Abstract
Those on transplant journeys must try to understand and navigate a complex healthcare system. Little is known about whether the challenges they face differ based on their individual characteristics. This study was done to understand the experiences of those on transplant journeys in Canada. Using an online 57-question cross-sectional survey developed in collaboration with a patient-advisory committee, data was captured on transplant patients, caregivers, and living donors (n = 935). Descriptive statistics and logistic regression analyses are reported. This article includes analyses not previously reported from this larger mixed-methods project. Most participants were female (70.1%), English speaking (92.6%), and white (87.8%). The top 3 concerns identified by participants included financial (42.6%), coordination of care (37.7%), and mental health (37.2%), which affected journey types, organ types, and sociodemographic groups differently. Understanding the perspectives of those going through transplant journeys is critical to inform system change. Further, identifying how individual characteristics influence transplant journeys is essential to person-centered care that creates a lasting impact on the organ donation and transplant system and health outcomes.
Introduction
Those requiring an organ transplant face a challenging journey. This includes navigating the healthcare system, being placed on a waitlist for an uncertain amount of time, followed by the transplant procedure itself, and then adjusting to being a post-transplant recipient or donor. This journey not only affects organ recipients and donors, but their entire support networks.1,2 Although a potentially long and arduous process, organ transplantation is often the only life-saving option for those who have organ failure, and is typically better for survival rates and caregiver burden than alternative treatments such as dialysis.3,4 Transplant journeys are a collection of complex ongoing, personal, and emotional experiences and situations that span over all stages of the transplant process, including diagnosis and referral, assessment, waitlist, surgery, recovery, and living post-transplant or donation.
The complexity of the organ donation and transplantation (ODT) system in Canada can create challenges and barriers for those on transplant journeys. There is a need to improve healthcare service outcomes and to support individuals with lived experience by working with them to improve the ODT system that they rely on.
Not surprisingly, much of the literature on organ donation and transplant research focuses on medical interventions and health outcomes. However, as it has become increasingly important to fully understand the patient experience, recent studies have focused on the psychological, social,5,6 and financial impacts 7 of transplantation. To note, many of these studies focus on specific organ groups and look at transplant experiences in general.5,8 Although there is some research examining the experiences of people on different journey types, such as transplant patients, 9 transplant donors, 10 and caregivers, 11 these have primarily been done separately without comparisons between journey types. Further, there has been little research on if and how varying participant socio- and demographic-backgrounds may impact transplant journeys. Studying individual level characteristics of participants, for example, ethnicity and sex, and how these could impact their transplant journeys is key to fostering an organ donation and transplantation system that aims to deliver person-centered care.
The Canadian Organ Donation and Transplantation Collaborative (ODTC) was established to bring together key stakeholders from a variety of areas (ie, government, health services, research, organ donation organizations, patient and family groups, etc) to create and action priorities and support projects that aim to improve organ donation and transplant system performance, improve patient health outcomes, and align with established patient-identified research priorities.2,12,13 The ODTC previously supported a mixed-methods project to examine the experiences of transplant patients, caregivers, and donors as they navigated the transplant system in Canada.14,15 The project generated 5 main recommendations for the ODT system in Canada, including establishing more mental health supports, creating more peer support programs, improving continuity of care, facilitating more knowledge acquisition, and increasing the amount of resources and support available. There was an opportunity to further analyze the quantitative data to compare journey types and to explore how sociodemographic variables may influence transplant experiences. Our objective for this manuscript was thus to further explore the journeys of those across Canada and to explicate the differences they may experience based on journey types and sociodemographic variables. To note, these studies examine the 3 types of transplant journeys that are discussed in the literature, namely transplant patients/recipients, caregivers, and donors. Previous studies typically focus on only one group (transplant patients, caregivers, or donors)9-11 even though it's likely their journeys and experiences are different. This project attempts to understand similarities and differences between journeys.
