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Original Clinical Science—General

Perceptions, Barriers, and Experiences With Successful Aging Before and After Kidney Transplantation: A Focus Group Study

Van Pilsum Rasmussen, Sarah E. BA1; Warsame, Fatima BA1; Eno, Ann K. BS1; Ying, Hao MHS1; Covarrubias, Karina BS1; Haugen, Christine E. MD1; Chu, Nadia M. PhD, MPH1; Crews, Deidra C. MD, ScM2; Harhay, Meera N. MD, MSCE3; Schoenborn, Nancy L. MD, MS4; Segev, Dorry L. MD, PhD1,5; McAdams-DeMarco, Mara A. PhD1,5

Author Information
doi: 10.1097/TP.0000000000002848

Abstract

INTRODUCTION

Patients with end-stage kidney disease (ESKD) are living longer due to improved dialysis survival and graft survival after kidney transplantation1 and are now likely to age into older adulthood.2 Furthermore, 51% of patients who initiate dialysis are ≥65 years of age,2 and kidney transplantation is a growing treatment option for this population.1 Yet, older adults face unique and well-documented challenges while undergoing dialysis,3,4 pursuing transplantation,5 and maintaining posttransplant health.6 These unique challenges are likely the result of age-related conditions, such as frailty,7 cognitive impairments,4,8 dementia,9 falls,10 early hospital readmission,11-13 and delirium,9 conditions that are more common among patients undergoing dialysis7 than transplant recipients and often improve after transplantation.14,15

Successful aging is a multidimensional, gerontologic construct that describes the heterogeneous experiences and abilities of aging adults.16 The construct distinguishes between usual aging, in which the effects of aging are detrimental, and successful aging, in which the effects of aging are mitigated.16 Successful aging has historically been defined by 3 factors: the ability of an individual to avoid disease and disability, maintain physical and cognitive function, and engage in productive and social activities as they age.17,18 Under this definition, successful aging requires aging without a significant burden of disease, and an adult with ESKD would likely be unable to age successfully.19 However, as chronic diseases are increasingly common in older adults, this requirement has been the source of some debate.17-23 The concept of successful aging has been expanded and adapted by several fields to operationalize the definition for unique patient populations, such as those with HIV infection, diabetes, or disabilities.20-26 It has been suggested that adults with ESKD may face unique challenges in aging successfully19,27 but their perceptions of, barriers to, and experiences with successful aging are unclear and likely differ based on whether they have received a kidney transplant.

As the population of older adults with ESKD continues to grow and older candidates pursue transplantation, it is important to understand patient views on successful aging and whether they change after kidney transplantation. In this study, we conducted focus groups among patients with ESKD, including transplant candidates and recipients. The aims of this study were to identify common themes regarding the perceptions of, barriers to, and experiences with successful aging in this population and identify differences in themes before and after transplantation.

MATERIALS AND METHODS

Study Design

Focus groups were chosen to allow participants to engage in discussion with each other. As the use of a successful aging framework is novel in the ESKD population, we aimed to understand the concept from the perspective of the patients. A major benefit of focus group studies is that participant’s build off of each other’s responses and share ideas and experiences that may go unremarked upon in an individual interview setting.28 Given our goal of assessing barriers to and experiences with successful aging, we chose a focus group methodology to facilitate in-depth group discussion on these topics.

The focus group discussion guide was developed by the study team based on a review of the literature on successful aging, ESKD, and transplantation in older adults (Appendix 1, SDC, http://links.lww.com/TP/B767). The focus groups aimed to assess perceptions of successful aging, barriers to aging successfully, and experiences with aging among transplant candidates and recipients. Focus groups with transplant candidates and recipients were held separately to increase participant comfort discussing their experiences with dialysis and/or transplantation. The Johns Hopkins Institutional Review Board approved the study (IRB00090487), and all participants provided written informed consent. This research is in adherence with the Declaration of Helsinki. Study reporting is based on the Consolidated Criteria for Reporting Qualitative Health Research.29

Participant Selection and Setting

Participants were eligible if they were enrolled in a parent prospective cohort study on ESKD, frailty, and aging, as has been previously described,7,30,31 were aged ≥50 years, English-speaking, and resided in the greater Baltimore, MD area. Adults aged ≥50 years were eligible as we aimed to assess experiences of adults at all stages of the aging process, and due to accelerated aging among ESKD patients that leads to signs of aging in adults of all ages.32,33 For the focus group study, potential participants were classified in 2 groups based on their status at the time of the focus group: (1) kidney transplant candidates, both listed and unlisted, and (2) kidney transplant recipients. Within those groups, purposive sampling was used to ensure a variation of demographics (age, sex, race) and clinical characteristics (dialysis treatment modality, time since transplantation). We aimed to have up to 7 participants in each focus group meeting. Meetings were held on various weekday evenings. Participants were recruited by phone by a member of the study team (F.W.) and were given a $25 gift card for their participation. Written informed consent was taken at the time of the focus group meeting by members of the study team (S.E.V.P.R., A.K.E., and F.W.).

