A Qualitative Study Describing the Perspectives on Frailty and Its Management in Individuals with Kidney Failure

Visual Abstract

Abstract

Key Points

• The term, frailty, had unclear meaning for most participants but was commonly explained as weakness, dependence, and unmodifiable.

• Knowledge of frailty assessment tools and the evidence to support their prognostic utility was low among clinicians.

• Though patients and caregivers saw value in discussing frailty, the label of frailty was often viewed as pejorative.

Background

Frailty is highly prevalent among individuals with kidney failure and independently associated with poor health outcomes. Identifying and managing frailty can inform prognosis and care but stakeholders' understanding of frailty and their perspectives on how to detect and manage it in routine kidney care are unknown.

Methods

We recruited participants from four Canadian kidney programs in Alberta, Manitoba, and Nova Scotia from January 2021 to June 2023. We conducted focus groups and semistructured interviews with patients (50 years or older with dialysis-dependent or nondependent kidney failure), caregivers, allied health care professionals, and nephrologists. We used qualitative description and inductive thematic analysis to describe their perspectives.

Results

Ninety-one people participated: patients (N=31), caregivers (N=8), kidney allied health care professionals (N=38), and nephrologists (N=14). We identified three themes, each with subthemes: (1) What is frailty? All groups expressed uncertainty, but frailty was commonly described as physical, visible, inevitable, and fixed; (2) discussing frailty: the value of knowing what to expect with frailty, and frailty as a difficult topic to discuss; (3) frailty assessment and management: skepticism from patients and caregivers that frailty is measurable; support from clinicians for a systematic approach to identifying frailty but a lack of knowledge on multidisciplinary roles and potential interventions. For all groups, having actionable solutions after identifying frailty was key for acceptability and successful implementation.

Conclusions

Education on the nature and potentially modifiable aspects of frailty as well as the scope and potential benefits of frailty interventions is necessary for successful implementation of frailty detection and management in kidney care.

Introduction

Frailty is characterized by the loss of function and/or physiologic reserve across multiple systems, which leads to a vulnerable state, disability, institutionalization, and mortality.¹ As the age of the global population rises, frailty poses challenges for health service delivery,² especially for nephrology care. Frailty is three to seven times more common among those with kidney failure (KF) than in the general population, with prevalence ranging from 30% to 73%. Owing to the links between aging, age-related comorbidity (cardiovascular disease, diabetes), and loss of kidney function, the prevalence of frailty in KF will continue to increase.³ Furthermore, although frailty is an age-associated condition, it is common among younger adults with KF.⁴

There is growing recognition that frailty is a transdisciplinary issue that requires broader integration across specialties.^5,6 Frailty inclusive care entails case finding, assessment, management to prevent or slow progression, and alignment with goals of care. However, with few exceptions,⁷ it has not been routinely integrated into kidney care. For people with CKD, frailty predicts mortality, hospitalization, lower uptake of home dialysis versus facility-based hemodialysis, earlier dialysis initiation, transplant eligibility, and postoperative complications.^1,8–11 Given the prognostic significance of frailty and the challenges frailty presents, it is unclear why frailty inclusive care has not been more broadly adopted.

To better support patients with frailty and to inform the implementation of frailty care and the design of frailty interventions, it is important to understand the perspectives of those affected by it. A review of qualitative studies exploring stakeholder perspectives on frailty inclusive care found that uncertainty on the modifiability of frailty, variable resources, and strategies to respond to frailty, and the lack of person or family-centered approaches to address it were common barriers to integrating frailty care.¹² Less is known about how stakeholders in kidney care understand frailty and the role of frailty care in the management of kidney disease. We conducted this qualitative descriptive study with patients, caregivers, kidney allied health care professionals (allied HCPs), and nephrologists to understand their perspectives regarding frailty and implementing frailty care in the management of KF.