Methods
Design
This cross-sectional survey was conducted as part of a larger mixed-methods study14,15 that was supported by the Canadian ODTC. To ensure that the survey (and the larger project) was informed by those with lived and diverse experiences within the organ donation and transplant system, researchers developed it in collaboration with the ODTC's Patient Advocate Advisory Committee (PAAC). Further, part of the larger project included an environmental scan to assess and catalogue the materials, resources, and services available to patients, caregivers, and donors. This resulted in over 300 resources from across Canada that spanned multiple topics, including pre- and post-transplant financial support, nutrition, exercise, medications, and living donation. This information was used to develop survey questions.
Previous reporting of this study focused on merging basic descriptives of survey responses from participants with qualitative findings from interviews and focus groups to develop recommendations for the organ donation and transplant system in Canada. Given the large volume of data that was collected, further analyses of survey responses, including descriptive reporting of questions specific to donors and inferential comparisons between participant journey types and sociodemographic groups, are reported in this article.
Participants and Recruitment
Recruitment occurred between May and November 2021. Patients, living donors, and caregivers on transplant journeys in Canada were invited to participate. Participants had to be 18 years of age or older to be eligible, although people from all transplant organ types and stages of transplantation were encouraged to complete the survey. Promotion of the study occurred through collaborators (eg, the Kidney Foundation of Canada, the Canadian Donation and Transplantation Research Program) and broader supporting organizations (eg, CanSolve, British Columbia Transplant) via newsletters, social media, and presentations. Potential participants were directed to the study website, which hosted a link to the online survey.
Data Collection
An online survey about individuals’ experiences with the transplantation system was co-developed with PAAC members, academic researchers, and a survey design specialist. Several rounds of testing established content and face validity. There were a total of 57 survey questions: 17 demographics questions captured information on traditional demographics (eg, sex and age), the type of transplant journey participants were on (ie, patient, donor, or caregiver), surgery details, and organ type; the remainder of the survey had 4 topic areas, including Main Concerns (1 question), Products, Services, and Supports (19 questions), Navigating the System (11 questions), and Living Donation (9 questions). Survey questions asked about the experiences of participants based on these topic areas to try to understand how each journey type (patients, donors, and caregivers) may differ, and if those are influenced by sociodemographic characteristics. The survey was designed to assess the accessibility, responsiveness, quality, sustainability, and accountability of the ODT system in Canada. At the time of development and administration, we were not aware of any other survey that would capture this kind of data in this way. The survey was translated into French, Traditional Chinese, Simplified Chinese, and Punjabi by certified translators. Survey questions can be found in Supplemental File 1.
Data Analysis
As mentioned, there has been previous reporting of study findings from our larger mixed-methods project14,15 that included descriptives of the survey questions. Encouragingly, participants in general responded favorably to most questions in the survey. The analysis presented in this article focuses on differences between journey type and sociodemographic variables on what was identified as participants’ main concerns in their journeys.
Categorical survey data were analyzed descriptively using counts and proportions. Three logistic regression models, 1 for each of the 3 main concerns identified in the original study (ie, financial, coordination of care, and mental health) were conducted to investigate the association between the concern and different sociodemographic variables. We considered a potential set of covariates to include in each model based on clinical relevance and our knowledge of previous studies in the literature and excluded some based on statistical rationale and data structure (eg, multicollinearity and multiple-response variable). Our final models include the following covariates: province, sex, age, education, ethnicity, journey type, and organ type. Since 3 regression models were run, we adjusted our P-value for multiple testing. Statistical analyses were performed with IBM SPSS for Windows, version 26 (IBM Corp., Armonk, NY, USA), with 2-sided tests and significance set at P < .02.
Results
Of the 991 participants who started the survey, 56 who partially or fully completed the demographics only were not included in the dataset. A total of 935 participants completed at least one of the main survey questions and were included in this study. Of those, 830 participants completed the entire 57-question survey.