Data Collection

We conducted a qualitative study based on ten 45- to 90- minute focus groups (5/2017–11/2017) of kidney transplant candidates. Nonclinical researchers trained in qualitative data collection (S.E.V.P.R., F.W., and A.E.) conducted in-person focus groups to explore familiarity with, perceptions of, barriers to, and experiences with successful aging (Appendix 1, SDC, http://links.lww.com/TP/B767). Participants were asked to keep the discussions confidential, and were told they did not have to use their real name in the course of the discussion. Participants engaged in a guided discussion but were encouraged to explore and clarify shared perspectives without being limited to answering the facilitator’s questions. Focus groups occurred privately in a conference room and were audio recorded; recordings were transcribed by trained members of the research team. Field notes recording contextual details were also recorded.

Medical and demographic information on focus group participants was obtained from the parent prospective cohort study. In the parent prospective cohort study, frailty was measured using the Fried physical frailty phenotype,34 lower extremity impairment was measured with the Short Physical Performance Battery,35 health-related quality of life (HRQOL) was assessed using a global subjective question from the Kidney Disease Quality of Life measure,36 cognitive function was assessed using the modified Mini-Mental State Exam,4 health literacy was assessed using the Brief Health Literacy Screen,31 functional dependence were assessed using activities of daily living and Instrumental Activities of Daily Living,7 and comorbidities were assessed using the Charlson comorbidity index (adapted for ESKD).31

Data Analysis

Discussion transcripts were proof-read and imported into NVivo (version 11; QSR International Inc., Burlington, MA), a software for qualitative data analysis. Using a qualitative descriptive approach and the analytical process of constant comparison,37-40 2 independent coders, F.W. and S.E.V.P.R., read the transcripts and inductively identified themes and subthemes relating to successful aging. Differences in coding of themes were reconciled by consensus. Participant demographics were calculated using Stata 14.0/MP for Linux (College Station, TX). Results from the analysis were organized and presented with input and discussion from the other members of the study team, including several transplant and ESKD clinicians. Of 104 codes derived from the 10 focus group meeting transcripts, 94 were first derived from the first 4 focus group meetings, suggesting that thematic saturation was reached.41

RESULTS

Study Population

Of the 363 candidates and recipients called, 117 were reached (32% of those called), 63 agreed to participate (54% of those contacted), and 39 attended a focus group meeting (62% of those who agreed to participate). Of participants, 19 (49%) were candidates and 20 (51%) were recipients. Not all candidates were listed at the time of the focus groups; only 10 (53%) were actively listed for transplantation. The average focus group of candidates had 5 participants and the average focus group of recipients had 3 participants.

Of the 39 participants, the mean (SD) age was 64.8 (7.5) (Table 1). Overall, 51% were African American, 74% were unemployed, 36% were females, 36% had received a college degree, 23% earned <$50 000 annually, and 10% had limited health literacy. In addition, 21% were frail, 28% had poor HRQOL, 15% were cognitively impaired, and 41% had lower extremity impairment. The median (IQR) Charlson comorbidity index score was 1 (0–3). Transplant candidates were less likely to be employed and more likely to be frail, have poor HRQOL, have lower extremity impairment, have limited health literacy, and more comorbidities than the recipients.

TABLE 1.
TABLE 1.:
Characteristics of focus group participants discussing successful aging with end-stage kidney disease, by whether they were candidates or recipients (n = 39)

Themes on Successful Aging Before and After Kidney Transplantation

Six themes related to successful aging were identified: familiarity with successful aging, perceptions of successful aging after an ESKD diagnosis, barriers to successful aging among ESKD patients, experiences with successful aging among transplant candidates, experiences with successful aging among transplant recipients, and suggested interventions. Some themes encompassed multiple “subthemes” that were identified by participants. Each theme will be discussed in greater detail below.