Materials and Methods

Study Design and Population

This qualitative descriptive study was conducted with patients, caregivers, allied HCPs, and nephrologists. To increase the likelihood that patient participants had encountered frailty, we recruited individuals aged 50 years and older who had either stage 5 dialysis dependent or nondependent KF (eGFR ≤15 ml/min per 1.73 m²), could communicate in English or with a translator, and could provide informed consent. Caregivers self-identified as someone who provided daily support to an individual with KF. Allied HCPs were purposively sampled for role diversity among the multidisciplinary kidney team and were directly involved with patient care (nurses, clinic managers, dieticians, social workers, kinesiologists, and physiotherapists). Nephrologists were sampled purposively, based on professional role. The Health Research Ethics Board at the University of Alberta approved this study (Pro00104790), and all participants gave informed consent. We used the Consolidated Criteria for Reporting Qualitative Health Research to report our findings.¹³

Recruitment and Data Collection

Participants were recruited from the outpatient setting of facility-based hemodialysis units, CKD, and home dialysis clinics from four Canadian kidney care programs: Alberta Kidney Care North, Alberta Kidney Care South, Manitoba Renal Program, and the Nova Scotia Health Renal Program, which represented three different provinces. Patients, nephrologists, and health care professional (HCPs) were recruited passively by emails and posters and actively by research staff in the clinics. Caregivers were recruited in clinics and through snowball recruitment by patient participants. Recruitment continued until no new themes, insights, or concepts arose.

All participants were offered to participate in a semistructured interview, dyadic interview, or a mini-focus group (3–4 participants).¹⁴ Focus groups were conducted separately for each of the groups, except for patients and caregivers, who were given the option to participate in the same group or separately. Focus groups were conducted through Zoom and by either Zoom or phone for interviews, as per participant preference. Sessions lasted from 30 to 90 minutes and were facilitated by a trained interviewer with no previous relationship with participants (J. Czupryn). All sessions were audio recorded and transcribed by Zoom or by a transcriptionist and checked verbatim with the original recording for accuracy. An observer (R. Davies) took field notes during and after each focus group. These notes were reviewed and discussed among members of the research team (S. Thompson, R. Davies, and J. Czupryn).

We obtained the following demographic characteristics from all participants: age, sex, gender, ethnicity, and province of residence. From patient-participants, we also obtained dialysis modality and duration and frailty status using the self-reported multidimensional Edmonton Frail Scale Acute Care.¹⁵

Interview Guides

Semistructured focus group and interview question guides were developed in accordance with the project aims and a review of the literature (Supplemental Item 1). Questions were open-ended and included prompts to stimulate in-depth discussions and engage participants. The question guides were refined in collaboration with a patient and a clinician who provided feedback on comprehensibility, interpretation, and structure.

Data Analyses

Our methodologic approach was qualitative description, which is used to provide a comprehensive understanding of perspectives while keeping interpretation close to the data.¹⁶ Data collection and analyses were conducted concurrently so that new concepts could be explored in the remaining sessions. The data were coded independently by J. Czupryn using an inductive approach with open coding. After their independent review of the transcripts, S. Thompson and R. Davies reviewed and revised the preliminary codes. Codes were refined iteratively with the review of subsequent transcripts. Coders discussed scope, definitions, redundancy, and then systematically applied codes to the remaining transcripts. Codes and relationships between concepts were used to develop themes based on common meaning using thematic analysis. Emerging themes were then compared across transcripts, first within each of the three participant groups (patient and caregivers, HCPs, and nephrologists) and then across participant groups. To ensure consistency and credibility, themes were discussed among the broader research team.

