Lessons Learned About the Education Needs of Kidney Transplant Recipients: A Mixed-Method Study

Abstract

Background:

Much of the literature on kidney transplant education focuses on educating recipients prior to transplant or in the early postoperative period. It is unknown whether the information provided is meaningful to patients or whether the importance of education topics changes with time.

Objective:

We sought to identify the learning needs of patients post-kidney transplant.

Design:

Our multidisciplinary team conducted a mixed-method study to better understand the learning needs of patients; what is important to them in the early postoperative period and a year after transplant.

Setting:

One urban academic hospital performing kidney transplant in Ontario, Canada. Data were collected between September 2019 and March 2021, including during the COVID-19 pandemic.

Participants:

A convenience sample of 20 participants in the post-kidney transplant clinic. Participants’ mean age was 56 (SD ± 11) with 75% of participants male gender.

Methods:

Twenty kidney transplant patients were recruited between 3 and 6 months post-transplant. Participants completed an initial demographic questionnaire. They completed the Learning Needs Inventory (LNI) and a one-on-one semi-structured interview at 2 time points: 3 to 6 months post-transplant and 12 to 18 months post-transplant.

Results:

Patient interviews revealed that their access to a trustworthy health care team, support system, and reported challenges post-transplant shaped their ability to engage in learning. Patients shared that each aspect influences when and what topics were important to them, which allowed patients to obtain personalized education. A multidisciplinary team extending beyond physicians and nurses to include professionals such as pharmacists, dietitians, and social workers can best address patient-specific education needs post-transplant was highlighted in patients’ comments. Patients revealed that their support system helps to develop self-reliance and support their transition after transplant to allow them to recover and manage challenges after transplant. Support systems varied from family, friends, colleagues and included social media and community organizations were helpful. Our study identified 3 realms of challenges post-transplant including: emotional, physical, and financial. Quantitative data showed significant findings on the level of importance regarding the use of alcohol, demonstrating a shift in median rating of “not important at all” to “not very important” (P = .016). A significant effect (P = .031) shifting the median rating of post-transplant dental care from of “a little important” to “very important.”

Limitations:

The small convenience sample with only English-speaking patients used in this study may have affected our ability for generalizable results. Part of this study was completed during the COVID-19 pandemic, which may have led to individual responses to vary, as priorities may have been different during the pandemic.

Conclusion:

Only 2 topics (dental care and use of alcohol) shifted in importance. Most education topics (ie, rejection, infection) covered in 3 to 6 months post-transplant continued to be important for those that have had their transplant for more than a year suggesting the need for ongoing education post-transplant. Multidisciplinary care teams play an important role in providing personalized education to patients and help to address emotional, physical, and financial challenges after transplant. This study showed the importance of social media and community organizations in patients’ education offering an additional avenue of support and to hear others, lived experiences.

Trial registration:

Not registered.

Introduction

Kidney transplantation is the preferred treatment modality for most patients, offering improved survival and better quality of life than dialysis.^1-3 Although kidney transplants may provide recipients with the opportunity to be dialysis-free, they can also cause stress and uncertainty as the patient navigates this process. Recipients are required to adapt to new expectations including medication routines and a new health care team, and to adjust their habits to manage their chronic disease and transplant.^3,4 Transplant clinicians use education to provide recipients with appropriate knowledge and tools to adapt to these new expectations.^2,5

Much of the literature exploring kidney transplant education focuses on educating recipients prior to their transplant, with the goal of assisting patients in making informed decisions about choosing to have a transplant.^3,6 Meanwhile, education in the early post-operative period typically focuses on those newly living with a transplant, such as medication adherence, signs of infection, and signs of rejection. ⁶ However, education in the postoperative period comes with its own challenges as patients’ experiences are often complex, and learning can be difficult due to physical and mental stress in the postoperative period.^6,7 For example, a “honeymoon phase” has been described in the weeks following transplant, which is often precipitated by functional improvements in patients’ experience. Recipients however often return to the reality of their situation following the honeymoon phase. ⁸ Euphoria is replaced by the anxiety of potential complications, such as loss of new graft and worry about returning to dialysis. These worries often subside 9 to 12 months post-transplant once recipients have an opportunity to adapt to their “new normal” and observe stability in their health. ⁸ To date, there is a paucity of literature on whether the information provided to kidney transplant recipients at various time points post-transplant is effective in helping patients with self-management tasks and whether long-term needs vary among patients.^3,4 Current evidence provides little guidance on the learning needs of post-transplant patients through the care continuum and on how to best address these needs. ⁴

