Patient Mentorship Program in the Heart Transplant Clinic
Laura Carroll (l) and Josie Mackey (r)
Heart transplant (HT) and Ventricular Assist Device (VAD) implantation is a life-changing event for patients with acute heart failure (AHF). The process by which patients are assessed and selected for heart transplantation or VAD can be a difficult journey. Patients undergo intensive diagnostics and assessments by the multidisciplinary team. Patients within the Heart Transplant Program (HTP) at St. Paul’s Hospital (SPH) have expressed, through various modes of feedback, that they would value peer support to help manage these life-changing circumstances.
Currently, there is no formal peer-mentorship program at SPH for patients in the HTP, resulting in only informal connections being coordinated by clinic nurses. Clinicians working with this population at SPH echo the need for a structured and sustainable peer-mentorship program where both peer mentors and mentees are well supported in their respective roles.
The focus of this study is to determine what a peer-mentorship program for HT and VAD patients would look like when developed with patient involvement. The team will examine, with their patient partners, how such a program will look in terms of structure, content, and process. The overall aim of this study is to seek information regarding how best to develop a peer-mentorship program which will in turn improve patient’s health outcomes and quality of life. The hope is that if patients are the central voice in assembling a program, it will remove the paternalistic biases that clinicians may have when determining what would work best for the patient.
Principle investigators: Josie Mackey and Laura Carroll
Mentor: Wynne Chiu
Co-investigators: Erica Johansson, Kim Brownjohn, Kerry Ahn Uy and Katrien Moore
Patient Partners: Naomi Lee, Marc Bains, Jillianne Code and Kristi Coldwell
The safety and efficacy of sotrovimab in kidney post transplant patients with COVID‐19: a single centre experience
Patients who receive a kidney transplant need to take lifelong medications to suppress their immune system. Even when fully vaccinated, this puts them at high risk of severe disease and death from COVID-19. New treatment options have become available in BC. One of the first treatments available was a monoclonal antibody treatment called sotrovimab. Sotrovimab was used to treat mild to moderate COVID-19 infection in high-risk patients, such as transplant recipients, to decrease the progression to severe disease. There is limited evidence on COVID-19 and treatment options in transplant patients. Anecdotally, the post-transplant kidney transplant program at St. Paul’s Hospital has seen better outcomes in patients who received sotrovimab.
Unfortunately, new strains of COVID-19 have shown resistance to sotrovimab. As a result, this treatment is no longer in use. Despite this, assessing the efficacy of sotrovimab in kidney transplant recipients will provide important data on the risk of COVID-19 in this population and highlight the need for an effective treatment. The team aims to conduct a retrospective chart review to compare the rates of hospitalization, ICU admission and death in kidney transplant patients followed by the St. Paul’s posttransplant clinic who got sotrovimab versus those that received no treatment.
Principle investigator: Erin Waters
Mentor: Wayne Fritz
Co-investigators: Bita Bateni and Odette Bodman
Patient Partners: Alexis Mackay‐Dunn
Vancouver Coastal Health
Frequency of Swallowing and Voice Dysfunction Following Double Lung Transplant
Being able to swallow and produce voice are actions that we complete constantly throughout the day. Swallowing and voice dysfunction following double lung transplant are quite common and carry risks of poor health outcomes, reduced quality of life, and increased hospital costs/length of stay. Limited literature exists regarding the incidences of voice and swallowing dysfunction post-transplant and there is notable methodological variability in the studies that have been done.
By completing rigorous standardized assessment of swallowing and voice in lung transplant patients at Vancouver General Hospital, we can determine the frequency of impairment and observe related variables. We will also have the opportunity to gather information on how these changes impact patients’ quality of life by way of a brief interview. It is imperative that we gain a better understanding of voice and swallowing changes in our lung transplant population.
With this knowledge we will be able to standardize our procedures in order to provide the best quality care for these individuals, while reducing hospital length of stay and acute hospital costs.
