatric heart transplantation-Preparation and education Heather J. Bastardi, RN, MSN, CPNP Advanced Cardiac Therapies Team, Boston Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, United States
A R T I C L E I N F O
A B S T R A C T
Keywords: Pediatric heart transplantation Patient and family education Discharge readiness
Pediatric heart transplantation is a complex endeavor with a large amount of knowledge requirements and preparation. Success of the decision making leading up to the transplant and readiness for discharge posttransplant relies on adequate education and preparation [1]. The population is at high risk for medical nonadherence which is directly linked to poor patient outcomes [2]. Discrepancies in patient and family education and preparation lead to unmet care needs, medication errors, increased risk for complications and readmissions. This article will review the importance of preparation, assessment of education needs, and effective transfer of knowledge in pediatric heart transplantation.
1. Introduction Heart transplant is the treatment of choice for patients with end stage heart disease who remain symptomatic despite aggressive medical and surgical therapies without contraindications to the procedure, the complex medication regimen and long term care needs. Preparing pediatric patients and families for heart transplantation is a substantial process. Care is complex and entails administration of multiple medications, intense follow up requirements and ongoing assessment of posttransplant complications. Improved post-transplant outcomes have been linked to patient and parent adherence with the complex requirements [2]. Adherence has been strongly associated with understanding the complexities of care [3]. Heart transplant centers are mandated to appropriately prepare the patient and families with a multidisciplinary approach to meet their individual needs. Both the Center for Medicare and Medicaid Services (CMS) and the United Network for Organ Sharing (UNOS) have outlined multidisciplinary patient and family focused preparation during the three phases of transplant: pre-transplant, transplant and post-transplant. 2. Overview Pediatric heart transplantation began in the mid 1980s with the advancement of anti-rejection therapies, specifically, the introduction of calcineurin inhibitors [4]. The United Network for Organ Sharing reports that more than 500 pediatric heart transplants are performed in the United States on an annual basis. More than 50 individual transplant centers perform pediatric heart transplants in the United States [5]. Outcomes continue to improve with many pediatric patients surviving 20+ years after primary heart transplant. The complications most associated with morbidity and mortality post-transplant include rejection, infection, post-transplant lymphoma, post-transplant coronary artery disease, and the multitude of side effects associated with
the life-long medication regimen [4]. Decreased length of stay, decreased number of readmissions, and early detection of post- transplant complications have been linked to effective parent and patient education and preparation [3,6]. Centers for Medicare and Medicaid Services and the United Network for Organ Sharing have developed minimum standards for family and patient education throughout the pre transplant, transplant and post-transplant phases [7]. Variations in the delivery of education and support vary from center to center. 3. Level of Support, Health Literacy and Education Process Lerret, in her extensive review of discharge readiness in the pediatric population, reports discharge readiness is linked to: 1) current level of patient and family support; 2) status of patient and family health literacy; and 3) the individual education process [6]. Each of these three areas must be assessed on an individual basis and across the continuum of care. With respect to pediatric heart transplantation, this includes the pre-transplant, transplant and post-transplant phases. Recognition of the need for ongoing assessment of patient and family needs must be in place. Success in patient outcomes and parent level of confidence with provision of care is directly linked to assessment and directed interventions in the three areas of level of support, health literacy and the education process [6]. 3.1. Level of Support Each family and patient should be, in effect, treated individually with respect to their support needed in and out of the home [8]. All pediatric transplant centers are currently required to have social work evaluations in all three phases of transplantation. Support is individual and not static, and therefore must be continually assessed throughout the lengthy transplant process. Personal, family, work-life changes, and
https://doi.org/10.1016/j.ppedcard.2018.01.007 Received 22 November 2017; Received in revised form 6 January 2018; Accepted 18 January 2018 1058-9813/ © 2018 Elsevier B.V. All rights reserved.
Please cite this article as: Bastardi, H.J., Progress in Pediatric Cardiology (2018), https://doi.org/10.1016/j.ppedcard.2018.01.007
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
Table 1 Sample caregiver agreement, Boston Children's Hospital.
Caregiver Commitment Agreement
Heart transplant is an aggressive surgical intervenon and is not a cure. In paents who survive transplant surgery, the follow-up is complex and rigorous. Not all families choose to pursue this opon. If heart transplant is not the right choice for your family, we will understand and respect your wishes and will do everything possible to enhance your child’s quality of life. If heart transplant opon is offered and your family chooses to pursue it, you and the enre Heart Transplant muldisciplinary team will work together for the rest of your child’s life. This work starts before transplant to make sure your child is as healthy as possible heading into transplant surgery. Aer transplant, this collaboraon will maximize the survival of your child and the donated heart. Below, please find a list of goals for your family if you choose to pursue heart transplant for your child. These goals will necessitate lifestyle changes which can be challenging. We will work with you to idenfy where you will need assistance and the areas of strength you and your child bring to this process. We have also listed goals for the Heart Transplant team so that you understand ways we may offer support.