Most education programs are developed by health care professionals with minimal involvement and input from patients. ⁴ Health care professionals often focus on the facts and theoretical aspects of disease management such as the medical aspects of the disease, seldom addressing patients’ concerns about how to live with their chronic disease and support their psychosocial health.^2,9 Therefore, health care professionals may make assumptions regarding what is important for patients to learn after transplant.^4,10 Transplant recipients rely on health professionals in the transplant clinic for information and seek reassurance that they are self-managing care correctly.^7,10

The purpose of this study was to validate the education topics currently being discussed with post-kidney transplant recipients and to determine whether these topics are relevant and meaningful to patients. In addition, we sought to determine if topics that were covered in the early postoperative period (3-6 months) were still important 12 to 18 months post-transplant. By looking at post-transplant recipients’ learning needs at these 2 time points, we were able to determine if we are meeting the needs of our patients at various points in their post-transplant health care journey. We hypothesized that the learning needs of patients will continue to evolve months and years after transplantation, and what is important to them in the early postoperative period may shift/evolve a year after transplantation.

Methods

Study Design and Methods

This mixed-methods study was completed at Unity Health Toronto—St. Michael’s Hospital; a kidney transplant clinic in an urban academic acute care hospital located in Toronto, Ontario. It is one of the largest kidney centers in Canada that follows approximately 1900 post-transplant recipients at the time of the study (September 2019 through March 2021). This patient population is highly diverse and represents 15 different spoken languages. More than half of all patients are born outside of Canada. Patients are scheduled for clinic visits monthly between 3 and 6 months post-transplant. The clinic is composed of an interdisciplinary team that includes transplant nephrologists, nurses, dietitians, social workers, and pharmacists. In this study, participants completed a learning needs inventory and a one-on-one semi-structured interview at 2 time points post-transplant.

Our study consisted of a mixed-method approach to integrate qualitative and quantiative research methods to draw on the strengths of each. To develop this study, we began with a patient focus group to understand education needs of patients post-transplant. With the focus group topics, the research team developed the Learning Needs Inventory to create a quantitative arm and the qualitative questions to be asked. A mixed-method approach allowed unique perspectives that patients have post-transplant to be shared and highlighted the value of integrating quantitative and qualitative findings through a robust dataset to understand education needs post-transplant. The data were integrated after collection to provide insight into patients individual and collective education needs post-transplant.

The study protocol was reviewed by our institutional research ethics board (REB: 18-134) and approved to proceed. Informed consent was obtained from all participants in the study.

Participants

Ninety-one patients in the post-kidney clinic were screened for eligibility. A total of 71 patients were excluded: declined (n = 12), more than 6 months post-transplant (n = 26), unable to provide informed consent due to capacity (n = 8), unable to provide informed consent or complete study protocol (n = 4), and less than 6 months post-transplant (n = 1).

Twenty adult kidney transplant recipients within 3 to 6 months post-transplant were recruited for this study and provided informed consent. Patients were recruited from the post-transplant clinic using a convenience sample and were approached face-to-face. Participants met inclusion criteria if they were a patient of the clinic, had a kidney transplant within the previous 3 to 6 months and able to provide informed consent. Participants were excluded if they self-identified as not being comfortable reading English and if they were unable to provide consent since substitute decision makers were not the focus on this study.

The study consisted of a survey and in-depth interview that was completed at 2 time points: 3 to 6 months post-transplant and then at 12 to 18 months post-transplant in the post-transplant clinic.

Learning Needs Inventory Questionnaire

Following a thorough literature search of tools measuring learning needs, it was determined that there was no comprehensive, validated tool that assessed the needs of post-transplant recipients. Similar tools have previously been developed for different patient populations, such as the Patient Learning Needs Survey (PLNS) developed by Bubela et al ¹¹ 1990, which covers topics relevant to medical-surgical patients during the early discharge period. The focus of the PLNS was to measure patients’ perceptions of their learning needs at the time of discharge from hospital to home. Although the PLNS appears to be broad and applicable to different medical-surgical populations, it does not address the learning needs or experiences specific to post-transplant patients in either the immediate post-operative or long-term phase of recovery.