Familiarity With Successful Aging

Participants generally were unfamiliar with the formal concept of successful aging, but did express an awareness of the idea that some people age more successfully than others: “I have not heard of it as successful aging, but there is a number of different components of things you can do to be able to be stronger and make it through to older age and not be debilitative (posttransplant group 3).” Despite an unfamiliarity with the formal definition of successful aging, many participants identified people in their lives who they believed were aging successfully. Participants described these “successful aging role models” as having “lived a beautiful life, no complaints (pretransplant group 1)” and “if I could follow in her footsteps, I would be grateful (pretransplant group 1).” Some participants associated aging successfully with an absence of illness.

The perceptions of and barriers to successful aging identified by participants were consistent across candidates and recipients, while some experiences with successful aging were unique to those that had received a transplant (Figure 1).

FIGURE 1.
FIGURE 1.:
Thematic Schema: successful aging among kidney transplant candidates and recipients. ESKD, end-stage kidney disease.

Perceptions of Successful Aging After an ESKD Diagnosis

We identified 3 sub-themes related to the perceptions of successful aging after an ESKD diagnosis that were common among candidates and recipients: (1) accepting aging-related limitations, (2) adaptation to maintain autonomy, and (3) pursuing health promotion (Table 2).

TABLE 2.
TABLE 2.:
Perceptions of successful aging after an ESKD diagnosis: illustrative quotations

Accepting Aging-related Limitations

Participants described the importance of accepting aging-related limitations without letting limitations take over their daily lives. They described adjusting their approach to activities that they used do regularly, such as dancing and housework, and expressed some level of resignation to the inevitability of these adjustments.

Adaptation to Maintain Autonomy

Participants described adaptions that allow them to maintain autonomy, especially when ESKD-related care threatens to limit their independence, as will be described below. Some of these adaptions included pursuing new activities in retirement, ensuring independence in transportation, and taking some control of their own healthcare needs.

Pursuing Health Promotion

Participants emphasized the importance of being proactive about one’s health while aging with ESKD. In particular, participants described the importance of following their healthcare providers’ recommendations and maintaining general health through physical activity and a healthy diet.

Barriers to Successful Aging Among Kidney Transplantation Candidates and Recipients

We identified 2 sub-themes related to the barriers to successful aging that were common among candidates and recipients: (1) yielding to ESKD-related limitations and (2) an altered perception of independence (Table 3).

TABLE 3.
TABLE 3.:
Barriers to successful aging among kidney transplant candidates and recipients: illustrative quotations

Yielding to ESKD-related Limitations

Participants expressed a sense of resignation to the limitations imposed by their ESKD. They described lifestyle adaptations that reflected changes in many aspects of their lives including professional and leisure activities; one participant called an ESKD diagnosis “a life-altering adjustment (pretransplant group 1).” Participants described having to adjust the expectations they have for themselves which some attributed to an ESKD-related decrease in energy.

Altered Perception of Independence

Many of these ESKD-related limitations stemmed from an altered perception of independence following their ESKD diagnosis. As one participant described, “You get frustrated for a while that you can’t do what you used to be able to do (posttransplant group 3).” This limited independence affected participants’ abilities to travel and complete regular tasks such as grocery shopping. Another common barrier to successful aging was the anxiety that the participant was burdening others with their ESKD, especially caregivers and loved ones. Participants expressed guilt and a feeling of selfishness regarding their need for support.

Experiences With Successful Aging Among Candidates

We also identified 4 unique sub-themes regarding the experiences of successful aging before kidney transplantation: (1) dialysis as limiting successful aging, (2) remaining persistent in ability to successfully age, (3) primacy of pursuing transplantation, and (4) contentment with remaining on dialysis in the face of mortality (Table 4).

TABLE 4.
TABLE 4.:
Experiences with successful aging among kidney transplant candidates: illustrative quotations

Dialysis as Limiting Successful Aging

Candidates described dialysis as a hindrance to living their normal life. Many participants reported that dialysis limited their ability to participate in “normal” activities such as employment, but also from participating in activities that would facilitate their successful aging. Thus, dialysis was seem as a significant barrier to successful aging.

Persistence in Ability to Age Successfully

Despite these challenges, some participants remained persistent in their ability to age successfully. Participants expressed the importance of trying to live life as normally as possible and to do what it takes to pursue successful aging.

