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Abstract

French

Background:

Given the significant benefits of living donor kidney transplantation, the nephrology and transplant communities are augmenting efforts to increase living kidney donation. However, prior living kidney donors (LKDs) report suboptimal experiences and unmet care needs. The LKDs are healthy, and the vast majority have good outcomes post-donation. Thus, in clinical practice, their care is primarily assumed by practitioners, such as family physicians (FPs).

Objective:

This study aimed to better understand the integration of primary care in LKDs’ donation trajectory from the point of view of the latter. Our specific research questions were: (1) How do LKDs perceive the role of FPs currently integrated into the donation trajectory? (2) What are their needs and expectations from their FPs?

Design:

An interpretive description methodology.

Setting and Participants:

Canadian LKDs who donated a kidney prior to 2020.

Methods:

Qualitative interviews and inductive thematic analysis.

Results:

In our sample of 49 LKDs who donated between 2007 and 2020, 61.2% were women and 87.8% were white. Also, 87.8% and 83.7% were attached to an FP pre- and post-donation (1 by a nurse practitioner) with 16.3% reporting no regular FP post-donation. Although participants provided varying accounts, an overwhelming majority described challenges with timely access to needed care; lack of cohesive continuity of care; variability in the services offered by FPs; and challenges with coordination of care between providers. Many reported poor coordination and communication between FPs and donor teams. Most articulated the desire to see an expanded role for FPs. This included improvements in knowledge regarding living donor care, information and care brokerage, continuous integrative care, and mental and emotional support.

Limitations:

Limited transferability of our findings to other countries with variable payment structures.

Conclusions:

Our work suggests that improving LKD care requires developing care pathways that facilitate donor transition and care coordination between donor teams and primary care practitioners. Given the challenges being faced by primary care in Canada, we believe that pragmatic strategies to better support primary care practitioners and a stronger integration of primary care with the living kidney donation process are essential. In addition, strategies to better support the mental health of LKDs are also needed. The LKDs provide a valuable gift to our health systems and to patients with kidney failure. It is our responsibility to optimize their experiences and improve their care.

Keywords

living kidney donors care needs donation experiences donor health care needs donor care

Introduction

Living kidney donors (LKDs), healthy individuals who donate one of their kidneys to a patient with kidney failure, are a vital source of transplanted organs.¹ They help improve the quality of life and survival of patients who would otherwise need dialysis to survive and significantly reduce the costs associated with caring for patients on dialysis.^1
-6 Globally, around 40 000 people every year become LKDs and help decrease the public health burden attributed to kidney failure.⁷ Thus, the nephrology and transplant communities are augmenting efforts to increase living kidney donation.

However, prior LKDs have highlighted gaps in their long-term care and their overall health care experiences, such as discrepancies in risk communication and poor coordination with/between health care professionals.^8
-11 Some LKDs have reported developing mental health problems, described the feeling of being abandoned, and emphasized the need for psychological support post-donation.^12
-14 Transplant programs have initiated some measures to monitor LKD health, such as bloodwork/urine tests post-donation or periodic reminders to see a primary care provider.^15
-18 However, these measures are not uniformly implemented and compliance is variable.^16,18,19 Moreover, LKDs have highlighted the emphasis on laboratory parameters alone and not on their overall well-being as suboptimal.^10,11,19
-23

The onus of LKD care pre- and post-donation generally falls upon primary care professionals with nephrology or transplant programs following kidney function parameters periodically.^24
-26 This is because candidacy for living kidney donation is dependent on the donor candidates being overall healthy. Thus, pre-donation, the main interaction of most LKDs with health care is predominantly with primary care professionals, such as family physicians (FPs) or nurse practitioners (NPs). Post-donation, the vast majority have favorable outcomes.^27
-29 Thus, their long-term care is also assumed by them. Yet, little is known about their role and integration in an LKD’s care trajectory

In Canada, primary care is generally provided by FPs and the majority of transplant programs defer long-term care of LKDs to FPs.¹⁶ We have previously reported the challenges that Canadian LKDs faced in their donation journey.¹² We now present the second objective of this research study that aimed to better understand the integration of primary care in LKDs’ donation trajectory from the point of view of the latter. Our specific research questions were:

Research Questions 1: How do LKDs perceive the role of FPs currently integrated into the donation trajectory?

Research Questions 2: What are their needs and expectations from their FPs?

Methods

Design

This was an interpretive description study of the experiences of Canadian LKDs whose care is generally assumed by FPs. This qualitative methodology is well suited to generating knowledge relevant to the clinical context in applied health disciplines.³⁰ We followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline and checklist to ensure rigor in our reporting (Checklist attached as Supplement 1).³¹ Our study met the ethics requirements of the Declaration of Istanbul and was approved by the Research Ethics Board of the McGill University Health Centre (2023-8810). The clinical and research activities being reported are consistent with the Principles of the Declaration of Istanbul as outlined in the “Declaration of Istanbul on Organ Trafficking and Transplant Tourism.”

Participants, Sampling Strategies, and Recruitment

From a purposive sampling stance, participants in this study were adult (≥18 years of age) direct or non-direct LKDs who donated across Canada prior to March 2020 and spoke English or French. The March 2020 cut-off point was selected to ensure that the COVID-19 pandemic-related health care disruptions did not affect the clinical evaluation and care experiences. To enhance the possibility of theorization of the findings of this study, we tried to maximize the variation of individuals in our sample according to the following criteria:³² LKDs who came from different geographic/transplant jurisdiction areas and varied in their gender, relationship to the donor, the type of donation, and year of donation.

Participants were recruited from all kidney transplant centers across Canada via (1) flyers developed in consultation with our patient partner (HB) stating the goals of the study and our contact information, displayed in transplant clinics and (2) posts with the same information placed on our social media pages, those of a national research program and the Facebook support group of our patient partner. Also, the Organ and Tissue Donation and Transplantation Advisory Committees of a national organization emailed a flyer to LKDs who had previously consented to be contacted for research.