We used the conceptual underpinnings of the PLNS as a framework to develop a tool specific to transplant recipients. The Delphi method was used to develop the Learning Needs Inventory (LNI) questionnaire. ¹² The Delphi method was chosen as a well-established approach to answering questions that require a consensus across different subjects. The Delphi method is an acceptable and practical tool that has been used in similar work. A list of 48 transplant-related health topics were generated based on inventories published in the literature.^2,4,7,11 Patients’ reported interest in learning about topics such as diet, safe return to exercise, and the mental health aspects of transplant, but these were not always addressed at clinic visits. With the development of the LNI, we sought to ensure education topics were holistically covered post-transplant. The list of topics was then reviewed by a multidisciplinary team of clinicians at the kidney transplant clinic including nursing, and allied health (pharmacist, dietitian, social worker). A patient education specialist employed by the hospital reviewed the LNI for reading levels and consistent wording. The final draft of the LNI asked participants to rate the importance of each health topic using a 4-point Likert scale ranging from 1 (not at all important) to 4 (very important). At this stage, the questionnaire was shared with kidney transplant recipients for validation. Five patients reviewed the tool for the clarity of the items being measured and the reasonableness of the time required to complete the questionnaire (Supplemental Appendix 1).

Procedure

Data was collected at 2 time points during this study: 3 to 6 months post-kidney transplant and 12 to 18 months after kidney transplant. At each time point, participants completed a LNI questionnaire and one-on-one interview. In addition, during the first session, each participant completed a demographic questionnaire detailing their level of education, socioeconomic status, and a detailed history of their transplant surgery, including type of transplant, and duration of time on dialysis prior to transplantation can be found in Table 1. Data collection for the first phase (3-6 months) of the study took place mostly in person (n = 16) at the time of the participants’ pre-scheduled transplant clinic appointment. Interviews were conducted by telephone if the patient preferred (n = 4). The second phase of data collection (12-18 months post-transplant) occurred during the COVID-19 pandemic, when face-to-face patient interactions were minimized due to the risk of post-transplant patients contracting COVID-19. As a result, the LNI was mailed to all participants and one-on-one interviews were conducted over the phone.

Table 1.

Demographics.

Sample	20
Male gender	75%
Mean age (years) ± SD	56 ± 11
Range age (years)	39-74
Previous dialysis	95%
Mean dialysis vintage (years) ± SD	3.9 ± 3.1
Range dialysis vintage (years)	0.3-12
Deceased donor transplant	60%
Marital status:
Single	15%
Married/common-law	70%
Divorced	10%
Widow/er	5%
Employment status:
Employed	40%
Unemployed	10%
Disability	30%
Retired	20%
Total annual house hold income:
Under $15,000	5%
$15 to $45,000	20%
$45 to $85,000	25%
Over $85,000	25%
Prefer not to answer/Not answered	25%
Mean number of dependents ± SD	1.0 ± 1.0
Range number of dependents	0-3
Highest level of education:
Some high school	15%
High school graduate	10%
Some college/university	20%
College diploma/university degree	55%

We conducted interviews with participants at 3 to 6 months (n = 20 participants) and 12 to 18 months (n = 19 participants) post kidney transplant. One participant did not complete the survey at 12 to 18 months. Interviews were conducted using a interview guide and recorded by the Kidney Research Team (authors M.N. and L.R. who are both research coordinators at our organization) separate from the researchers to help avoid bias. These are female identifying authors employed by the hospital as research coordinators with extensive training in research. No relationship was established by the interviewers before study commencement however participants were introduced to the interviewer and provided the goals of research. Each interviewer is a trained researcher with interest in providing quality patient care to post-transplant patients. Interviews at 3 to 6 months were conducted in person or over the phone as per patient preference. Due to COVID-19, all 12- to 18-month interviews were completed over the phone. Interviews were approximately 30 minutes to 1 hour in length. Field notes collected information regarding the physical or social setting (ie, interruptions, noises), participant’s non-verbal communication, and any other relevant details that give context to interview including the interviewers’ own reactions. Interviews were scheduled in advance. During in-person interviews, only the participant was present for most interviews. Telephone interviews were one-on-one but we don’t know if others were in the room with the participant. If they were, they did not obviously participate in the interview. Participant interviews were recorded on tape and autotranscribed. Two recording devices were used for each interview in case of a technical failure. The autotranscription was listened to, verified, and corrected as needed by author T.T. Participant interviews, audio recordings of interviews were analyzed by authors M.L.G., S.L., J.A., and L.C. Data were collected until saturation to draw necessary conclusions, and any further data collection did not produce value-added insights. No repeat interviews were completed and transcripts were not provided to participants for comments and/or corrections.

Data Analysis

Statistical analyses were performed using IBM SPSS Statistics (version 24) with α level set at 0.05. Participants’ responses were compared between phases 1 and 2 for each question. Exact sign tests were performed to determine whether participants’ responses were significantly different between phase 1 (3-6 months post-transplant) and phase 2 (12-18 months’ post-transplant).