Goals for the Family I/we, _______________________________________________ agree to follow all recommendaons before and aer my child’s transplant. This includes: 1. Medical decision-making: It is important to find a balance between quality of life and medical management. I/we understand that there will be some decisions where I/we need to rely on the team’s expert opinion and recommendaon. I/we understand that all efforts will be made by the team to partner with me/us on medical decisions when appropriate. 2. Compliance: I/we understand that I/we will need to be compliant with all medical recommendaons for tesng, procedures, lab work, follow-up appointments and medicaons. I/we will nofy the transplant team of any medical concerns or updates on medical treatments. 3. Restricons: I/we understand that there will be restricons while waing and aer transplant. Restricons include fluid/food guidelines as well as acvity and travel restricons. Individual restricons will be outlined with each paent/family. 4. Finances: All paents must have insurance and prescripon coverage for heart transplant. You may also need to plan for travel, lodging, meals, and other miscellaneous out of pocket expenses incurred while residing in or travelling to the Boston area around the me of transplant and for future follow-up care. 5. Social Support: All paents/families must idenfy 2 individuals (parent, guardian, family member or close friend) as caregivers both before and aer transplant. These “caregivers” should be over the age of 21, have average reading skills, good judgment, be sober, reliable and commied. 6. Psychological Support: a. Paent: As a roune part of heart transplant assessment, all age appropriate paents undergo psychological assessment by Transplant Psychologist. All recommendaons outlined by Transplant Psychologist to be followed. b. Caregiver: Due to the emoonal challenges experienced by family members throughout the duraon of the transplant process (pre, peri and post), we recommend mental health counseling for primary caregivers to enhance their coping skills. (continued on next page)
2
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
Table 1 (continued)
7. Availability: During hospitalizaon I/we understand that as an idenfied caregiver, my/our presence at the bedside and parcipaon in cares is an essenal part of my/our child’s comfort and developmental well-being. 8. I/we understand that for a non-complicated heart transplant, paents residing more than 2 hours from Boston Children’s Hospital will need to remain locally for several weeks aer discharge from the hospital). For paents who reside more than 4 hours away or have a complicated hospital course aer transplant, this me frame may be longer. At least 1 caregiver will need to be with the paent at all mes during this period. The heart transplant team will advise you when it is safe to return home. 9. Additional / specific goals for your family: _______________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ _________________________________
Caregiver responsibilies include: • Meeng with the transplant coordinator before lisng for transplant teaching • Reading the transplant educaon materials aer paent is listed for transplant • Meeng with the transplant coordinator aer transplant for teaching in preparaon for discharge • Providing transportaon for the paent to medical appointments (including heart catheterizaon/biopsy) and lab work • Assisng the paent with their acvies of daily living, cares and medicaons
Goals for the Heart Transplant Team
The Heart Transplant team recognizes that the transplant process is difficult and stressful for families. Once listed, there is no way to predict when a heart will become available. The waing period can create feelings of anxiety, hopelessness and lack of control. Oen, the paent may be hospitalized for extended periods of me waing for a heart which can cause emoonal, physical and financial strain. During this process, the Heart Transplant team will: 1. Connue to provide educaon about the transplant process. 2. Provide ongoing psychosocial support, both in outpaent and inpaent sengs. 3. Provide in house psychological counseling to paent if appropriate while inpaent and refer to local therapist if outpaent. 4. Connue to assess financial needs of family and provide appropriate resources as available. Family’s secon to add comments: ___________________________________________
_____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ _________________________________ (continued on next page)
3
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
Table 1 (continued)
By signing this document, I/we acknowledge our understanding of the “Goals for the Family” and are willing to collaborate with the Heart Transplant team. We understand that meeng these goals is an important step in the heart transplant lisng process.
I/we understand that these goals must connue to be met in order for my child’s lisng status to remain acve. The Heart Transplant team will make reasonable efforts to assist us in reaching and maintaining these goals.
________________________________________________________________________ Signature of Paent (if applicable)
Date
________________________________________________________________________ Signature of Parent or Legal Guardian
Date
________________________________________________________________________ Signature of Parent or Legal Guardian
Date
________________________________________________________________________ Signature of Cardiologist
Date
_______________________________________________________________________ Signature of Transplant Coordinator
Date
________________________________________________________________________ Signature of Transplant Social Worker
Date
financial burden may affect the family and patient's abilities to provide care and establish readiness to assume care responsibilities [9]. Key aspects in determining needed level of support include socioeconomic status, primary language spoken in the home, marital status, number of adults living in the home, and number of children living in the home [10]. Initial and ongoing assessments of potential stressors (i.e. changes in financial positions, marital status, housing, etc.) are imperative for adequate knowledge of the current family needs. Social workers work with the multidisciplinary team to identify current level of support and outline need discrepancies. Some transplant centers have adopted caregiver agreements with families to reinforce the need for a collaborative relationship and highlight the importance of the ongoing need for adherence with the complex medical regimen. The agreement is not meant to be penalizing but to increase awareness and insight for both the families and the transplant staff to the needs and requirements necessary for success across the transplant continuum.