Among those who contacted us, a research assistant conducted the initial screening of participants by telephone and sent interested and eligible LKDs a consent form in either English or French by e-mail, with an offer to contact the research team if a participant had questions. Eligibility was determined based on the LKDs’ self-reports. All participants provided consent to be either video or audio recorded. The main reasons for non-participation were (1) donated after 2020; (2) saturation achieved in a province; and (3) loss to follow-up.

Data Collection

Semi-structured individual interviews were conducted between August and October 2022 by a bilingual female postdoctoral researcher (K.L., >10 years of qualitative research experience). None of the participants were known to her. Interviews were planned according to existing evidence on best practices in qualitative semi-structured interviewing (including interview testing, duration, literacy level, probing questions).^33,34 Questions regarding access to care and health-information seeking behavior were inspired by existing literature on these topics.^35,36 Questions relating to care experiences were guided by donor perspectives and experiences.¹¹ The interview guide was pilot-tested with 3 experts (patient partner: H.B., a transplant nephrologist: S.S., an experienced qualitative researcher: C.R.) and is attached as Supplement 1. An iterative approach to interviewing was used whereby issues or ideas identified by earlier participants were discussed with subsequent participants to enable further cycles of refinement of concepts and themes.^37,38 Individual interviews were conducted over the telephone or via the Zoom platform, depending on the preference of each participant. We interviewed LKDs until data saturation was reached, which was estimated to have occurred at the 25th interview. However, interviewing continued with LKDs from different provinces to ensure no new themes pertaining to geographical spread were identified. Member checking was not conducted. A financial token of appreciation for participation (a $50 gift card) was offered to each participant.

Data Analysis

The interviews were digitally recorded and transcribed verbatim. Qualitative data analysis occurred concurrently with data collection, and transcripts were analyzed using inductive thematic analysis by 3 members of the research team.³⁹ Transcripts were read, and words, statements, or paragraphs related to the 2 research questions were extracted by assigning a code. Similar excerpts were identified using the same code. Interpretation, clustering, and comparison of the codes resulted in the production of themes. Emerging themes were compared to identify similarities and differences among participants.

Inductive thematic saturation was considered to have occurred when there were no new categories or themes emerging from the data.⁴⁰ Two members of the research team (K.L. and E.F.) developed the initial codebook based upon the reading of 11 transcripts, and 2 members of the team (K.L. and A.P.-B.) then independently coded 10 transcripts to enhance credibility.⁴¹ NVivo (version 1.7.1) was used to support coding. K.L. coded all interviews, and the 3 members met regularly to discuss coding and changes to the codebook. Inter-rater reliability was achieved at 7 transcripts through a systematic process of harmonizing the codebook and ensuring consistency in how data from transcripts were segmented into codes by the 2 coders.

Results

Forty-nine LKDs who donated between 2007 and 2020 participated in this study (Supplementary Figure 1). Of note, 61.2% were women and 87.8% were white. Also, 87.8% and 83.7% were attached to an FP pre- and post-donation, respectively, while 1 LKD was exclusively cared for by an NP. We integrated and analyzed their perspectives collectively and from hereon will use the term FP only to maintain anonymity (Table 1).

Table 1.

Socio-Demographic Characteristics of Participants and Attachment to Family Physicians (N = 49).

Type of donor
Donated without an intended recipient	15 (30.6%)
Donated to a family member	25 (51.0%)
Donated to a friend/colleague	9 (18.4%)
Gender^a
Woman	30 (61.2%)
Man	19 (38.8%)
Other	0
Race or ethnicity^a
White	43 (87.8%)
White-Indigenous	2 (4.1%)
Indigenous	2 (4.1%)
Indo-Caribbean	1 (2.0%)
Southeast Asian	1 (2.0%)
Year of donation
2016-2020	36 (73.5%)
2011-2015	11 (22.4%)
2007-2010	2 (4.1%)
Province of donation^b
Cross-provincial^c	15 (30.6%)
Ontario	20 (40.8%)
British Columbia	6 (12.2%)
Quebec	3 (6.2%)
Manitoba	2 (4.1%)
Alberta	2 (4.1%)
Maritimes	1 (2.0%)
Saskatchewan	0
Employment status
Employed full time	29 (59.2%)
Employed part-time	4 (8.2%)
Retired from paid work	15 (30.6%)
Looking after home/family	1 (2.0%)
Preferred language with health care professionals
English	45 (91.8%)
French	2 (4.1%)
Bilingual (English/French)	2 (4.1%)
Attachment to a family physician pre-donation
Attached:	43 (87.8%)
Pre-existing relationship with a family physician	40 (81.6%)
Pre-existing relationship with a nurse practitioner	1 (2.0%)
Found a family physician because it was a requirement to become an LKD	2 (4.1%)
Not attached:	6 (12.2%)
Lost family physician to retirement around the time of donation	1 (2.0%)
Was not attached to a family physician at new place of residence	1 (2.0%)
On a waitlist to be attached to a family physician	1 (2.0%)
Living in an area with transient family physicians/unsuccessful at getting permanent attachment	3 (6.1%)
Attachment to a family physician post-donation
Attached:	41 (83.7%)
Attached to the same FP/NP as prior to donation	29 (59.2%)
Attached to the same FP as prior to donation but looking for a new one	1 (2.0%)
Attached to a new FP (move, retirement of previous FP, LKD initiated change of FP)	11 (22.4%)
Not attached:	8 (16.3%)
Not attached (lost FP due to retirement or move)	5 (10.2%)
Living in an area with transient family physicians/unsuccessful at getting permanent attachment	3 (6.1%)
Post-donation kidney health follow-up
Primarily assumed by FPs/NPs	32 (65.3%)
Primarily assumed by specialists	13 (26.5%)
No follow-up care	4 (8.2%)

Note. LKD = living kidney donor; FP = family physician; NP = nurse practitioner.

Self-reported.

The proportion is representative of the proportion of LKDs in Canada. Ontario is the largest province of Canada and conducts the most number of living kidney donations in the country.