The transcription method included word-for-word transcription and recorded all hesitations, pauses, utterances, cross-talking, and incomplete sentences. The transcriptions were proof-read and cross-checked by members of the research team. Qualitative analysis using the DEPICT model was used to interpret transcripts of interviews with participants. ¹³ Research team members identified content relevant to the research question individually. As a group the identified information was reviewed to determine themes. A coding worksheet was then used for each transcript to keep track of quotes for each category or sub-category. Category summaries from the coding worksheets using Microsoft were created and reviewed collaboratively for data synthesis. Participants were not provided transcripts and no feedback was collected.

Participant responses were included for any given question only if they included a response at both time points. If a response was not provided at both timepoints (eg, someone declined to answer question 15 at 12-18 months post transplant), their response was excluded from analysis for this question, as it would not inform whether or not needs shifted across timepoints.

Rigor and Transparency

We have worked to complete this study with rigor and transparency and have described the pillars of rigor in our work below:

Credibility was ensured by using a multidisciplinary clinical team, an experienced research team and involving patients in the testing of the questionnaires.

Transferability, dependability and transparency were ensured through detailed documentation of the study procedures, data analysis strategies and long-term storage of all data collected for the study.

Confirmability of ensuring the findings are grounded in data, the researched was shared with through presentation of the results to peers, collaborative review of the data and manuscript amongst the authors.

Results

No participants in this study experienced graft failure during follow-up.

Quantitative Data

Descriptive statistics for each question of the LNI can be found in Table 2.

Table 2.

Rating by Participants in Phase 1 and Phase 2 (Was the Same for Both Phases Unless Otherwise Noted).

Rated as “not important at all” or “not very important” by >65% of participants	≤65% of participants rated as “important” or “not important”	Rated as “a little important” or “very important” by >65% of participants
Having a baby Use of recreational drugs (marijuana, IV drugs, cocaine, pain killers) Use of alcohol* Use of tobacco	What to do with my dialysis access Using alternative therapies (herbal medicine, chiropractor, acupuncture, supplements, massage therapy, naturopaths) Use of nutritional supplements (protein powder, Boost or Ensure) Sexually transmitted infections (herpes, chlamydia, HIV, hepatitis, gonorrhea) Going back to work, school or volunteering Government income programs (Ontario Works, Ontario Disability Support Program, Canada Pension Plan, Old Age Security) Return to sexual activity Changes in appearance Feeling about living with someone else’s kidney Social support after transplant (family, friends, cultural and spiritual communities) Managing stress	When to get urgent medical help When to see my transplant doctor When to see my family doctor Feeling included in decisions about my health Completing blood and urine tests Follow-up appointments after transplant (when, how long, what do I need to bring?) Understanding blood test results and what they mean How to take transplant medicine properly How to handle a missed dose of transplant medicine? Side effects of transplant medicine Using non-transplant medicine (blood pressure pills, water pills, heart medication, blood thinners) How to handle transplant medicine while traveling (time change, airport security) Using over-the-counter medicine (Tylenol, cold and cough, sleep, allergy) Paying for transplant medicine (private or public insurance) Interactions between food and transplant medicine How to prevent food poisoning Preventing or managing high cholesterol Amount of fluid I should drink daily Preventing and managing diabetes Dental care after transplant * Eye care after transplant Vaccinations (flu shot, pneumonia, travel) Sun protection Preventing infection Learning about traveling with your kidney transplant Energy levels Mood changes after transplant Changes in family roles or social roles Managing stressPotential complications from your transplant Kidney transplant failure Signs and symptoms of rejection Signs and symptoms of infection

^*Significant at P ≤ .05.

Participants in this study reported the following countries of origin: China, Jamaica, Italy, Poland, Iran, Canada, Mexico, Sri Lanka, and Trinidad. Participants in the study identified the following ethnicities: Back/Afro Caribbean, Asian, Caucasian, Indian Subcontinent, Middle Eastern, and Hispanic.

Education topics after transplant were compiled to develop the LNI. Topics included managing your health, medications, eating habits, life after transplant, emotional wellbeing, and dealing with complications. Full question details can be found in Supplementary 1.

For question 29, asking for level of importance regarding the use of alcohol, a significant effect (P = .016) was revealed, demonstrating a shift in median rating of “not important at all” to “not very important” over time. Of the 18 participants who responded to this question for both phases of this study, 7 transplant recipients assigned greater importance to this topic during the 12- to 18-month period post-transplant, and 11 participants reported no difference in importance between either time period studied.