Results

Overall, 91 people participated: patients (N=31), caregivers (N=8), kidney allied HCPs (N=38), and nephrologists (N=14). Demographics and clinical data are presented in Tables 1 and 2. The median age of patients was 60 years (interquartile range [IQR], 54–67), most of whom were male (55%), White (66%), and received facility-based hemodialysis. Approximately 55% of patient participants had some degree of frailty, 21% were vulnerable, 21% were fit/not frail, and 3% did not complete the questionnaire. Caregivers were mainly female (88%) and of White race (57%). HCPs from across all three provinces participated with a median age of 43 years (IQR, 37–48). HCPs were primarily nurses (60%). Nephrologists had a median age of 49 years (IQR, 41–52) and were mostly male (80%).

Table 1.

Demographic characteristics of patients and caregivers

Characteristics	Patients (N=31)	Caregiver (N=8)
	N (%)	N (%)
Age, yr, median (IQR)	60 (54–67)	58 (46–70)
Sex
Female	13 (45)	7 (88)
Male	16 (55)	1 (13)
Race and ethnicity
Asian (East Asian)	3 (10)	1 (13)
Black	3 (10)	0 (0)
Caucasian/White	19 (66)	5 (63)
Indian subcontinent (South Asian)	0 (0)	1 (13)
Indigenous	1 (3)	0 (0)
Mid-East/Arabian	2 (7)	1 (13)
Other	1 (3)	0 (0)
Province
Alberta	22 (81)	7 (100)
Manitoba	4 (15)	0 (0)
Nova Scotia	1 (4)	0 (0)
Edmonton frail scale
Fit	6 (21)
Vulnerable	6 (21)
Mild frailty	7 (24)
Moderate frailty	5 (17)
Severe frailty	4 (14)
Modality
Hemodialysis at a hospital/clinic	19 (76)
Home hemodialysis	5 (20)
Peritoneal dialysis	1 (4)
Dialysis history
1–6 mo	10 (40)
7–11 mo	4 (16)
1–2 yr	3 (12)
>2 yr	8 (32)

Numbers may not add to 100% due to rounding and unreported data; IQR, interquartile range.

Edmonton Frail Scale: frailty risk is scored across nine categories (cognition, general health status, functional independence, social support, medication use, nutrition, mood, continence, self-reported performance) on a scale of 0–24, where 1–3 represent fit, 4–5 is vulnerable, 6–7 is mild frailty, 8–9 is moderate frailty, and 10+ is severe frailty.

Table 2.

Demographic characteristics of allied healthcare professionals and nephrologists

Characteristics	Allied HCP (N=38)	Nephrologists (N=14)
	N (%)	N (%)
Age, yr, median (IQR)	43 (37–48)	49 (41–52)
Sex
Female	35 (92)	2 (20)
Male	3 (8)	8 (80)
Race and ethnicity
Asian (East Asian)	3 (8)	1 (10)
Black	0 (0)	1 (10)
Caucasian/white	28 (78)	6 (60)
Indian subcontinent (South Asian)	2 (6)	1 (10)
Indigenous	1 (3)	0 (0)
Mid-East/Arabian	1 (3)	1 (10)
Pacific Islander	1 (3)	0 (0)
Province
Alberta	23 (61)	11 (85)
Manitoba	10 (26)	0 (0)
Nova Scotia	5 (13)	1 (8)
Role
Nurse	19 (50)
Nurse practitioner	2 (5)
Dietician	3 (8)
Social worker	2 (5)
Physiotherapist	3 (8)
Kinesiologist	5 (13)
Role (other)	4 (11)

Numbers may not add to 100% due to rounding; IQR, interquartile range: missing responses indicate those who declined reporting.

Role (other): unit manager, clinical pharmacist, spiritual care, and patient navigator. Allied HCP, allied health care professionals.

Themes and Subthemes

There were three main themes across all participant groups with varying subthemes (Table 3): (1) What is frailty? (2) communicating about frailty, and (3) frailty assessment and management.

Table 3.