The majority of participants were female (70.1%), English speaking (92.6%), white (87.8%), and had postsecondary education (76.3%). Most participants who completed the survey were patients (76.9%); however, donors (7.7%) and caregivers (15.4%) also took part. There was representation from across Canada, although most responses came from Ontario (35.6%), British Columbia (18.7%), Alberta (14.7%), and Quebec (14.0%). Participants were of varying age and employment status. Most participants were on transplant journeys for kidneys (60.2%) and livers (26.9%; Table 1). The majority were first-time recipients (88.1%) and received their transplant from a deceased donor (66.7%; Table 2).
Demographic Characteristics of Sample Based on Main Concerns (n = 935).
Organ type, province/territory, ethnicity, language, and employment variables have been collapsed for the purposes of this article's discussion and analysis. See larger mixed-methods paper for full demographics table.16,17
935 participants filled out at least one survey question and are included in the total n; 906 participants filled out the question about main concerns.
Participants could “select all that apply” for organ type, language, and employment questions.
Transplant Details of Sample (n = 935).
First-time and previous recipients include caregivers who answered the questions based on the person they care for.
Table 3 shows the list of main concerns that participants were asked about in the survey and gives the total number of participants (and a breakdown by journey type) who indicated they had those concerns. The top answers overall for participants were financial (42.6% of participants), coordination of care (37.7%), and mental health (37.2%). Table 1 also includes the counts and percentages of those who indicated they had the main concern(s) based on sociodemographic characteristics.
Indications of Participants’ Main Concerns of Their Transplant Journey (n = 906).
Participants could “select all that apply.”
As these main concerns are also reflected in the literature, 14 we conducted inferential analysis to determine if these concerns (dependent variables) differed based on particular demographics, journey types, or organ types (independent variables). Table 4 presents the associations between the top 3 main concerns and several sociodemographic variables.
Association Between Main Concerns and Other Variables.
Bold values indicate statistical significance.
In terms of financial concerns, participants with a transplanted/donated liver, heart, or lung had significantly more financial concern than participants with a transplanted/donated kidney (liver: P = .015, 95% confidence interval [CI] [1.09, 2.16]; heart and lung: P < .001, 95% CI [1.56, 3.81]). Further, younger participants had more financial concerns than older participants (P < .001, 95% CI [0.67, 0.85]). For coordination of care, compared to patients, donors had less concerns around this (P < .001, 95% CI [0.16, 0.60]). For mental health, female participants had more mental health concerns than male participants (P = .017, 95% CI [1.08, 2.08]), older participants had less mental health concerns than younger participants (P < .001, 95% CI [0.64, 0.81]), and, compared to patients, donors had less concerns about mental health (P < .001, 95% CI [0.13, 0.52]). To note, province, education, and ethnicity didn’t contribute to any of these concerns.
Donor-Specific Questions
The survey included a section specific for donors to complete. Nearly 80% or more of the donors who answered had positive responses for each question, including that they had a good understanding of the donation process (90%), that they were kept informed of where they were in the donation process (78%), that risks and complications were explained to their satisfaction (89%), that possible side effects were explained well (80%), and that donor criteria were explained well (85%). Nearly 40%, however, indicated that they did not have discussions about how to best prepare for surgery (diet, exercise, etc). Not only was personal connection how many donors first heard about donation (53%), but connections are also what led donors to the decision to become a living donor (77%).
Discussion
This study examined how transplant patients, caregivers, and donors’ characteristics influence top concerns during transplant journeys in Canada and summarized donors’ perceptions of services and supports. Many participants rated services and supports positively.14,15 However, ∼40% of 906 participants dealt with concerns around finances, coordination of care, and mental health, consistent across provinces, education, and ethnicity.