A significant effect (P = .031) was also revealed, shifting the median rating of post-transplant dental care from “a little important” to “very important.” Of the 19 participants who responded at both time periods, 6 transplant recipients assigned greater importance to this topic, whereas 13 participants did not report a difference in importance for this topic from the 3- to 6-month time period.

All other questions in the LNI showed no significant effect of time found on participant responses.

Of the 48 questions asked in the LNI, 48% (23/48) had at least 1 answer missing—details can be found in Table 3. Full responses were provided by 45% (9/20) of participants. At least 1 question in the LNI was not responded to by 50% (10/20) of the participants. Of the 48 questions, a total of 10 questions had at least 1 participant not providing an answer to the same question on either survey timepoint. Of note, 1 participant did not answer a large number of questions 31% (15/48). This participant was the sole non-responder on only 1 question and did not significantly impact the number of questions with at least 1 answer missing. This supports that there was variety and not necessarily a pattern in the non-responses.

Table 3.

Non-Responses for LNI at Timepoint 1 (Baseline 3-6 Months Post-Transplant) and Timepoint 2 (12-18 Months Post-Transplant).

Question	Topic	Number of non-responses	Participant numbers
Managing your health
1.	When to get urgent medical help	0
2.	When to see my transplant doctor	0
3.	When to see my family doctor	0
4.	Feeling included in decisions about your health	1	Timepoint 2: 3
5.	Completing blood and urine tests	0
6.	Follow up appointments after transplant (when, how long, what do I need to bring)	0
7.	What to do with my dialysis access	5	Timepoint 1: 3, 8, 20 Timepoint 2: 8, 12
8.	Understanding blood test results and what they mean	0
Medications
9.	How to take transplant medicine properly	0
10.	How to handle a missed dose of transplant medicine	0
11.	Side effects of transplant medicine	0
12.	Using non-transplant medicine (blood pressure pills, water pills, heart medication, blood thinners)	0
13.	How to handle transplant medicine while traveling (time change, airport security)	0
14.	Using over the counter medicine (Tylenol, cold and cough, sleep, allergy)	0
15.	Using alternative therapies (herbal medicine, chiropractor, acupuncture, supplements, massage therapy, naturopaths)	2	Timepoint 1: 4, 20
16.	Paying for transplant medicine (private or public insurance)	2	Timepoint 1: 3, 20
Eating habits
17.	Interactions between food and transplant medicine	0
18.	How to prevent food poisoning	1	Timepoint 1: 11
19.	Preventing or managing high cholesterol	1	Timepoint 2: 19
20.	Use of nutritional supplements (protein powder, Boost or Ensure)	2	Timepoint 1: 4, 20
21.	Amount of fluid I should drink daily	0
22.	Preventing and managing diabetes	1	Timepoint 2: 3
Life after transplant
23.	Having a baby	7	Timepoint 1: 3, 19, 20 Timepoint 2: 3, 11, 19, 20
24.	Sexually transmitted infections (herpes, chlamydia, HIV, hepatitis, gonorrhea)	2	Timepoint 1: 20 Timepoint 2: 20
25.	Going back to work, school or volunteering	4	Timepoint 1: 4, 5, 20 Timepoint 2: 20
26.	Government income programs (Ontario Works, Ontario Disability Support Program, Canada Pension Plan, Old Age Security)	4	Timepoint 1: 15, 20 Timepoint 2: 19, 20
27.	Physical activity after transplant	0
28.	Use of recreational drugs (marijuana, IV Drugs, cocaine, pain killers)	3	Timepoint 1: 4, 20 Timepoint 2: 20
29.	Use of alcohol	2	Timepoint 1: 4, 20
30.	Use of tobacco	4	Timepoint 1: 4, 20 Timepoint 2: 19, 20
31.	Return to sexual activity	2	Timepoint 1: 20 Timepoint 2: 19
32.	Dental care after transplant	0
33.	Eye care after transplant	0
34.	Vaccinations (flu shot, pneumonia, travel)	0
35.	Sun protection	0
36.	Preventing infection	0
37.	Changes in appearance	2	Timepoint 1: 4, 19
38.	Learning about traveling with your kidney transplant	0
39.	Energy levels	0
Emotional well-being
40.	Mood changes after transplant	2	Timepoint 1: 4, 20
41.	Changes in family roles or social roles (returning to work, household responsibilities, relationships)	3	Timepoint 1: 4, 20 Timepoint 1: 20
42.	Feeling about living with someone else’s kidney	2	Timepoint 1: 15, 20
43.	Social support after transplant (family, friends, cultural and spiritual communities)	1	Timepoint 1: 4
44.	Managing stress	6	Timepoint 1: 4, 6, 12, 20 Timepoint 2: 7, 20
Dealing with complications
45.	Potential complications from your transplant (developing diabetes, cancer, frequent visits to the hospital)	0
46.	Kidney transplant failure (return to dialysis, possible second transplant)	0
47.	Signs and symptoms of rejections	0
48.	Signs and symptoms of infection	1	Timepoint 2: 4

Upon further review of the non-answered questions, we found the following topics represented the highest percentage of non-answered questions: stress, dialysis access, having a baby, tobacco, government income, and going back to school.