Donor evaluated in one province and traveled to donate in another province via the paired kidney exchange program from the Canadian Blood Services.

The themes stemming from our analysis per area investigated are now described (Figures 1 and 2). Additional illustrative quotes are presented in Table 2.

Figure 1.

The provision of services to living kidney donors by family physicians/nurse practitioner segregated by the 4 pillars of primary care.

Figure 2.

Needs and expectations of living kidney donors from their family physicians.

Table 2.

Participant Quotes Illustrating the Current and Desired Roles of FPs, From LKD Perspective.

Theme	Illustrative quotes
Current Roles of Family Physicians
1. Challenges with timely access to needed care	“So, the requisition form that I received from the urology department is a blank empty requisition form with a cover letter sort of speaking generally to the general practitioner, ‘Hi, we’re the urology department at the hospital. This is the kidney transplant patient. We need to test for these, this, this, and this.’ I then carry that physically in with me to the walk-in clinic and kind of explain to them why I’m there. And then, of course, obviously the logistics in getting into a walk-in clinic, I mean, they open at 9:00, they tell you to be there at 7:00. And then from there, I’m then going on to a website to book an appointment at a blood collection clinic, so there’s not blood draws being done at the walk-in clinic, you’re, again, going elsewhere, and that’s, yet, another time delay, that’s another step. Where the end result is the test gets done for that walk-in clinic doctor, they receive it, I go in, we look it over, and then it gets sent to the urology department. It just kind of seems like there’s extra people in the middle of that for an inexplicable reason.” (74-01)
	“I didn’t actually ask him about donating a kidney. I didn’t really like my [family] doctor.” (28-12)
	“I didn’t actively solicit their advice. I frankly didn’t want to hear if they were against it.” (13-02)
	“But the day that I came back to work in [city], I developed an infection at the incision. So that’s where things got a little bit complicated for me in terms of who was taking care of that. So, yeah, basically the wound kind of reopened and it was, yeah, I had to go to the ER” (28-15)
2. Lack of cohesive continuity of care	“I actually think that physicians, primary care physicians, need more education themselves about living kidney donation before they start advising on that. [. . .] I was doing all my annual check-ups with him [FP] for my kidney functioning, rather than going back to the [hospital]. So one year he said, well, you now have mild kidney disease, and I was pretty shocked about it. So I went to the nephrology clinic, and had the bloodwork done, and the doctor came in and said, OK, so—and why are you here? And I said, well, I’m here because I have mild kidney disease, and he said, well, you don’t, you’re absolutely fine for somebody who has one kidney. And I—so I just—so I said, could you please write back to my doctor, and tell him that I don’t have mild kidney disease [. . .] So since then I haven’t felt comfortable being followed by a primary care physician for that aspect, so now I go every year to the [hospital], and they do my work-up and follow-up.” (28-01)
	“I find the two systems [transplant and primary care] very separate.” (28-21)
	“I just . . . I get sent requisition in the mail from [. . .] hospital. And I just go to the local lab, and I get it done. I’m supposed to go in for a blood pressure check from my [family] doctor, but I don’t because it’s just such a hassle to book an appointment and go in for a blood pressure check. And because my wife has a blood pressure machine, I can just check it.” (13-09)
3. Variability in the services offered by family physicians	“Since my father had developed kidney disease as a result of vascular disease, that was a concern for me being that I would only have one kidney. But through discussions with the family doctor and the transplant clinic, the doctors there, I was able to be more comfortable with the idea of donating.” (13-04)
	“So my first step, when I decided I wanted to do that was to go to my family doctor, because I figured if anybody was going to tell me, it was a dumb idea, it would be him. And he was very excited about it. He helped me with the documentation that I needed to fill out and stuff like that. He got me all the paperwork. And we started from there. But I started as a liver donor, I had inquired about that. But I wasn’t suitable for that, as the doctor explained that livers are like trees, so you have roots, or do you have branches. And I couldn’t do that, because I had more roots, I guess, is the best way to do it. So he’s the one that said, we can flip over to kidney donation. So I started that process.” (28-16)
	“I would have told her at the time that I was thinking about it, but she didn’t really help that much with stuff. Like I would ask her one-off questions sometimes, but she wasn’t really like a go-to source of information, or like a sounding board, or anything like that.” (28-24)
	“She was not happy that I was doing it, and that’s the only person who discouraged me. I wouldn’t say that people were actively encouraging me from my family, either. I think everybody naturally was quite nervous. But the only person who actively discouraged me was my doctor. She was very uncomfortable with the fact that I was donating, and as a result she actually stepped away from the process of it. I think she was upset that we chose to go through with it. And she was like disappointed, and she sort of like took a backseat in—like she—after the transplant she didn’t call, she didn’t ask like how we were, she didn’t really follow along with the process.” (28-02)
	“My only concern is, where do I go from here, you know, with the new family doctor? Because I have no idea of how good he is at this kind of thing. Should I be asking for an annual check or not?” (13-13)
4. Challenges with coordination of care between providers	“I think that they might’ve had—they got a medical form, you know, just something along the lines of say it’s like a priest at a wedding, if there’s any person here who feels that these two people should not be married, speak now or forever hold your peace. Like, sort of like a form like that. Like if you can determine that there’s the medical reason of any kind that hasn’t been disclosed that would prevent this person from being a kidney donor please say so.” (74-01)
	“I don’t think there was a lot of communication between [donor transplant team] and my family doctor.” (28-40)
	“She was advised all the way along. I know, because every time I did meet with her she commented about what was going on, she had it in her files. So she was kept well appraised of what was going on.” (28-31)
	“I think it’s only electronic record, I think. Yeah, the one that I can even check myself, it’s all there.” (28-15)
Desired Roles of Family Physicians
5. Knowledge of family physicians regarding living donor care	“I don’t know if she’s knowledgeable enough in that type of thing. But she’s a good family doctor in the sense that if she suspects something else, she’s always quick to refer me to someone which I appreciate. Because she won’t just brush something off, you know what I mean? In relation to kidney I haven’t had any issues obviously, but other cardiac, or gastro or that type of thing she’s always quick to refer to me. Like, ‘well let’s not just assume it’s nothing. Let’s just go check with an expert,’ that type of thing. So even if she doesn’t exactly know something I appreciate that she’s able to refer me to someone” (28-08)
	“So I had a hard time with my family doctor, the first year that I had to do the tests, because they had no idea what I was talking about.” (28-16)
	“He was quite excited about it, because he said he’d been in practice for 30 years, and I was the first person to ever inquire about it. So yeah, that’s kind of big.” (28-16)
	“And what I have found with—after donation what I have found is that I do blood tests, regular blood tests and when they see my GFR, my readings for the kidney function are lower than a person with two kidneys, they assume that I have kidney disease and they approach me as if I have kidney disease. But I don’t have kidney disease, I just have one kidney.” (13-04)
6. Information and care brokerage	“[. . .] family physician can probably be a resource for answering very specific questions that the candidate might have, you know, that the candidate may not be able to find easily on the internet. Now I realize the family physician is not a, in the case of kidneys, is not a, you know, a nephrology specialist but I’m sure they could still answer some, you know, fairly detailed questions that, you know, searching on Google might not be the best resource for.” (28-03)“[. . .] it would be some education. Telling people, ‘this is an option.’ Particularly in the Paired Exchange. Most people we’ve told about our experience had never heard of it before. We still talk to people that go, ‘no I’ve never heard of that.’ And I mean it goes on all the time when you get involved. So providing education and information to people who are potential donors I think would be their biggest role in how to get started, and what’s involved with it. I imagine—I was never afraid of the surgery. I imagine that would be the biggest concern for most people.” (28-31)“I think it really depends on the relationship, but they absolutely could be more involved in it. And help with direct answer questions if they have the knowledge there, for the in depth questions.” (28-42)“[. . .] it would have been nice to have my local doctor as a resource to help guide me, and I would have loved that.” (13-09)
7. Continuous integrative care	“I believe a family doctor who would typically be more, you know, more local to the patient than the transplant centre, I believe they could deal with probably most questions about, you know, how a patient, how a donor might be feeling after the surgery say in terms of pain management, would and incision management if there’s any of that involved [. . .]” (28-03)“It’s probably not practical, it’s probably too expensive, but, you know, these are healthy individuals who have put themselves under the knife for some serious surgery, and I think there should be more coordinated follow-up.” (28-01)“And since they [family physicians], hopefully, if you already have a history with them from before, they can almost do a comparison before and after. Because they would know that before better than the transplant team would.” (28-06)
8. Mental and emotional support	“You know, I think that a family doctor is the one that often. It’s like, I would compare it to a caretaker in a school. They often say that the caretakers or the support people in a school are the first people to know if a child is suffering. They’re the ones that see that child walking down the hallway in the school with their head down or crying in the bathroom or those sorts of things. So, I wouldn’t compare a family doctor to a caretaker, but what I’m saying is they’re probably the people that are going to see if something’s going off the rails and they’re the ones that are going to identify if there’s an issue or identify, you know, and it’s not just negative. [. . .] But really the ball was dropped mentally, like there was no follow up, absolutely no check in.” (28-40)“I don’t think the education because I found the transplant team at [hospital], they educated me very well. Very well. I just felt I needed my family doctor there for support, because I felt like the transplant team, they were dealing with me and my mom and the whole gamut. So I felt confident that they were going to tell me, you know, I was good to donate a kidney. I was healthy, all that. But then I needed my family doctor to really just worry about me.” (28-44)