Those undergoing liver, heart, or lung transplants/donations had more financial concerns than kidney recipients/donors. Kidney transplants dominate Canada's transplant landscape—in 2023, they accounted for 59.5% of all transplants (2078 kidney vs 1412 other transplants) and 71.9% of waitlists (2522 kidney vs 985 other). 18 Given this dominance, more resources are allocated to kidney-related services and care and more organizations and foundations have been established, resulting in greater funding. Recovery is faster for kidney transplants compared to heart, lung, and liver transplants when examining median discharge times 19 and readmission rates. 20
Although not statistically different, the proportion of kidney respondents indicating concerns was generally lower than liver, heart and lung, and multiple/other respondents for mental health, coordination of care, travel/accommodations, access to information, and care arrangements. Organ-specific factors could influence participant journeys. Kidney transplants often utilize noninvasive techniques (laparoscopic) compared to open surgeries for liver, heart, and lung transplants. This leads to shorter hospital stays, faster return to everyday life, and lower complication rates.16,21
Younger participants had more financial concern than older participants, likely reflecting general financial health differences—older people tend to have greater financial wellbeing and security 17 with less debt. 22 Younger participants may need to work for financial security whereas older participants may receive pension benefits or tax credits.
For coordination of care, donors had fewer concerns than patients. Living donors must be eligible to donate, having either no health conditions or less complex ones compared to recipients. This may require less coordination of care compared to recipients who must see multiple providers regularly for various conditions. Separate coordinators exist for recipients and donors, 23 potentially leading to differing experiences. Donor-specific survey responses indicated very positive experiences with the donor journey overall, suggesting fewer concerns including coordination of care.
For mental health, female participants had more concerns than males. Given our participants’ age distribution, many are likely part of the “sandwich generation,” where women take on most caregiving for children and parents, continuing despite their own health challenges. Women often have more demands for emotional labor from various life aspects. 24 Additionally, it may be more socially acceptable for women to acknowledge mental health concerns than men, who may be less likely to report concerns or seek help. 25 Despite males reporting fewer concerns, they are more likely to die by suicide, 26 making awareness of risk factors and signs of depression critical.
Older participants had fewer mental health concerns than younger participants. Previous research suggests that after transplant, older subjects sometimes feel stronger and younger, 27 contributing to increased wellbeing. Older subjects in another study viewed their age as protective, with lived experience helping them cope. 28 Although our sample showed fewer mental health concerns for older participants, older men are particularly at risk for suicide, 26 making symptom monitoring important for all ages.
Compared to recipients, organ donors had less concerns about mental health. More caregivers rated mental health as a main concern than patients, although this wasn’t statistically significant with the multiple comparisons correction. Patient mental health concerns may stem from guilt, worrying about themselves or their donors, physical pain from transplantation, or adapting to new life and changes in relationships. 29 Caregivers experience significant psychological and emotional burden, 30 with one study finding caregiver burden did not improve post-transplant, and sometimes even increased. 31 Donors report satisfaction and empowerment after donation, knowing they have saved a life, 10 perhaps contributing to more positive mental health. For any type of transplant journey, services and resources related to mental health, especially around connection to peers and support groups need to be offered, 32 and have been found to be beneficial. 33
Our sample of donors felt informed about the donation process but may have not been adequately prepared for surgery. More resources targeting surgery preparation would benefit this population. Another key finding was how their connections are what influenced their decision to donate, highlighting the importance of having others on transplant journeys share their stories.
Participants identified similar challenges outlined in related literature. Approximately 40% of people with kidney failure in Canada reported out-of-pocket costs contributing to significant financial burden. 34 Another study identified health system barriers to living donor kidney transplantation in British Columbia included divided accountability structures, disconnected care process, and financial burden. 35 Many needing transplants also have mental health concerns, with up to 60% experiencing signs of depression. 36 Many of these previous studies focus on specific organ groups or jurisdictions. Our results suggest that these concerns and barriers likely span across organ groups and locations in Canada.
This pan-Canadian survey allowed individuals on transplant journeys to identify strengths and challenges with services, support, and navigating the ODT system. Understanding the system from the view of those within it allows opportunities to strategically inform system change. While the analysis focused on group differences, our larger mixed-methods project identified 5 opportunities for improved care. 14 These included improving mental health support, creating more peer support programs, improving continuity of care and knowledge acquisition, and increasing the amount of resources and support. Prioritizing patient-focused and patient-led recommendations is a critical for enacting tangible, implementable, and measurable solutions.