See Table 1 for an example. Centers have adopted caregiver agreements in both the pre and post-transplant phases. 3.2. Health Literacy Health literacy entails the ability to acquire sufficient knowledge about the health information, process the information, and translate it into individualized patient care [11]. Poor health literacy can negatively affect patient safety and result in poor health outcomes [12]. Decreased health literacy can stem from language barriers, lower education level, and neurodevelopmental issues. Patients and families that that do not understand disease specific education can have unmet care needs, increased risk for complications, medication errors, and increased readmission rates [6,13]. Studies have shown that the education process should be done over the course of the relationship with the care providers, not at one moment in time [14]. Furthermore, teaching 4
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi Table 2 Sample post-transplant discharge teaching checklist, from Boston Children's Hospital.
5
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
from several members of the multidisciplinary team [6]. Table 2 is a sample discharge teaching checklist that outlines topics of education to be covered. Checklists include topics reviewed and response to teaching. Discharge readiness is typically directly linked to not only medical appropriateness, but also patient and family education and skill readiness [1]. Both must be obtained for increased success and decreased readmission rates [8]. Education is not static and should be continuously assessed after discharge. Current literature does not reflect best practices for success in this area. Future focus should be directed at ongoing preparedness and transition of education burden to the patient when age appropriate. Most centers have developed their own education materials that encompass the complex medication regimen, the medical follow up requirements, and the most common post-transplant complications. See Table 3 for a sample table of contents for topics outlined in an education book. Other groups have created generalized education to serve as resources. For example, the United Network for Organ Sharing has created generalized patient information guidelines (Partnering with Your Transplant Team: The patients guide to transplantation; link https://optn.transplant.hrsa.gov/media/1536/ partneringwithtransplantteam). Still other groups have tasked experts in the field to compile educational resources (Pediatric Heart Transplant Study Group link: http://www.phtsfoundation.org/index.php/ guidebook). All of these education modalities should be used in combination to fulfill the patient and families education needs. Future needs should be directed at the use of social media and the use of apps.
Table 3 Sample table of contents for post heart transplant education manual, Boston Children's Hospital. Table of contents: Introduction Contact information Heart transplant program contacts Heart transplant program directory Preparing for discharge Coming back to the hospital Post-transplant medications Medication information sheet Medication information schedule Selected issues Rejection Infection Post-transplant lymphoma Post-transplant coronary artery disease Medication and long term side effects Follow-up care at home When to call transplant team Time table: post-transplant Journal
1 1 1 2 2 3 3 4 5
6 7 7 8
in increments that are based on age and literacy ability improves adherence with complex medical regimens [11,14]. Common recommendations report to teach at a 3rd to 5th grade education level [14]. Systems should be in place for review of all education materials to meet standard requirements. Weiss reports that 47% of the population has poor health literacy, and therefore difficulty understanding medical information given to them by health providers [15]. Education can be confusing and overwhelming, which can result in misunderstood information and nonadherence with the intended medical regimen [16]. Incorrect administration of medications or misinterpretation of information can be life threatening in the complex medical care of a heart transplant patient. Episodes of rejection, infection, and even death have been associated with incorrect delivery of medications to a transplant recipient [17]. Patients are commonly discharged on greater than 10 daily medications and have more than one care coordination need (i.e. feeding supplies, visiting nursing) [ 18]. Each transplant center must have a process for the demonstration and acknowledgement of correct education received. Many centers have adopted the modeling of medication administration where the family identifies, dispenses, and administers the appropriate medication on the correct schedule. These centers have this practice outlined as a key step prior to discharge from the transplant admission. Patients, if age appropriate, and families must recite the appropriate medication regimen and demonstrate hands on ability to administer correct medications using appropriate and safe medication administration practices. Some centers use the 24–48 h before discharge as a model time for the family to provide and administer all medical care needs. The time is meant to help the family and patient build confidence, while enabling the practitioners to assess the patient and families ability to provide accurate and safe home care.