Note. FP = family physician; LKD = living kidney donor; ER = emergency room; GFR = glomerular filtration rate.

Current Integration of Family Physicians in the Living Kidney Donor Care Trajectory

Theme 1—Challenges with timely access to needed care

Most LKDs who had an FP did not report challenges accessing them pre-donation from a geographical or timelines perspective. Some did not perceive the need to consult their FP regarding donation due to the comprehensiveness of the information provided by the donor teams, the nature of the FP-patient relationship or fear of being discouraged by the FP. Post-donation, accessibility challenges were primarily described by those LKDs who had experienced adverse events following hospital discharge and those who were not attached to an FP. They reported challenges with timely interventions during evenings and weekends, when they had donated in another city or province, and with follow-up care. These participants reported resorting to emergency rooms and walk-in clinics.

Theme 2—Lack of cohesive continuity of care

Post-donation, most participants who were under the care of an FP received an envelope from donor teams with an annual reminder to perform a blood test and blood pressure monitoring. A few were not aware of what, if any, kidney health monitoring was being performed. Participants who were followed by specialists but were attached to an FP saw them primarily for routine (non-kidney health-related) care. Others sought help related to kidney health elsewhere or reverted to the donor team, due to the perceived lack of nephrology-related knowledge of the FP or due to a poor FP-patient relationship. The overall care provided by FPs and donor transplant teams was described as siloed. Most participants were unaware of what information was transferred back to their FP post-donation.

Theme 3—Variability in the services offered by family physicians

The few participants who reported consulting their FP pre-donation described their varying roles (Figure 1). Post-donation, FPs fulfilled a variety of roles specific to donation-related follow-up. While most FPs performed the basic annual tests requested by donor teams, others went above and beyond these requirements, by setting their own follow-up schedule. One participant particularly described the important role of their FP in providing support for depression post-donation.

Theme 4—Challenges with coordination of care between providers

The coordination of care with health care professionals outside of the immediate transplant circle was generally described as being poor, and duplication of tests and gaps in information exchange were reported. The involvement of FPs pre-donation was described as limited, with most participants linking pre-donation liaison with requests by the donor teams to perform some testing and complete a questionnaire to determine donor candidacy. Many reported that their FP had been unaware of them embarking upon the donation journey until the potential donor was already undergoing evaluation or after donation. Only 2 participants reported that their FP was informed by donor teams of all tests conducted pre-donation. Post-donation, patient initiative and electronic medical records were described as key in connecting the various pieces of their file.