Exemplary quotes from stakeholders with corresponding themes and subthemes

Theme: what is frailty?	Quote
Weakness and dependence	Patient quotes
	Q1 “You know, my definition of frail. It's kind of vague but it gives you the idea. Does the definition of frailty in the medical term, this may take to kind of give you an idea, mean like extreme weakness in a person? Like a person that's not able to, you know, be mobile? Like frailty means that if somebody touches you, you know, you're gonna bruise?
	Q2 “When I think of frailty, I think of weakness. I mean, there's a lot of times, you know that for me personally, you know you do dialysis, a run of the day. You haven't slept much at night. You have foot pain. You have leg pain. You know you're looking to your partner to just help you make it through the day. So, to me, that is frailty.”
	Q3 “So surprised and wanting to talk more about it. Wanting to explain, why did he [the doctor] write down “frail”? What does that mean?”
	Caregiver quotes
	Q4 “I didn't know that there was like a definition of frailty. I thought it was just a description. Like when you say that person is kind of frail. But I never knew that it's kind of a definition that is kind of, it's a topic. It's a topic in medicine, I guess.”
	Q5 “As a caregiver, like I'm going through a lot also, right? Just a lot of different emotions every day. When I first thought she might be frail, it’s like, okay… if she falls, like oh, what's gonna happen? Like it's gonna be hard for her to get up. Like, if she passes out and I'm not here, like I'm worried about that. You know, who, is she gonna be able to get up?”
It’s something you can see	HCPs
	Q6 “I can spend lots of time diagnosing malnutrition. I don't have a lot of time for intervention when it comes to supporting patients. I certainly talk about frailty in relation to patients and malnutrition and losing weight, too quickly. I can see it on a daily basis in our patients.”
	Q7 “We need help with understanding what frailty is. What information are we trying to get to, because what results are we looking for?”
	Nephrologists
	Q8 “So I always feel it's like something you can see, and you can notice, but you can't really put a word to it… I really focus on the physical part of it, and I think about things like sit to stand or just mobility, walking into clinic and needing assistance and those types of things that I can anchor at the bedside.”
	Q9 “Well, I mean, in general, I guess it's like someone who's got reduced function or who is not coping with their health or their activities of daily living, generally in the elderly population. But I mean, I don't know if that's a strict definition that's routinely accepted. It’s sort of my feeling of what frailty is… that's sort of my sense. But can I define it? You know what, as a nephrologist I'm used to defining things by hard numbers, your GFR is this, your blood pressure is that-but is there a frailty score, this is what your frailty index is? That I don't know. It's more of a “you look weak, you look like you're failing, you look frail,” if that makes sense.”
	Q10 “As nephrologists, are we well aware of the determinants of frailty that are beyond medical comorbidity. And I'd say probably not all of us are…like there's such a thing as cognitive frailty or social frailty. Frailty isn't the same as disability. Frailty is dynamic. Like these types of principles of frailty, I don't think we all get all of those.”
Frailty as inevitable and fixed	Patient quotes
	Q11 “Hearing other stories makes you aware. Makes you aware. And then it gets you to think about your own situation and admit, yeah, I'm gonna be frail or I'm already frail, to a degree. It's kind of a natural part of getting older. You have to get used to it gradually, hopefully.”
	Q12 “I think it’s just common sense. I think, when your organs fail, certainly you will become frail.”
	Q13 “And even physically I am like limited. I don’t want to be surprised because I know those are things that will happen. Like a couple of months ago there were certain things that I can’t do now. So, nothing else surprises me.”
	Q14 “It sounds old. It sounds like all of a sudden, like frail to me is someone like in their eighties and nineties who are struggling, you know, with everyday activities, which I don't think any of us really are.”
	Caregiver quotes
	Q15 “There’s lots of things that you can work on it to change frailty, apart from, of course, if they have like a medical condition.”
	HCP quotes
	Q16 “Just knowing the dialysis population, they're going to be getting weaker and weaker and sometimes it comes to the point there's really nothing more, we can offer.”
	Nephrologist quotes
	Q17 “You know, all the drugs, we put into people and yet we don't think enough about something as simple as making them actually stronger or helping them figure out how to be stronger. We have, we've tried. Like we have… there's a program here, where you can get funding for exercise in the CKD population, but if we're talking about frail people than they're often past that point. And you know, apart from exercise, I don't think I know. I guess maybe I'm thinking of it a little bit maybe too much as a fixed thing. Something that is a marker, not something that we can change.”