Principle Investigator: Kimberly Noble Mentor: Dr. Stacey Skortez Co-investigators: Kevin Chen, Geeta Modha and Larry Worfolk (patient partner)
Psychosocial factors associated with resilience after lung transplantation: an interpretive descriptive study.
To address the lack of research on resilience in lung transplant recipients, this exploratory study is designed to understand how resilience is subjectively experienced by the patients. The proposed research aims to identify factors that contribute to recipient’s successful adjustment after transplant.
Participants will be patients who consent to talking about their experiences with resilience in the context of lung transplantation. To capture patient perspectives of their transplant journeys, the goal is to recruit up to 15 individuals to participate in focus groups and individual interviews. These conversations will be analyzed to better understand a wide diversity of patients’ perspectives and to capture rich descriptions of their stories. Furthermore, findings may help clinicians to gain insights into factors that contribute to everyday joys while adapting to a new life post-transplant to better support transplant recipients.
To produce transformative and patient-driven knowledge, a patient advisory group (PAG) will be created to act as a research partner through the research, including planning, recruitment, data analysis, and knowledge translation. It is hoped that including people with lived experiences as part of the PAG will increase the impact of the findings.
Principle Investigator: Neringa Kubiliene Mentor: Dr. Roland Nador Co-investigator(s): Alana Attema, Courtney Steen, Katrina Smith and Dr. Monica Orendain.
Providence Health Care
Evaluation of the Live Donation Patient and Family Group
There are over 3000 people waiting for a kidney transplant in Canada and, unfortunately, close to 100 people die every year while waiting (Canadian Blood Services, 2020). The best treatment for most of these patients is a live donor kidney transplant (LDKT) (Waterman et al., 2006). With LDKT patients do not need to wait years for a deceased donor, spend less time on dialysis (a treatment which negatively impacts patient’s quality and quantity of life) and have better outcomes than deceased donor transplants (Waterman et al., 2006).
Despite the clear benefits of having a live donor, the rates of LDKT continue to be low (Canadian Blood Services, 2020). One of the hardest things about LDTK is that the responsibility is on the patient to find a live donor. Most patients feel very uncomfortable asking someone to donate a kidney and often lack information about the safety of LDKT and how it all happens (Rodrigue et al., 2008). To this end, in September 2020 this project team created the “Live Donation Group” over Zoom to help participants become more comfortable with having conversations about LDKT by providing education, resources, tools and emotional support.
The Live Donation group interventions include discussions on ways to bring up live donation with family and friends, guest speakers with expertise and lived experience of LDTK, education about how to cope with uncertainty, anxiety and depression, and a chance to share feelings and experiences with others in a similar situation.
This research project seeks to evaluate the effectiveness of this group in helping patients and family members become more comfortable with having conversations about LDKT.
Principle Investigator: Christina Schellenberg Mentor: Dr. Monica Beaulieu Co-investigator: Jody Max
Vancouver Coastal Health
Impact of Tacrolimus or Cyclosporine Co-Administration on Apixaban’s Exposure, Pharmacodynamics, and Bleeding Risk in Liver and Lung Transplant Recipients.
Transplant recipients are at high risk of developing blood clots requiring treatment with blood thinners (anticoagulants), usually for 3 to 6 months and at times for life. For years, warfarin was the only blood thinner that was available in tablet form. Warfarin therapy is however complicated with variable dosages requiring frequent blood work monitoring and many drug-¬drug and drug-¬food interactions. Recently newer oral anticoagulants, such as Apixaban, have become available that are much simpler to use with fixed dosages, no requirement for blood work monitoring and improved effectiveness and less bleeding risk. However, these medications are avoided in transplant patients because there is a potential risk of drug interactions with antirejection medications (tacrolimus and cyclosporine), with antirejection medications increasing apixaban’s levels. There is some limited evidence that apixaban may be safe in transplant patients. In this study, we will initiate apixaban in 20 lung or liver transplant patients who need blood thinner therapy and are taking tacrolimus or cyclosporine. We will then measure apixaban’s blood levels and the degree of anticoagulation in these patients, in addition to closely monitoring them for any signs of bleeding. We hope to demonstrate that apixaban’s levels and its anticoagulant effects are not appreciably increased, and that apixaban can be safely used in transplant patients, leading to simplified anticoagulation therapy in these patients.