4. Conclusion Several factors have been identified to contribute to success in the education and preparation of patients and families living through a heart transplant. Factors include the assessment of the level of support needed and the gaps that would lead to lack of adequate care, identification of individual health literacy, and the individualized, long term education process [6,11]. The current literature reviews the importance of all three areas in the link meeting patient and family needs, decreasing readmission rates, and increasing adherence with the complex medication and medical follow up regimen. However, the literature does not currently address the benefits of adequate preparation prior to listing for heart transplant and the complex medical decision making during the evaluation. Transplant programs are required to provide patient and disease specific education in addition to outlining the complex medication and medical follow up needs, outcomes, and possible complications/risks. Many systems have been developed for the successful preparation for discharge in solid organ transplant recipients during their transplant hospitalization. It would be beneficial to carry this process forward prior to listing for transplant and throughout the transplant continuum. Efforts to improve patient outcomes should include strategies to build patient and family level of support, periodic assessment of health literacy with the provision of ongoing patient, and family directed education. Transplant providers must continually provide ongoing education and support to foster prolonged adherence and success across the continuum of transplant care.
3.3. Education Process
Conflict of Interest
Direct teaching is the primary modality used by transplant centers to educate and prepare patients and families. It is imperative that necessary knowledge is transferred to be successful [11]. Transplant centers are faced with assessing individual education needs and communication skills. Verbal counseling, written information, and educational videos are the primary tools employed to teach patients and their families [14]. Teaching does not end with just the provision of the information, as the assessment of their understanding is also imperative [11]. Many centers utilize teach-back methods, teaching books/sheets, structured education sessions with frequent reviews, and counseling
Heather Bastardi, RN, CPNP, author of the attached article does not have any potential conflicts of interest, including financial or personal relationships, interests, and affiliations relevant to the subject matter of the manuscript that have occurred over the past 2 years, or that are expected in the foreseeable future. References [1] Weiss M, Sawin K, Gralton K, Johnson N, Kilngebell C, Lerret S, et al. Discharge teaching, readiness for discharge, and post discharge outcomes in parents of
6
Progress in Pediatric Cardiology xxx (xxxx) xxx–xxx
H.J. Bastardi
hospitalized children. J Pediatr Nurs 2017;34:58–64. [2] Oliva M, Singh T, Gauvreau K, Vanderpluym C, Bastardi H, Almond C. Impact of medication non-adherence survival after pediatric heart transplantation in the USA. J Heart Lung Transplant 2013;32(9):881–8. [3] Domanski M, Jackson A, Miller A, Jeffrey C. Towards the development of a pediatric discharge planning screening tool. J Child Health Care 2003;7:163–83. [4] Dodd B. Pediatric heart failure and transplantation: where are we in 2013? Curr Opin Pediatr 2013;25:553–60. [5] International Society of Heart Lung Transplant. J Heart Lung Transplant 2017;36(10):1037–79. [6] Lerret S. Discharge readiness: an integrative review focusing on discharge following pediatric heart hospitalization. JSPN 2009;14(4):245–55. [7] Howard R, Cornell D, Schold J. CMS oversight, OPO's and transplant centers and the law of unintended consequences. Clin Transpl 2009;23(6):778–83. [8] Bernstein H, Spino C, Baker A, Slora E, Touloukian C, McCormick M. Postpartum discharge: do varying perceptions of readiness impact health outcomes? Ambul Pediatr 2002;2(5):388–95. [9] Suderman E, Deatrich J, Johnson L, Sawatzky-Dickson D. Action research sets the stage to improve discharge preparation. Pediatr Nurs 2000;26(6):571–6. [10] Lerret S, Weiss M, Stendhal G, Chapman J, Menendez J, Williams L, et al. Pediatric
[11]
[12] [13] [14] [15] [16] [17]
[18]
7
solid organ transplant recipients: transition to home and chronic illness care. 2015;19(1):118–29. Kornburger C, Gibson C, Sadowski S, Maletta K, Klingbeil C. Using “teach-back” to promote a safe transition from hospital to home: an evidenced-based approach to improving discharge process. J Pediatr Nurs 2012;28(3):282–91. Weiss M, Bobay S, Bahr L, Costa R, Hughes D, Holland E. Discharge preparation: a model for hospital discharge transition care. J Nurs Adm 2015;45(12):606–14. Sanders L, Federico S, Klass P, Abrams M, Dreyer B. Literacy and child health: a systematic review. Arch Pediatr Adolesc Med 2009;163:131–40. Burkhart J. Training nurses to be teachers. J Contin Educ Nurs 2008;39:503–10. Weiss B, Johnson N, Malin S, Jerofke T, Lang C, Sherburne E. Readiness for discharge in parents of hospitalized children. J Pediatr Nurs 2008;23:282–95. Paul S. Hospital discharge education for patients with heart failure: what really works and what is the evidence. Crit Care Nurse 2008;28:66. Mehta P, Steinberg E, Kelly S, Buchanan C, Rawlinson A. Medication adherence among adolescent solid-organ transplant recipients: a survey of healthcare providers. Pediatr Transplant 2017;21(7):1–8. Lerret S, Weiss M. How ready are they? Parents of pediatric solid organ transplant recipients and the transition from hospital to home following transplant. Pediatr Transplant 2011;15:606–16.