Theme: discussing frailty	Quote
Knowing what to expect	Patients
	Q18 “Is dialysis going to contribute to my inability to do things. That's what I need to know. Is having dialysis 3 d a wk going to cause me, in the future, to not be able to do this or that or whatever the case would be?”
	Q19 “Probably, if they used that word more [frailty], than you would know that you’re not going to feel the same. You’re frail now, so, you never were frail before you were on dialysis. So, it would be easier to understand that it’s not going to be the best.”
	Q20 “As I require more assistance, I'd be leaning heavier or more heavily on my caregiver in order to basically pick up the slack, as it were. And so, any support that that she could receive to offload the extra burden would be definitely good information to have.”
	Caregivers
	Q21 “I think that that word [frailty] is a word that needs to be used more often. I do, because it again puts things a little bit more in perspective. And it validates, I think, in the way they actually feel.”
	Q22 “Well, you know, a yr and a bit after [transplant assessment] we go to another doctor, and all of a sudden she said, well this doctor…he had concerns about frailty. My attitude was, why didn't he say something? You know, we would have reacted.”
	HCPS
	Q23“…we know that with the initiation of dialysis physical function does reduce a lot and it's been documented in literature, so I would definitely agree as to having these conversations, perhaps in clinic, before they start dialysis. Perhaps the nephrologist should incorporate this not as counseling means, but more of preparatory to life on dialysis and inform patients that the likelihood of some reduced function may occur…”
	Q24 “I guess, the real issue that I run into is that it stresses the family and stresses the staff that someone is failing and we seemingly can't do anything for them. So, it's almost as if the people around that patient need support in watching this person fail and do poorly. So maybe it's a matter of support for families or supports for staff…”
	Nephrologists
	Q25 “Well, it might be a reason to choose not to have dialysis, if they're on the fence and sometimes actually formally assessing and discussing it is because people don't always self-assess very well. Our assessment of them may not be great because they're sitting down talking to us. We don't see them in their functional state. But also, sometimes people don't, family members don't necessarily realize that their very elderly, demented mother is actually very non-functional. And if you actually have a formal discussion about it, then it becomes a little more apparent, well, if this is what they can do, well they're not going to be able to do more than that, if they start dialysis, that we're not going to improve that level of functionality.”
The ’F’ word: frailty as a difficult topic	Patients
	Q26 “I mean it's to me personally, it's just a little, I don't know the word’s embarrassing. I don't know if it's embarrassing. It's just sometimes it's hard for me to realize that yeah, I can't do the things I did when I was 20 or 30 yr old anymore, right?
	Q27 “Frail might be a little strong… Some people may think that it’s meaning that they’re done for. You know, they’re frail so you’re never going to be better.”
	Q28 “For me, the use of “frailty” would be something I would back off from. I don't like to hear it start things that way. The word’s pretty jarring… But I could see it coming into the conversation maybe more by definition of what's happening with frailty rather than using the word.
	Caregivers
	Q29 “I don't think it's a one-time thing. I think maybe like in the beginning, with someone starting dialysis, maybe it could be an introduction, just to let people know, you know, resources or whatever. And if the person's health is like declining, maybe it' be a good idea, you know, for someone to come back in and just kind of remind, you know, that there are these resources. You know, that what you're feeling is normal.”
	HCPs
	Q30 “Like I myself would never use the word “frailty”… I find mobility is a very non-threatening way to enter the conversation, because if people are having mobility challenges they're usually very motivated.”
	Q31 “I certainly agree that the use of the term frailty, I think I would have a lot of people sort of exclude themselves and not really resonate or feel like it fits, even when you contextualize it…I wonder, also about resilience. Building resilience, because so many of our patients, I think, just are incredibly resilient and would maybe be more inclined to hear within that, strength and wanting to promote or build strength or, you know, those kinds of concepts.”
	Nephrologists
	Q32 “I've used the word frailty, frail. I've never heard, I can't think of any pushback I've ever received. Seems like, in fact, a fairly gentle term.”
	Q33 “I also would love to know the patient perspective about being labeled as frail and the implications of that on decision making by nephrologist or other health care providers.