Vancouver Coastal Health
Voriconazole associated adverse drug events in lung transplant recipients
Cindy’s team, L to R: Dr. Robert Levy, Dr. Cindy Luo, Dr. Nilu Partovi, Dr. Roland Nador.
Lung transplant recipients require potent life-long immunosuppressive medications to prevent the immune system from recognizing the transplant lungs as foreign; on the other hand, chronic suppression of the immune system also increases a patient’s risk for development of life-threatening infections including fungal infections such as Aspergillosis. Studies have demonstrated that appropriate fungal prophylaxis and treatment are essential components of lung transplantation, as colonization with Aspergillus increases the risk for chronic lung allograft dysfunction and patient death. Voriconazole is the drug of choice for prophylaxis and treatment of Aspergillus in lung transplant recipients; however, voriconazole has multiple adverse drug events associated with its use.
This study has the following aims:
evaluate the incidence of adverse drugs events associated with voriconazole
identify the most common toxicities experienced by lung transplant recipients on voriconazole
evaluate the frequency of medication discontinuation due to voriconazole-related adverse drug events
Principal Investigator: Dr. Cindy Luo Mentor: Dr. Nilu Partovi Co-investigator(s): Dr. Robert Levy, Dr. Roland Nador and Dr. Matthew Kadatz
Providence Health Care
Wound Complications in Kidney Transplant: WONDER
Clare’s Team, L to R: Luba Veverytsa, Clare Bannon, Joanah Habacon, Jessica Donnan, Pamela Turnbull (insert)
The kidney transplant recipient of today is vastly different from the recipient of twenty years ago, when higher-risk patients with diabetes, obesity and other co-morbid conditions were excluded from receiving a transplant. As research and practice has progressed, it has been affirmed that despite the risks of transplanting more marginal recipients, there is still a derived benefit from a quality of life and systems cost perspective.
Wound healing in renal transplant recipients is impaired by the necessary use of immunosuppression and steroid therapy to prevent graft rejection. The common presence of co-morbid conditions further complicate wound management in this patient population. Currently, there is no evidence-based post-operative wound management protocols, and no clear data collection system in place to capture post-operative wound complications. We hope to identify risk factors that will allow us to intervene early or even in the pre-transplant phase, and to develop protocols for better post-operative wound management in kidney transplant recipients.
Principal Investigator: Clare Bannon Mentor: Dr. Luba Veverytsa Co-investigator(s): Pamela Turnbull, Jessica Donnan and Joanah Habacon
BC Children’s Hospital
Increasing Preparedness: Examining the effect of transition themed workshops for pediatrics solid organ transplant recipients before transfer to adult care.
The transition from pediatric to adult care is challenging for adolescents with medical complexity, including recipients of a solid organ transplant (SOT). It is well known that young adult and adolescent recipients are at higher risk of medical complications before, during and after transition. The goal of this study is to design and pilot a patient-centered, evidence informed transition workshop to improve readiness for transfer to adult care. The feasibility, acceptability and design of the workshop will be evaluated in order to incorporate this feedback into future workshops.