Qualitative Data

Our qualitative analysis uncovered 3 themes.

Theme 1: Patient access to a trustworthy health care team needs to support their learning

Many patients shared that their access to the transplant clinic staff helped to support their learning needs. They explained that having access to staff and open communication allowed them to identify their individual education needs, which were in addition to resources provided in clinic. Patients shared that their relationships with clinicians, and feeling confident that they could reach their team when needed, allowed them to self-direct the timing of education:

And I know personally the most important thing for me is that I don’t have to worry about if there is anything I need. The only thing I do is just look up the clinic number, I call, and I always get a phone call back. So, if there are any concerns I have, they’re resolved. (Participant 16)

Patients described valuing a comprehensive understanding behind their care plan. Patients also described that having a trusting relationship that they were receiving accurate information, supported their learning needs and allowed them to feel confident in their health:

I trust the medical staff so if they say we’re going to do this, they’ll explain why, and I trust their judgement on it. (Participant 1)

I think the first thing, put your confidence in the medical team, and I think that’s the first step. Got to hand it to them, they know what they’re doing. (Participant 3)

I basically do what the doctors tell me. You know, they know what is best. It is important to me to have an explanation of why we are going to change something. I just like to know why. (Participant 5)

Across many interviews, the importance of allied health as well as education tools were identified in supporting patients’ attitudes toward managing their health. Patients identified that their ability to develop resilience, and determine their gaps in knowledge was enhanced by their relationship with their support system including allied health, family, and the transplant community:

Whenever I’m going around, they point me right. If I’m going on the wrong track, they put me back on and they correct me and say no this is the reason why and you can check things like that. So, I’m pretty happy with my team, very happy should I say. (Participant 3)

Patients shared specific aspects that supported their learning needs such as the ability to see test results to help them understand their medical condition and health status. Access to dietitian, social worker, and pharmacist provided them with confidence to manage their kidney transplant:

I think patients need to see their monthly blood work so that they too can keep on top of it. (Participant 7)

I really try my best, I don’t want to have any bad experience with the kidney. I’m trying to keep it healthy so I think I’m doing very well with that part. The whole process is challenging. It’s good to have the support and I don’t just get it from my family and friends, I actually feel it from the clinic. The doctors and nurses, the dietitians, everybody. They’re really helpful. (Participant 9)

Theme 2: Patient support system improves attitudes toward managing their health

Patients felt that their community enhances their care and learning experiences. Patients shared that their support system that may encompass family and or friends helps to develop self-reliance and support their transition after transplant to allow them to recover. A strong support system is important after transplant as it can help facilitate recovery and well-being. Support systems including caregiver(s) can attend appointments, help with grocery shopping or cooking, and provide emotional support:

My girlfriend who is very supportive over everything. She comes to all the appointments; she actually even came to dialysis before. I also have two kids who are both very supportive; they like to be kept in the loop with everything that goes on. So, I can honestly there have been no issues at all. (Participant 1)

I’m flabbergasted by the amount of support that I have. I’m blessed that I have so many of the friends and family that are just totally invested and always checking in to see how I’m doing and you know that makes all the difference, it really does. (Participant 14)

Patients identified that social media, walks, community organizations, and support groups were helpful to navigate shared experiences:

I also feel it is important to hear other people’s experiences of post-transplant and what sort of challenges or issues they had with their medications and how they effected them. (Participant 14)

Theme 3: Patient reported challenges post-kidney transplant

Patient reported challenges post-transplant revolved around 3 realms: emotional, physical, and financial.

Patients shared in the emotional realm that “because I know that this kind of surgery was a major one. And seeing that it’s a new organ going into a different body, there would be a bit of an adjustment” (Participant 7). Supporting their emotional health immediately after transplant and on an ongoing basis was highlighted by patients’ comments as important to their educational needs.