Theme: frailty assessment and management	Quote
Difficult to measure	Patients
	Q34 “I think it would be great if they could [measure frailty]. But I just don't think they have the ability to do it.”
	Q35“So, I don't know how that gets interpreted into the healthcare questionnaire (laughs). My husband does the laundry, but I could, but he does it. So, I find these, like I'm not quite sure how all this information gets digested and made into something that's actually helpful, or representative of what we really need.”
	Caregiver
	Q36 “Then, when I look at (loved one), and the struggles that he has, you know, to do everyday tasks, that is also a form of frailty and I don’t know how you measure that.
The need for a systematic approach	HCPs
	Q37 “But I just thought, a good way to describe the barriers that we don't have a systematic approach to assessment of frailty or even management of it, at a program level. But yeah, I think a learning need would be development of an approach and training staff about frailty and interventions… I think it's just important to have some sort of consistent approach that everybody knows about.”
	Nephrologist
	Q38 “I think that having a standardized definition, to which you can then judge and engage people and then determine whether that is a predictor of something. I think that's a very helpful thing.”
	Q39 “We’ve been thinking about frailty for a while, but not doing much about it…Yeah. And that fits with the fact that we do appear to be assessing it without doing anything about it…So our gestalt is obviously not good enough. We don't assess it…I think as a program is we're not we're not doing it. So, I think yeah, that is a concern there for sure.”
“Whose responsibility is it then?”	Patients
	Q40 “I think that the role directly kind of pops into my nephrologist, because of the fact that he's the guy that kind of, he's usually the first person to read me my results on blood work and things like that. So, I would say that it probably falls on him. But I think it also, the responsibility goes to everybody on that team, be it your nephrologist or your endocrinologist or your gastroenterologist.”
	Q41 “Well, they should talk to you about it and maybe if they put you in contact with those that handle these things other than the kidney problems, right? If they see the problem. I know it's not their-they can't take care of you if it's like, I said, it's cognitive issue or your muscles, or atrophy, or whatever but being in the health care field, they should be able to put you in contact with those that can take care of that, don't you think?
	Caregiver
	Q42 “Her kidney care team should also have these discussions with her about frailty. it's just that they know and they're aware that patients can go through this. And just, you know, just chatting with the patients, because we see the nurses more than anybody.”
	HCPs
	Q43 “Most of the time we don't even know where to refer them to or if there's even a person who, if there’s place for them to go. Or is it another, one-yr waitlist for them to be seen by physical therapist. You know, that's the, do we even bother? […] Figuring out where the supports exist and how to access them. And if there are no supports, we need to advocate for supports. I think we all need to take responsibility for advocating for supports.”
	Q44 “We have so many rural patients. Like is this an expectation, like the family doctor would do and so many of our patients don't have family doctors […] who's the right person for this?”