Limitations
Since our sample was predominantly white (88%) and female (70%), it may not represent the transplantation population. Recent statistics show the percentage of white transplant recipients is actually around 50%. 37 For sex, the literature suggests that regardless of organ type, ∼66% of transplants occur in males, 38 which is opposite our sample distribution.
Findings may not translate to smaller provinces and territories based on fewer responses received from them. However, our sample's geographic distribution closely resembles what the population distribution of Canada was at the time of data collection. 39 The proportion of transplant types in our sample (ie, kidney 60%, liver 27%, etc) matches population expectations. 40
This cross-sectional study was not designed for any inferential analysis and may not be powered to accurately capture relationships between concerns and sociodemographic variables. Although we found differences between journey types, since our sample was mostly patients (76.9%) results may not capture all differences.
Conclusion
Although it is encouraging that, generally, our participants responded very positively to survey questions around services, supports, and their navigation of the transplant system, a few key challenges exist. Identifying strengths and challenges from those within the ODT system creates an opportunity to acknowledge those voices and act upon them. Gaining a better understanding of what works and does not from the perspective of those navigating the system is central to maintaining quality services while improving those areas that may be lacking. Further, it is critical to more precisely identify supports that may be needed by people on the transplant journey based on their individual characteristics such as their sociodemographics. By identifying differences and similarities within certain groups, we understand a more nuanced picture and clearer context about transplant journeys for certain people, and this provides important information to personalize care for both healthcare providers and those receiving care.
Supplemental Material
sj-docx-1-jpx-10.1177_23743735251371781 - Supplemental material for Transplant Journeys in Canada: A Cross-Sectional Survey of Transplant Patients, Caregivers, and Donors
Supplemental material, sj-docx-1-jpx-10.1177_23743735251371781 for Transplant Journeys in Canada: A Cross-Sectional Survey of Transplant Patients, Caregivers, and Donors by Marc Hall, Arfan Afzal, Danielle E. Fox, Carrie Thibodeau, Lydia Lauder, Kristi Coldwell, Sandra J. Davidson and Sarah L. Dewell in Journal of Patient Experience
Supplemental Material
sj-docx-2-jpx-10.1177_23743735251371781 - Supplemental material for Transplant Journeys in Canada: A Cross-Sectional Survey of Transplant Patients, Caregivers, and Donors
Supplemental material, sj-docx-2-jpx-10.1177_23743735251371781 for Transplant Journeys in Canada: A Cross-Sectional Survey of Transplant Patients, Caregivers, and Donors by Marc Hall, Arfan Afzal, Danielle E. Fox, Carrie Thibodeau, Lydia Lauder, Kristi Coldwell, Sandra J. Davidson and Sarah L. Dewell in Journal of Patient Experience
Footnotes
Acknowledgments
The authors would like to acknowledge the patients, donors, and caregivers who generously took the time to be involved in the project and complete the survey. The Kidney Foundation of Canada and the Patient/Advocate Advisory Committee of the Organ Donation and Transplantation Collaborative led the study. The authors also appreciate the support of the University of Calgary, the Canadian Donation and Transplantation Research Program, and the Canadian Transplant Association.
Authors Contributions
Each author made substantial contributions to research design, implementation, or data collection, analysis, and interpretation. Two authors drafted the paper, but all authors edited and revised the paper for submission. All authors have reviewed the manuscript and agree with its content.
Consent for Publication
Participants consented to have the research team use their data in aggregate form for publication.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethical Approval
This study received ethical approval from the Conjoint Health Research Ethics Board (REB19-1555).
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project received funding from Health Canada.
Informed Consent
The survey began with an online implied informed consent form for each participant.
ORCID iDs
Statement of Human and Animal Rights
All Tri-Council Policy Statement (TCPS 2) guidelines were followed for obtaining consent, protecting confidentiality, and securely storing research data.
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