Living Kidney Donors’ Needs and Expectations Regarding Primary Medical Care

A minority of LKDs did not see any role for FPs, perceiving that it was outside their scope of expertise. Conversely, most LKDs desired more support from FPs in their donation journey (Figure 2). The themes below pertain to areas of improvement as described by LKDs.

Theme 5—Knowledge of family physicians regarding living donor care

Many participants observed important gaps in the knowledge of FPs regarding donation and the necessary follow-up. A particular concern was the post-donation labeling of LKDs as patients with kidney disease. Other participants had no opinion on how knowledgeable their FPs were but had trusted that they would find the right information or make an appropriate referral. A few stated that their FPs revealed that they had not treated LKDs before. Perceived lack of knowledge led some to question whether the FP may be overlooking something important in ongoing health follow-up.

Theme 6—Information and care brokerage

Prior to medical screening by donor teams, participants suggested that FPs could play an important role in answering specific questions regarding donation or directing LKDs to appropriate resources, as most were cautious about the information available electronically. This role was seen as particularly valuable given the FP’s geographical proximity and deep knowledge of the patient’s and family’s medical history. This suggestion was subject to 2 important caveats: the amount of knowledge that an FP had about donation and the quality of their relationship.

During donor screening and evaluation, those LKDs who lived further from transplant centers would have appreciated undertaking some required tests locally and saw a role for FPs in coordinating these tests. In these instances, LKDs highlighted the importance of good information flow between FPs and donor teams, to ensure care coordination.

Opinions regarding the promotion of living kidney donation differed among LKDs. The majority saw value in promotion, given poor knowledge of donation in the general population, but argued that it was not appropriate for FPs to engage in direct promotion during the medical encounter. Suggestions included having information on living donation available in FPs’ offices. The FPs could be particularly helpful in identifying possible LKDs in cases where the potential recipient was also their patient and with their consent.

Theme 7—Continuous integrative care

Participants proposed that immediately post-donation, FPs could perform a general check-up and facilitate incision and pain management; particularly when proximity was a major factor. Most participants who were no longer being followed by the donor teams expressed feelings of abandonment and saw FPs as an adequate resource filling this gap in care, especially when the LKD felt “healthy.” Participants desired regular kidney health monitoring, guided by the FP. Although some FPs took the initiative to monitor kidney health in addition to the regular follow-up provided by donor teams, it was deemed to be unreasonable for both teams to engage in the same type of follow-up. One participant acknowledged that care provision by FPs may be more cost-effective than care provided by the donor teams.

Importantly, participants regarded their FP as someone who would ensure continuity of care, stressing that the current provision of care to LKDs was siloed. This role was deemed particularly valuable in cases where LKD candidates were found to be ineligible on medical grounds, necessitating follow-up.

Theme 8—Mental and emotional support

The mandatory mental health assessment by donor teams pre-donation was perceived to be heavily skewed toward assessing potential coercive influences as opposed to providing a comprehensive health assessment. Beyond this, most participants received no professional mental health monitoring and care. Only one participant explicitly referred to a mental health check-in by their donor team post-donation and one LKD stated that they did not perceive a need for it. Most LKDs relied on support from family, friends, colleagues, and support groups. Reflecting on this gap in care, participants suggested that FPs were well-equipped to address mental health, based on their knowledge of the patient. While education and care provided by donor teams during screening and evaluation were perceived to be of high quality, a few LKDs desired to see their FP as a support person whose primary goal is the care of the LKD and not the kidney recipient who tended to be the focus of the transplant teams.

Discussion

In this study that aimed to better understand FPs’ integration in LKDs’ donation trajectory in Canada, we report that an overwhelming majority of participants described challenges with accessibility, coordination, continuity, and comprehensiveness of care. Poor transition and communication between donor teams and FPs was a key finding. Most participants articulated the desire to see an expanded role for FPs in supporting them in their donation trajectory via improvements in knowledge regarding LKD care, information and care brokerage, continuous integrative care, and mental and emotional support. Our data suggest that improving LKD care requires care pathways that facilitate donor transition and care coordination, stronger integration of primary care professionals with the living kidney donation process and avenues to better support the mental health of LKDs in their entire donation journey.

In prior literature, LKDs have identified suboptimal health care experiences.^8
-14 The LKD care pre- and post-donation is largely undertaken by FPs and we report that some of this may be because of issues that LKDs experience with respect to accessibility, coordination, continuity, and comprehensiveness of care. Of note, these are the 4 pillars of primary care.⁴² A particularly concerning trend was that some LKDs reported no access to an FP post-donation. Also, despite some transplant programs requiring/recommending donor candidates to be attached to an FP,¹⁶ this did not translate into any substantial involvement of the FP or improved coordination and communication between the FP and transplant programs. Comprehensiveness of care was also challenging, and participants requested more information and care brokerage to support them through their evaluation and follow-up. Strategies to improve these deficiencies are needed to improve LKD care and experiences.

Most LKDs envision that some of the care gaps can be addressed by their FPs such as those related to knowledge and care brokerage and mental health support. These have important implications. Many LKDs have described the lack of psychosocial support as a key gap in their care.^12,43,44 Pre-donation, LKDs have expressed dissatisfaction with the psychological assessment, due to its narrow focus on potential coercion, and the lack of support when deemed medically ineligible to donate.^45,46 Post-donation, the need for psychological follow-up has been emphasized and sometimes was urgently needed when the recipient had rejection or lost the graft.^44,47,48 Although primary care professionals may be in the best position to fill this gap, the integration of other professionals (eg, nurse practitioners, mental health professionals) or peer-support networks in the care trajectory of LKDs may be needed. Regardless, improving mental health care provision post-donation is an implication of our findings, and strategies to address this ought to be explored, given this was an expressed unmet health care need not just in our sample but in several other studies.¹¹

With respect to knowledge brokerage, we, however, believe that it would be unreasonable to expect FPs to acquire additional expertise in what may be perceived to be a “niche” area and single-handedly fill the deficiencies in LKD care. Canadian family medicine is in a state of crisis with many FPs reporting poor support and high burnout.^49
-52 We instead propose providing them with the resources that can help answer questions and address concerns of LKDs and those thinking of pursuing living kidney donation. Our future work will focus on obtaining FPs perspectives and discussing the implications of our findings as well as exploring whether NPs and other primary health care professionals can help support LKDs in their donation journey. Notably, in our sample, the care provided by the sole NP was described by the participant very favorably. However, deeper research into the role that they can play in LKD care is needed. Engaging FPs and NPs may also be a novel opportunity to increase living donor kidney transplantation, as primary care is often the only health care contact of prospective LKDs.