	Q45“It’s not like we are not aware of frailty and we would probably assess it subjectively. But we don't tend to get involved with the formal assessment of frailty. So, I think we would rely on whoever is identifying it to consult us to see if there's anything that can be done related to, I'm thinking more stopping medications as opposed to starting them. So maybe one of the barriers is that we're not even brought into the discussion.”
	Nephrologists
	Q46 “Even if I assessed it and identified it, I don't know where we would go with it because I don't know where the referrals are.”
	Q47 “Because if you, if your view is that it's only a physical and a function thing, I think that as a nephrologist you're less keen on, you know, we're not we would all view ourselves as not being physiotherapists, right? And I'm not saying I think like this, but this is the, this is the sort of narrow band view the people have. Or like, that's not my sort of interest or area.”
	Q48 “Another example might be, you know if a pharmacist to seeing a patient, you have a kidney pharmacist and they're aware that the patient's frail, there's a link between polypharmacy and frailty, they may be keener on de-prescribing medications. So, this is the kind of like angles, that I would almost sort of see. Like if the information of the outcomes is specifically tied to the practitioner that's going to be seeing them, to allow them to have like a direct idea of how, the way that they deliver care should be modified, I think it'd be very valuable… if for the nephrologist, you know, maybe you have to think about detrimental dialysis or maybe not initiating dialysis. For the dietitian, let him eat more. For the pharmacist, think more about how to de-prescribe medications and minimize their pill burden.”
	Q49 “I think if the question is, does it matter to us if this patient is frail or not, and will it change any aspect of our management. If the answer to that is yes, then I think it is within our wheelhouse to be learning to assess that. And, over time, as we create value around that, then it will get incorporated into royal college objectives which will influence training.”
Actionable solutions	Patients
	Q50 “And also, if they give me the solution for it [frailty], to improve, well and good. Otherwise, what should I be doing to improve that, if there is any. If there isn't any, I also accept that, knowing that nothing could be done.”
	Caregiver
	Q51 “Tell her the truth, but kind of give her more clarity on the plan, if there is more to do for that[frailty], if there is more to do, or this is the end and there are no other things that can be done. But even she feels when they say, when they come to the end result and say, okay, there is nothing to be done, that at least they can give her the steps that they have gone through, and the steps that need to be done…but she feels she feels lost in the middle. She doesn't know where she started and where it ended, and at what stage is she on, this kind of thing.”
	HCPs
	Q52 “…we need to build up the primary care, and it may be, if there were physios, OTs, social work, pharmacy closer to home for these patients, we could add, you know, specialist clinics, communicate with these other teams who could support the patients close to home.”
	Nephrologist
	Q53 “Yeah. I mean if you're asking these questions and, you know, they're saying ‘well I have weakness, I could really use some help’ and then I say ‘yeah geez, that's tough. Goodbye.’ You know, I mean how does that look really to the patient and on me if I'm just ignoring these things, because I know I have no avenue for referral?”
	Q54 “Asking the questions and gathering the information around frailty isn't in of itself, sufficient. We have to learn how to use it. So, what does frailty inclusive care look like for our patients? So, I think we need to start thinking about that at the same time as we're evaluating for it.”