Dialysis as a Means to Transplantation

Some candidates saw dialysis as a means to transplantation, which they believed would allow them to age more successfully. In describing the limitations of dialysis, many participants viewed it as a temporary state and expressed optimism in the ability of transplantation to allow them to return to life as normal and age more successfully.

Contentment With Remaining on Dialysis in the Face of Mortality

Others who were no longer pursuing transplantation were content remaining on dialysis. These participants expressed a sense of resignation to the limitations of dialysis. Participants on dialysis also described the mortality of their peers, particularly those who attended the same dialysis sessions, as a reminder of their own mortality.

Experiences With Successful Aging Among Recipients

Recipients had different perspectives on the potential for successful aging than candidates. We identified 3 sub-themes regarding the experiences of successful aging following transplantation: (1) privilege of receiving a kidney transplant and return to normalcy, (2) enhanced ability to age successfully, and (3) negotiating the risks of transplantation (Table 5).

TABLE 5.
TABLE 5.:
Experiences with successful aging among kidney transplant recipients: illustrative quotations

Privileged to Receive a Kidney Transplant and Return to Normalcy

Recipients were also clear in their acknowledgment of the privilege of receiving a transplant. Recipients found that the transplant allowed them to, in most regards, return to their normal, predialysis lives: “The transplant gives you back your life. Totally (posttransplant group 4).”

Enhanced Ability to Age Successfully

This return to normalcy allowed recipients to think about the future, and aging, in ways they hadn’t before. Participants explained that posttransplant they were able to make plans for the future and better prepare themselves for older age.

Negotiating the Risks of Transplantation

However, some recipients recognized the risks and other lifestyle adjustments involved in undergoing transplantation, and they balanced these against the risks and limitations of staying on dialysis. Participants were particularly challenged by immunosuppressive regimens and the long-term care required to maintain their transplant.

Suggested Interventions

We identified 2 subthemes that describe the suggestions participants offered for ways in which the dialysis and transplant systems could promote successful aging among candidates and recipients, including: (1) building community with fellow adults with ESKD through support groups and (2) more thoughtful health care for aging adults (Table 6).

TABLE 6.
TABLE 6.:
Suggestions for interventions to support successful aging among older adults with ESKD

Support Groups for Fellow Adults With ESKD

Participants expressed a desire for more support from their healthcare providers when navigating and ESKD diagnosis and treatment. In particular, participants described feeling “vulnerable” and “terrified” and requested more support and preparation for lifestyle and dietary adjustments when transitioning to dialysis.

More Thoughtful Health Care for Aging Adults

Participants also desired more personal interactions and compassionate and appropriate language when discussing age- and ESKD-related limitations. Participants expressed more comfort with physicians similar to them in age.

DISCUSSION

In this focus group study of kidney transplant candidates and recipients, participants expressed a desire to age successfully despite the challenges and limitations imposed by ESKD. While perceptions of and barriers to successful aging were similar among candidates and recipients, the experiences with successful aging differed by whether they received a transplant. Before transplantation, participants struggled with the limitations of dialysis; some viewed transplantation as an opportunity to age more successfully, while others expressed contentment with dialysis and were resigned to its drawbacks. In contrast, transplant recipients were generally more optimistic about their ability to age successfully, seeing their transplant as a facilitator of aging successfully that dialysis would not have allowed. Despite the overall optimism regarding successful aging expressed by transplant recipients, some recipients also described challenges associated with maintaining their graft.

The general perceptions of successful aging with ESKD did not differ between candidates and recipients. Participants in this study described the importance of adaptations to maintain independence and a high quality of life, while recognizing and respecting the limitations imposed by ESKD. This technique has been well documented in prior studies on successful aging in adults with chronic disease.20,21,27 A case study of a woman with chronic kidney disease describes successful aging as a person’s point on a continuum of the complexity of adaptations to their disease.27 Other studies of older adults with diabetes emphasize the importance of adaption, independence, social support, and health promotion in the ability to age successfully with a chronic disease.20,21 Similarly, some barriers to successful aging were common among candidates and recipients. The ESKD-related lifestyle limitations of dialysis and of immunosuppression, as well as the impact of those factors on their independence, were important to the participants. Support groups for adults with ESKD were suggested as a way to reduce the barriers to successful aging in this population.