Physical and financial changes occur as patients begin to recover and return to healthy lifestyles. Patients identified the following realms for learning opportunities which are covered in the LNI:

Finding employers that would understand that I’m not going to be healthy 100% of the time and looking at me as a young person they can’t understand that I’m going through kidney failure or have a kidney disease of any kind. Because they all look at you like you’re a healthy guy because it doesn’t show on the outside so you know it was a huge barrier for employment. (Participant 5)

I had a problem with my coverage for my medicine. I found out that my employer’s program had a limit and I didn’t know that before so I started worrying and you know when you are taking medication that you depend on for that kidney to work, I worried quite a bit. I remember telling one of the nurses here and right away someone called me back. And I spoke to the social worker I remember, and we resolved the situation, within the same day actually, it was resolved. (Participant 16)

Discussion

This study aimed to explore the learning needs of kidney recipients between 3 and 18 months post-transplant. The majority of participants identified that most topics (33/48) in the LNI were either “a little important” or “very important” to daily living with a kidney transplant and that these same topics consistently stayed important or very important at both time points. Education topics covered in the 3 to 6 months post-transplant period remained important and relevant for those who had their transplant for more than a year.

This study found that kidney transplant recipients felt that most topics of patient education were valuable. As these topics range widely, a multidisciplinary team extending beyond physicians and nurses to include professionals such as pharmacists, dietitians, and social workers can best address patient needs. These professionals are content experts in each of their subject domains and can provide the best possible education on those topics. Health discipline team members are a valuable part of the team and play a key role in helping patients manage their chronic disease.^2,14 This study also showed that building a sense of community with transplant clinics and transplant communities can support patient learning experiences. This finding aligns with the clinical practice guidelines and previous literature, which highly recommend that kidney transplant teams be inclusive of all members of the interprofessional team to enhance the education post-transplant.^15,16

There was heterogeneity among the patients in their assessment of the importance of certain topics. At time point 2, some participants rated topics such as what to do with their dialysis access, going back to work, and returning to sexual activity as very important. However, other participants rated these as less important. These findings can be explained by the sample characteristics. Most participants were over the age of 60 and topics such as having a baby, use of recreational drugs, and going back to work may be less important. However, the younger participants often rated these items as more important. Other inventory items, such as what to do with dialysis access may be rated differently depending on whether a patient had a pre-existing condition.

Contrary to our initial hypothesis, it was discovered that there was little change in participants’ learning needs and interests between the first and second time points of the study. Previous studies have demonstrated that topics such as rejection and infection are important for patients to self-manage their transplant^3,6,17 and are considered highly important to recipients in the first 18 months post-transplant. Our results confirm previous findings for these key topics. However, regarding other topics, we hypothesized that the learning needs of post-kidney transplant patients would change over time. Several factors could explain this unexpected finding.

First, it is possible that the 2 periods evaluated in our study were not sufficient to demonstrate the evolution of learning needs and interests. Instead, with a greater gap between the 2 time points, it is possible that more changes in patients’ learning needs will be observed. Further research would elucidate whether learning needs change beyond 12 to 18 months after transplantation.

Second, the second phase of data collection coincided with the COVID-19 pandemic, with time point 2 data collected from November 2020 to March 2021. From March 2020 onward, the usual post-transplant education processes were altered because of pandemic response. Only patients in the immediate postoperative period and those with acute health issues were seen in-person at the transplant clinic. Education enhances knowledge and skills to assist patients in managing their chronic disease. ¹⁸ The pandemic halted the education processes that would typically occur in the clinical setting. Patients may have had a change in therapeutic relationships as the care models were shifted to virtual. Education related to preventive health care and patient-specific needs may not have been a priority, which in turn could have impacted participants’ learning and responses to the LNI. Some study participants may have also felt that they learned little during the 2 intervening time points, and therefore their needs are “stuck” at the 3 to 6 months’ stage. It is possible that if the participants experienced typical educational routines, their needs would have shifted more significantly as they improved their knowledge in the intervening 6 to 12 months. Alternatively, the pandemic may have shifted patients’ learning needs elsewhere, as post-transplant patients being immune compromised may have been focusing on the increased risk of severe COVID-19 infection and vaccination availability, which were not captured in the LNI. However, the pandemic highlighted that alternative methods of communication and education do work and that patients’ relationship with the transplant center is an important factor in their learning and experience.