This study included a comprehensive exploration of LKDs via one-on-one interviews, allowing deep exploration of their experiences. Given that Canada has universal health care, the cost of accessing care and insurance-related concerns were not major barriers to seeking care, allowing us to obtain richer data on improving care processes. However, we acknowledge that this may limit the transferability of our findings to other countries with variable payment structures. Limited transferability is a common challenge in qualitative research; however, mitigating this risk was our large sample size. We also acknowledge the possibility of respondent bias. Nevertheless, in this qualitative project, we were interested in experiences and perspectives rather than evaluation of care, limiting the incentive of “bias” in responses. Also, this was a self-nominated sample of LKDs who had completed the evaluation and donation process, and it is possible that there is selection bias as those who had overwhelmingly positive experiences were less likely to contact us for participation. Not obtaining equal representation from all provinces is a possible limitation, as is the overrepresentation of a linguistically and ethnically homogeneous group (the majority were white and anglophone). There is the possibility of recall bias in the case of LKDs who donated a long time ago.

Despite these limitations, the findings of this study are critical given the rising burden of kidney disease and kidney failure.⁵³ The total number of individuals with kidney diseases exceeds 850 million.⁵⁴ In many countries, dialysis and deceased donation are out of reach for many patients with kidney failure, and living donor kidney transplantation is the only available therapeutic option.⁵⁵ It is also the best therapeutic option among eligible patients with kidney failure. Thus, the nephrology and transplant communities are leading initiatives to increase living kidney donation. However, prior LKDs have repeatedly reported suboptimal long-term care and experiences.^8
-14 Our study suggests that stronger engagement of primary care professionals may improve LKD experiences and care. A better integration of primary care across the entire trajectory of an LKD can also optimize data collection and reinforce efforts to improve donor follow-up.^{19,22
,24,56
-59} It can potentially increase living kidney donation and living donor kidney transplantation, as the main contact of potential LKD candidates is with primary care. A well-informed primary care professional can optimally promote living kidney donation and expand the living donor pool.

In conclusion, we have identified gaps in family medicine service delivery to LKDs and that LKDs desire to see an expanded role of their FP in their donation journey. Since the onus of LKD care falls on the shoulders of primary care professionals, our study highlights the need to optimally integrate primary care in the living kidney donation process and support primary care professionals who provide care to LKDs. This can also reinforce efforts to optimize post-donation follow-up, increase compliance with data collection, and enhance their health outcomes. In addition, we strongly advocate for strategies to better support the mental health of LKDs. The LKDs provide a valuable gift to our health systems and to patients with kidney failure. We believe that it is the responsibility of the nephrology and transplant communities to optimize LKD experiences and improve their long-term care and well-being.

Supplemental Material

sj-docx-1-cjk-10.1177_20543581251324548 – Supplemental material for “They Know You Better Than the Transplant Team”: An Interpretive Description Study Exploring the Perspectives of Living Kidney Donors About Care Received From Family Physicians

Supplemental material, sj-docx-1-cjk-10.1177_20543581251324548 for “They Know You Better Than the Transplant Team”: An Interpretive Description Study Exploring the Perspectives of Living Kidney Donors About Care Received From Family Physicians by Katya Loban, Charo Rodriguez, Antoine Przybylak-Brouillard, Elie Fadel, Heather Badenoch, Peter Nugus, Ann Bugeja, Justin Gill, Marie-Chantal Fortin, Emilie Trinh, Scott McKay and Shaifali Sandal in Canadian Journal of Kidney Health and Disease

Footnotes

Acknowledgements

The authors sincerely thank all the living kidney donors who participated in this study, and the Organ and Tissue Donation and Transplantation Advisory Committees of the Canadian Blood Services and the Canadian Donation and Transplantation Research Program for assisting with participant recruitment. Dr S.S. is supported by the Chercheur boursier clinicien—Junior 1 award from the Fonds de recherche du Québec—Santé and Dr K.L.—by a scholarship from the Women in Transplantation initiative of The Transplantation Society.

List of Abbreviations

FP, family physician; LKD, living kidney donor; NP, nurse practitioner.

Author Contributions

K.L.: Designed the work; data collection, analysis and interpretation; drafted the manuscript; approved the final version.

P.N and C.R.: Helped design the work; data interpretation; revised the manuscript; approved the final version.

A.P-B. and E.F.: Data analysis and interpretation; revised the manuscript; approved the final version.

H.B.: Helped design the work and with participant recruitment; revised the manuscript; approved the final version.

A.B, J.G., and M.-C.F.: Participant recruitment; data interpretation; revised the manuscript; approved the final version.

S.M. and E.T.: Data interpretation; revised the manuscript; approved the final version.

S.S.: Conceived and designed the work; participant recruitment; data interpretation; drafted the manuscript; approved the final version.

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr S.S. has received an education grant from Amgen Canada to increase living donor kidney transplantation. The rest of the authors have no relevant disclosures.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work is supported by an academic grant from the Department of Medicine at McGill University Health Centre, a 2023-24 Bridge Grant from the Canadian Institutes of Health Research’s patient-oriented research priority announcement (PJM 185756) and the BloodTechNet Award from the Canadian Blood Services.

Ethical Approval and Consent to Participate

Our study was approved by the Research Ethics Board of the McGill University Health Centre (2023-8810), and informed consent was obtained from all participants

Consent for Publication

Consent for Publication was obtained from all authors.