Experiences with successful aging differed between candidates and recipients, such that recipients had a more positive view of successful aging and saw their transplant as a facilitator of aging successfully that dialysis would not have allowed. Similarly, a prior interview study found that older kidney transplant recipients experienced improvements in energy and quality of life, while being challenged by slow recovery and ongoing treatment burden.42 While transplantation offers the potential for successful aging and an opportunity to approach aging with more optimism, older recipients should be supported in addressing the challenges of transplantation, especially medication management.

Among participants undergoing dialysis, there was consensus that the decreased productivity associated with dialysis treatment precluded them from aging successfully. Given that some transplant recipients expressed uncertainty about being prepared to go back on dialysis in the event of graft loss, there is a need for adequate support as patients exercise their autonomy to weigh the benefits and disadvantages of dialysis treatment in older age. However, some participants remarked that they would unequivocally return to dialysis because they perceived its life-prolonging capacity. This dichotomy is consistent with a previous focus group study of kidney transplant recipients in Australia, in which some older transplant recipients decided against future dialysis treatment, despite the knowledge or acceptance of this decision among family members.42 Furthermore, our study builds on the findings of a recent study on nondialytic ESKD care highlighting the importance of shared decision-making, symptom management, advance care planning, psychological, social and caregiver support, as well as cultural and spiritual care.43

Given the participants’ suggestions to promote successful aging in transplant recipients and candidates, we encourage dialysis and transplant programs to consider developing support groups for ESKD patients, particularly for patients transitioning to life on dialysis or to life after transplantation. Providers should be made aware of the unique challenges facing older ESKD patients, and should provide counsel to patients experiencing challenges in aging successfully. Furthermore, a patient’s goals for successful aging should be considered when making decisions regarding ESKD treatment modalities.

The small sample in this study of candidates and recipients limits the generalizability of our findings. Our study population is also limited by geographic area, as participants needed to attend a focus group meeting in person. However, the study population represented here is consistent with prior focus group studies in the field of kidney disease, transplantation, and successful aging,22,44-46 and we queried the opinions of both candidates and recipients. All participants had also been evaluated for or had received a kidney transplant at our center, and thus their suggestions for improving care may not be generalizable. However, prior studies have also reported on the challenges of abrupt transition to dialysis care and similar critiques of provider communication with older adults have been made in other settings.47,48 We aimed to have 7 participants at each meeting. However, the number of focus group participants was dependent on the number of people who were able to attend the meeting on a specific date. Meetings were held on various weekday evenings, but none were held on weekends or weekdays during the day. While some groups had <6–8 participants, we found that we were able to elicit broad insights on the perceptions of, barriers to, and experiences with successful aging in both larger and smaller group meetings. In regards to group dynamics, they were unique during each of our meetings and did not impact the overall content of our discussion.

The qualitative nature of focus group studies does not allow for causal inferences to be made, and the group setting does not allow for the examination of differences in responses by categories such as race, environmental factors, comorbidities, marital status, social support, access to caregivers, time on dialysis, or time since transplantation; future quantitative studies should consider for these factors when assessing successful aging in an ESKD population, as well as differences among kidney transplant candidates and patients who are not pursuing or are ineligible for transplantation, as these individuals may have unique perspectives on and experiences with aging with ESKD. Despite these limitations, the in-depth discussions had in the focus group meetings are hypothesis generating and provide a deeper understanding of successful aging which can help inform future quantitative studies to better understand whether transplantation impacts successful aging.

This study introduces the framework of successful aging to the conversation around frailty and aging in dialysis and transplant populations. While other studies have suggested that ESKD patients may have an increased risk of unsuccessful aging,19,49,50 to our knowledge, this is the first study that qualitatively assess ESKD patient perceptions of, barriers to, and experiences with successful aging, as well as the first to compare those perceptions, barriers, and experiences between pre- and posttransplant populations.

Kidney transplant candidates and recipients expressed a desire to age successfully in spite of their ESKD but viewed dialysis as a barrier to aging successfully due to the limitations imposed on their daily activities and quality of life. Transplantation was viewed by most participants as a facilitator of successful aging by eliminating the burden of dialysis and allowing them to pursue activities and lifestyles that promote successful aging. This highlights the need to develop aging-adapted support systems for ESKD patients who may find successful aging more attainable with support from their communities and healthcare providers and the need for interventions addressing successful aging with ESKD. Adults with ESKD may benefit from discussions with clinicians and caregivers about their goals for successful aging, barriers experienced, and strategies for improving their ability to age successfully.

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