Principal Investigator: Kat Broad Mentor: Dr. Tom Blydt-Hansen Co-investigator(s): Sarah Fay and Jessie Ahuja
Prevalence Study of Vitamin D status of Renal Patients Post-Transplant
Christine’s team. L to R: Chelsea Bruce, Erin Waters, Christine Adair, Simran Dukhia, Clare Bannon and Vanessa Lewis (mentor). Not pictured: Katrina McAndrew, Patient Partner
Winning this year’s award is a team led by registered dietitian Christine Adair, “Prevalence Study of Vitamin D status of Renal Patients Post-Transplant.” This project will be assessing vitamin D status in post renal transplant patients at St. Paul’s Hospital (SPH), who are at risk of vitamin D deficiency. Currently, it is not known if patients are obtaining sufficient vitamin D through diet and supplementation, which further increases patients’ risk for bone loss and fracture. Christine says, “We hope that this project will fill a knowledge gap and allow us to re-evaluate clinical practice to improve and expand treatment options for kidney transplant patients. Our team is thrilled to have the opportunity to participate in a project that will build our research skills, while addressing a real issue that patients care about.”
Principal Investigator: Christina Adair Mentor: Vanessa Lewis Co-investigator(s): Erin Waters, Chelsea Bruce, Simran Dukhia and Clare Bannon Patient Partner: Katrina McAndrew
Providence Health Care
Assessing the knowledge, attitudes, and beliefs of Kidney Care Clinic staff about kidney transplantation before and after a multi-pronged education program.
Kidney transplant is the best renal replacement option for most individuals living with end stage renal disease and pre-emptive living kidney donation results in the best prognosis for patients. To increase rates of living kidney donation it is imperative that kidney transplant be discussed with patients early in their chronic kidney disease journey.
In British Columbia, regional Kidney Care Clinic staff are best situated to provide this education and ongoing patient support. A Kidney Care Clinic/BC Transplant pre-emptive transplant working group has been established to develop a variety of educational materials aimed at increasing kidney care staffs’ knowledge and comfort in discussing kidney transplantation with their patients. This study aims to assess the effectiveness of this multi-pronged education approach by testing health care providers’ knowledge, attitudes and beliefs at two time points during the implementation of this multi-pronged educational program.
Principal Investigator: Ruth McCarrell Mentor: Wayne Fritz Co-investigator(s): Erin Waters, David Grenkov, Jody Max, Clare Bannon
Assessment of HeALth Literacy on Medication AdheRence and graft outcomes in Kidney transplant recipients (HALLMARK)
This project specifically looks at improving medication adherence and clinical outcomes of kidney transplant recipients by proactively measuring patient’s health literacy and addressing any gaps in treatment approach for the individual patient, as well as at the system level in the post-transplant clinic. Transplant related patient education materials will be amended and tools developed to tailor to transplant recipients with limited health literacy.
Principal Investigator: Sally Kwan Mentor: Marianna Leung Co-investigator(s): Clare Bannon, Anita Ziekiewicz, Nancy Szeto, Linnea Young
How do highly sensitized patients describe their experience with being on the heart transplant waitlist
This project focuses on understanding the highly-sensitized patient experience on the transplant waiting list. Our aim is to understand the groups lived experience, which would provide an important perspective to the characteristics of this emerging group of transplant patients.
Principal Investigator: Wynne Chiu Mentor: Annemarie Kaan Co-investigator(s): Kim Brownjohn, Erica Johansson
Vancouver Coastal Health
A Survey of Post Lung Transplant Patients to Assess Correlation between Demographic and Transplant-related Factors with the Incidence of Depression/Low Mood
The goal of this study is to assess the potential correlation between the incidence of depression and the indicator variables described in the previous section (demographics, transplant recovery phases, social support, clinic/home follow-up). The study expects that the patient population at VGH will show similar characteristics to those described in the literature and will that the incidence of depression is well-correlated with all of these variables.
The specific objectives of this study are defined as follows:
To determine which literature-identified factors in the study population are associated with incidence of depression.
To determine if there is a relationship between patient compliance with home monitoring and depression.
To determine if there is a relationship between the frequency of clinical follow-up and depression.
Principal Investigator: Grace Adderly Co-investigator(s): Rizza S. Angeles, Alexia L. Jones