ORCID iDs

Ann Bugeja

Marie-Chantal Fortin

Emilie Trinh

Shaifali Sandal

Data Availability

The data sets generated and analyzed during the current study are not publicly available because informed consent to share transcribed data for secondary use beyond this research was not obtained from participants.

Supplemental Material

Supplemental material for this article is available online.

References

United States Renal Data System. 2024 USRDS annual data report: epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2024.

Klarenbach

Tonelli

Chui

Manns

BJ.

Economic evaluation of dialysis therapies. Nat Rev Nephrol. 2014;10(11):644-652. doi:10.1038/nrneph.2014.145

Held

McCormick

Ojo

Roberts

JP.

A cost-benefit analysis of government compensation of kidney donors. Am J Transplant. 2016;16(3):877-885. doi:10.1111/ajt.13490

Wolfe

Ashby

Milford

, et al. Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation, and recipients of a first cadaveric transplant. N Engl J Med. 1999;341(23):1725-1730. doi:10.1056/NEJM199912023412303

Tonelli

Wiebe

Knoll

, et al. Systematic review: kidney transplantation compared with dialysis in clinically relevant outcomes. Am J Transplant. 2011;11(10):2093-2109. doi:10.1111/j.1600-6143.2011.03686.x

Manns

Mendelssohn

Taub

KJ.

The economics of end-stage renal disease care in Canada: incentives and impact on delivery of care. Int J Health Care Finance Econ. 2007;7(2-3):149-169. doi:10.1007/s10754-007-9022-y

Global Observatory on Donation and Transplantation. Accessed May 1, 2024. https://www.transplant-observatory.org/

Adams-Leander

The experiences of African-American living kidney donors. Nephrol Nurs J. 2011;38(6):499-508; quiz 509.

Meyer

Wisløff

Bjørk

Wahl

Andersen

Hartmann

Long-term, self-reported health outcomes in kidney donors. BMC Nephrol. 2016;17(1):8. doi:10.1186/s12882-016-0221-y

10.

Manera

Hanson

Chapman

, et al. Expectations and experiences of follow-up and self-care after living kidney donation: a focus group study. Transplantation. 2017;101(10):2627-2635. doi:10.1097/TP.0000000000001771

11.

Loban

Milland

Hales

Lam

Dipchand

Sandal

Understanding the healthcare needs of living kidney donors using the picker principles of patient-centered care: a scoping review. Transplantation. 2025;109(1):110-122. doi:10.1097/tp.0000000000005080

12.

Loban

Fadel

Nugus

, et al. Living kidney donors’ health care needs, experiences, and perspectives across their entire donation trajectory: a semistructured, in-depth interview study. Kidney Int. 2024;105(2):251-258. doi:10.1016/j.kint.2023.11.004

13.

Menjivar

Torres

Manyalich

, et al. Psychosocial risk factors for impaired health-related quality of life in living kidney donors: results from the ELIPSY prospective study. Sci Rep. 2020;10(1):21343. doi:10.1038/s41598-020-78032-8

14.

Clemens

Thiessen-Philbrook

Parikh

, et al. Psychosocial health of living kidney donors: a systematic review. Am J Transplant. 2006;6(12):2965-2977.

15.

Brown

Jr Higgins

Pruett

TL.

The evolution and direction of OPTN oversight of live organ donation and transplantation in the United States. Am J Transplant. 2009;9(1):31-34. doi:10.1111/j.1600-6143.2008.02433.x

16.

Loban

Robert

Alam

Sandal

Long-term care of living kidney donors needs a better model of healthcare delivery. Prog Transplant. 2023;33(3):242-246. doi:10.1177/15269248231189879

17.

Ruck

Zhou

Thomas

, et al. Electronic messaging and communication with living kidney donors. Clin Transplant. 2018;32(2). doi:10.1111/ctr.13184

18.

Singh

Caton

Johnston

, et al. 413.3: towards a national system of living donor follow-up in Canada. Transplantation. 2022;106(9S):S410. doi:10.1097/01.tp.0000887660.11543.37

19.

Henderson

Thomas

Shaffer

, et al. The national landscape of living kidney donor follow-up in the United States. Am J Transplant. 2017;17(12):3131-3140. doi:10.1111/ajt.14356

20.

Dhalla

Lloyd

Lentine

, et al. Long-term outcomes for living kidney donors with early guideline-concordant follow-up care: a retrospective cohort study. Can J Kidney Health Dis. 2023;10. doi:10.1177/20543581231158067

21.

Schold

Buccini

Rodrigue

, et al. Critical factors associated with missing follow-up data for living kidney donors in the United States. Am J Transplant. 2015;15(9):2394-2403. doi:10.1111/ajt.13282

22.

Lam

Lentine

Hemmelgarn

, et al. Follow-up care of living kidney donors in Alberta, Canada. Can J Kidney Health Dis. 2018;5. doi:10.1177/2054358118789366

23.

Meyer

Bjørk

Wahl

Lennerling

Andersen

MH.

Long-term experiences of Norwegian live kidney donors: qualitative in-depth interviews. BMJ Open. 2017;7(2):e014072. doi:10.1136/bmjopen-2016-014072

24.

Levan

Waldram

DiBrito

, et al. Financial incentives versus standard of care to improve patient compliance with live kidney donor follow-up: protocol for a multi-center, parallel-group randomized controlled trial. BMC Nephrol. 2020;21(1):465. doi:10.1186/s12882-020-02117-9

25.

Ommen

LaPointe Rudow

Medapalli

Schröppel

Murphy

When good intentions are not enough: obtaining follow-up data in living kidney donors. Am J Transplant. 2011;11(12):2575-2581. doi:10.1111/j.1600-6143.2011.03815.x

26.

Mandelbrot

Pavlakis

Karp

Johnson

Hanto

Rodrigue

. Practices and barriers in long-term living kidney donor follow-up: a survey of U.S. transplant centers. Transplantation. 2009;88(7):855-860. doi:10.1097/TP.0b013e3181b6dfb9

27.