Two topics shifted in importance between 2 time points: (1) the use of alcohol (shifted from “not important at all” to “not very important”) and (2) dental care after transplant (shifted from “a little important” to “very important”). Most patients on dialysis are on fluid restriction and as such any alcohol consumption would be included within this limited daily fluid intake. As time passes post-transplant, transplant recipients may look to return to activities they participated in prior to dialysis, especially with lifted restrictions on daily fluid intake. Given this, participants may have reported a greater interest in the use of alcohol during the 12- to 18-month period post-transplant. However, it should be noted that, overall, the use of alcohol was rated low in terms of importance to participants for education at both time points post-transplant. In terms of dental care, patients with chronic kidney disease have poor dental health and are less likely to adhere to dental visits than healthy patients.^19-21 Dental health in dialysis patients is poor and complex to manage owing to infrequent dental visits, poor dental habits, and multiple comorbidities. ¹⁹ The shift from little importance to very important can be explained by the fact that participants feel better post-transplant, no longer have the constraints of frequent dialysis, and can now prioritize other areas of health, such as dental health. This sentiment was also highlighted throughout interview themes with participants identifying types of challenges after kidney transplant include emotional, lifestyle, physical and financial. While specifics of each of these challenges may differ depending on the patient, the LNI provided an opportunity to capture common concerns that can be addressed when and if required.

Most education topics (ie, rejection, infection) covered in 3 to 6 months post-transplant continued to be important for those that have had their transplant for more than a year suggesting the need for ongoing education post-transplant.

Limitations

There were a number of limitations that presented themselves during the data collection phase as well as the data analysis process. Convenience sampling was used to obtain the data. Although our sample population had similar characteristics as transplant recipients to the overall clinical population, demographics such as education level and household income may not have. A larger sample size may have changed the narrative of our findings. We also selected recipients who self-identified as able to read and speak English. Information pertaining to education and income levels is not currently collected in the transplant electronic database; therefore, it is difficult to determine whether our sample was an accurate representation of the transplant population at our center or the post-kidney transplant population in general.

Upon analysis of the LNI, it was found that some participants chose not to indicate the level of importance of some learning topics. One could speculate that these participants could have found that the topics listed were either not applicable to them (ie, smoking may not be important to recipients who did not smoke before transplant) or the survey instructions were unclear. There was no follow-up with participants following the completion of the LNI; therefore, there was no way to explore the reason why those participants left some items blank.

Conclusion

Our study was conducted to address gaps in the literature regarding the learning needs of post-kidney transplant recipients. Using a 48-item validated LNI, this study showed that education topics reviewed with recipients 3 to 18 months post-transplant are relevant and meaningful to most transplant recipients.

Practical Implications and Future Considerations

The information collected in this study can be used to inform patient education processes of kidney transplant programs, especially in the medium-to long-term post-transplant times. The findings of this study suggest the following:

1. The involvement of a multidisciplinary team, including nurses, pharmacists, social workers, and dietitians, is important given the wide range of topics identified as important by participants. These multidisciplinary professionals provide thorough expertise on the full range of topics. Since the beginning of this study, our clinic has expanded the allied health role to include a dietitian on staff as well as increased pharmacist availability in clinic based on patient comments. The importance of allied health roles were highlighted in patients comments. It is important that health professionals provide information that is not only accurate and reliable, but also tailored to be relevant to the patient’s learning needs.

2. Education should be provided on a continual basis for at least 18 months, as patients identify most health topics as important for self-care until that period. The lessons learned from this study allowed staff to create an education pathway for patients post-transplant which includes initial one-on-one teaching in their first post-transplant clinic appointment followed by a group education session that includes identified topics from the LNI at 6 to 8 weeks post-transplant and can be provided to patients in person or virtually. The LNI and interviews highlighted the importance of continued learning among post-transplant patients as well as opportunities for in the moment education when health or life changes.

3. The identification of what education topics are important must come from patients and families themselves. While certain topics (eg, rejection, infection, medication taking) are considered important by the majority of patients, other topics such as sexual health and return to work showed significant inter-patient variability. This allowed staff to create a customized education booklet provided to patients after transplant with answers to common questions. An example can be found in our hospital Patient Education Online Health Library (available at https://smh.andornot.com/en/permalink/stm1483) as well as further education materials included on our program website (https://kidney.to/).

As patients are living longer post-transplant, exploring patients’ experiences and their learning needs more than 2 years post-transplant would provide helpful insight into the patients’ journey post-transplant, allowing transplant teams to better meet the needs of their patients. Having adaptable resources and multiple methods of communication was a lesson learned from this study and has provided us an opportunity to meet our patients’ education needs for lifelong success post-transplant.

Future research is needed in the development and use of virtual platforms to promote learning and connection between recipients and their health care team, as well as connection with peers living similar experiences, which may prove useful tools. ²² In addition, future research in the area of the learning needs of women, young adults, or visible minorities may also prove useful if programs are looking to develop patient education to meet a specific population or review the quality of their current patient education materials.