Segev

Muzaale

Caffo

, et al. Perioperative mortality and long-term survival following live kidney donation. JAMA. 2010;303(10):959-966. doi:10.1001/jama.2010.237

28.

Muzaale

Massie

Wang

M-C

, et al. Risk of end-stage renal disease following live kidney donation. JAMA. 2014;311(6):579-586. doi:10.1001/jama.2013.285141

29.

Garg

Nevis

McArthur

, et al. Gestational hypertension and preeclampsia in living kidney donors. N Engl J Med. 2015;372(15):1468-1470. doi:10.1056/NEJMc1501450

30.

Thorne

SE.

Interpretive Description: Qualitative Research for Applied Practice. 2nd ed. Routledge; 2016.

31.

Tong

Sainsbury

Craig

Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357. doi:10.1093/intqhc/mzm042

32.

Everitt

Howell

DC.

Encyclopedia of Statistics in Behavioral Science: Volume 2. John Wiley; 2021.

33.

Green

Thorogood

Qualitative Methods for Health Research. 4th ed. Sage; 2018.

34.

Wilkinson

Focus groups in health research: exploring the meanings of health and illness. J Health Psychol. 1998;3(3):329-348. doi:10.1177/135910539800300304

35.

Wong

Haggerty

Measuring Patient Experiences in Primary Health Care: A Review and Classification of Items and Scales Used in Publicly-available Questionnaires. UBC Centre for Health Services and Policy Research; 2013.

36.

Choi

Jeong

Characteristics of the measurement tools for assessing health information-seeking behaviors in nationally representative surveys: systematic review. J Med Internet Res. 2021;23(7):e27539. doi:10.2196/27539

37.

DeJonckheere

Vaughn

LM.

Semistructured interviewing in primary care research: a balance of relationship and rigour. Fam Med Community Health. 2019;7(2):e000057. doi:10.1136/fmch-2018-000057

38.

Green

Thorogood

Qualitative Methods for Health Research. Sage; 2014.

39.

Braun

Clarke

Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.

40.

DiCicco Bloom

Crabtree

. The qualitative research interview. Med Educ. 2006;40(4):314-321.

41.

Streubert

Speziale

Carpenter

Qualitative Research in Nursing. 3rd ed. Lippincott Williams & Wilkins; 2003.

42.

Starfield

Shi

Macinko

Contribution of primary care to health systems and health. Milbank Q. 2005;83(3):457-502. doi:10.1111/j.1468-0009.2005.00409.x

43.

Loban

El Wazze

Milland

Hales

Slominska

Sandal

Experiences of living kidney donors: a synthesis of unsolicited patient narratives. Transplant Rev. 2024;38(3):100855. doi:10.1016/j.trre.2024.100855

44.

Ong

JQL

Lim

LJH

RCM

CSH

. Depression, anxiety, and associated psychological outcomes in living organ transplant donors: a systematic review. Gen Hosp Psychiatry. 2021;70:51-75. doi:10.1016/j.genhosppsych.2021.03.002

45.

Ralph

Chadban

Butow

, et al. The experiences and impact of being deemed ineligible for living kidney donation: semi-structured interview study. Nephrology. 2020;25(4):339-350. doi:10.1111/nep.13628

46.

Shaw

RM.

Rethinking elements of informed consent for living kidney donation: findings from a New Zealand study. Health Sociol Rev. 2015;24(1):109-122. doi:10.1080/14461242.2015.1016993

47.

Sanner

MA.

The donation process of living kidney donors. Nephrol Dial Transplant. 2005;20(8):1707-1713.

48.

Andersen

Bruserud

Mathisen

Wahl

Hanestad

Fosse

Follow-up interviews of 12 living kidney donors one yr after open donor nephrectomy. Clin Transplant. 2007;21(6):702-709.

49.

Newton

Progress and hope in challenging times. Can Fam Physician. 2023;69(10):735-735. doi:10.46747/cfp.6910735

50.

Kiran

Keeping the front door open: ensuring access to primary care for all in Canada. CMAJ. 2022;194(48):E1655-E1656. doi:10.1503/cmaj.221563

51.

College of Family Physicians of Canada. Crisis in family medicine. Accessed February 1, 2024. https://www.cfpc.ca/stopwaiting

52.

Duong

Vogel

Ontario, Quebec and Alberta lead record family medicine residency vacancies. CMAJ. 2023;195(15):E557-E558. doi:10.1503/cmaj.1096047

53.

Bello

Okpechi

Osman

, et al. Epidemiology of haemodialysis outcomes. Nat Rev Nephrol. 2022;18(6):378-395. doi:10.1038/s41581-022-00542-7

54.

Jager

Kovesdy

Langham

Rosenberg

Jha

Zoccali

A single number for advocacy and communication—worldwide more than 850 million individuals have kidney diseases. Kidney Int. 2019;96(5):1048-1050. doi:10.1016/j.kint.2019.07.012

55.

Bello

Levin

Tonelli

, et al. Global Kidney Health Atlas: a report by the International Society of Nephrology on the current state of organization and structures for kidney care across the globe. International Society of Nephrology; 2017, pp. 107-137.

56.

Eno

Ruck

Van Pilsum Rasmussen

, et al. Perspectives on implementing mobile health technology for living kidney donor follow-up: in-depth interviews with transplant providers. Clin Transplant. 2019;33(8):e13637. doi:10.1111/ctr.13637

57.

Orandi

Reed

, et al. Donor-reported barriers to living kidney donor follow-up. Clin Transplant. 2022;36(5):e14621. doi:10.1111/ctr.14621

58.

Reese

Simon

Stewart

Bloom

RD.

Medical follow-up of living kidney donors by 1 year after nephrectomy. Transplant Proc. 2009;41(9):3545-3550. doi:10.1016/j.transproceed.2009.04.016

59.

Rodrigue

Fleishman

Sokas

, et al. Rates of living kidney donor follow-up: findings from the KDOC study. Transplantation. 2019;103(7):e209-e210. doi:10.1097/tp.0000000000002721

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