HCPs, health care professionals; OTs, occupational therapists

What Is Frailty?

Weakness and Dependence

All participant groups expressed uncertainty about the meaning of the term “frail.” Patients explained frailty primarily as a physical state due to weakness, fragility (quote 1 [Q1]), and other physical symptoms that lead to dependence (Q2). It was uncommon for patients to discuss other domains, such as cognition or social impairment. One participant recalled being surprised and confused that a doctor had described them as frail and wanted more explanation (Q3). As one caregiver expressed, there was a lack of awareness of frailty as a medical condition (Q4). When describing loved-ones as frail, caregivers commonly mentioned vulnerability and dependence (Q5).

It Is Something You Can See

Allied HCPs viewed frailty, often described as a physical state, as a common problem that they had limited resources to address (Q6) and that they needed more help understanding (Q7). Nephrologists commonly described frailty as “something you can see and notice” but difficult to define (Q8), partly because frailty was viewed as a subjective assessment (Q9). One participant expressed that nephrologists were likely unaware of the multidimensional and dynamic nature of frailty (Q10).

Frailty as Inevitable and Fixed

Across all participant groups, frailty was often viewed as inevitable and fixed. Patients viewed frailty as expected with aging and illness (Q11, 12). One participant experienced losing function over a short period and similar to other participants, expressed resignation. One patient relayed that they did not see themselves as frail as the term was applicable to people in their “eighties and nineties” (Q14). Several caregivers described frailty as more dynamic and potentially modifiable but with limits, such as medical conditions or advanced age (Q15). Conversely, HCPs and nephrologists tended to explain frailty as unmodifiable (Q16), “as a fixed thing…not something that we can change (Q17).”

Discussing Frailty

Knowing What to Expect

When participants were asked about their views on discussing frailty in the kidney care setting, the value of knowing what to expect was a common subtheme across all groups. Many patients questioned whether dialysis may contribute to weakness and lead to an “inability to do things” (Q18). One patient explained that using the term “frailty” could help them understand that “it's not going to be the best” and that dialysis played a role in that process (Q19). Another patient explained that any information that would help their caregiver cope was important (Q20). One caregiver thought the term, frailty, could help validate how patients were feeling and also saw value in normalizing it (Q21). Another caregiver relayed a scenario in the context of transplant assessment where a doctor had documented their loved one as “frail,” yet this concern had not been disclosed to them then, which was viewed as a missed opportunity to respond (Q22). Several allied HCPs discussed the relationship between dialysis initiation and a decline in physical function and thought patients should be routinely counseled on this before dialysis starts (Q23). Allied HCPs commonly expressed that discussing frailty may help families and staff feel supported in how they are caring for a patient, rather than just “watching this person fail and do poorly” (Q24). Most nephrologists relayed that knowing the patient's frailty status could be informative for decision making on risks and benefits of treatment, including dialysis. As one nephrologist explained, families may not recognize signs of frailty in their loved ones and therefore measuring their function had value (Q25).

The “F” Word: Frailty as a Challenging Topic

Although there was general consensus that frailty discussions had value, most patients viewed the term “frail,” as having negative connotations that inferred a lack of capability (Q26) and one participant equated its meaning to being “done for” (Q27). Several patients suggested that discussing the specific concerns “rather than using the word” would facilitate better discussions (Q28). Another patient commented that being frail should not be viewed as a “final statement” which a caregiver explained as providing on-going conversations, resources, and assurance (Q29). Similarly, HCPs viewed the term negatively and, like patients, recommended discussing it in the context of the domain(s) of concern. For example, discussing problems with the domain of mobility was viewed as “nonthreatening” (Q30), while other domains, i.e., cognition and mental health were “more difficult to discuss in a sensitive manner.” HCPs expressed that frailty was a limiting term because many patients would not see themselves as frail and proposed framing the conversation for building resilience (Q31). Conversely, one nephrologist viewed frailty as “a fairly gentle term” (Q32), while another was curious about the patient perspective of “being labeled as frail” and how it would then affect the care provided by health care teams (Q33).

Frailty Assessment and Management

Difficult to Measure

When asked about frailty assessment, patients and caregivers expressed that frailty would be a challenging concept to measure (Q34, 36). One patient relayed that a questionnaire she completed to assess her function did not adequately assess her capabilities (Q35).

The Need for a Systematic Approach

Allied HCPs and nephrologists agreed that a consistent approach to frailty assessment was needed and for some nephrologists, useful if the assessment had prognostic value (Q37, 38). Many HCPs saw frailty assessment and interventions as learning needs. As one nephrologist reflected, it appeared as though they were already informally assessing frailty using “gestalt” without doing anything about it (Q39).

“Whose Responsibility Is It Then?”

When asked about the role of the kidney team in frailty management, perspectives varied. Several patients viewed frailty care as a shared responsibility across care providers regardless of their expertise (Q40), but like caregivers, due to the frequency of interactions with the kidney team, identified the kidney team as central in that role (Q42). Most patients thought the kidney team should discuss frailty with them and then refer them to the appropriate resource for management (Q41). However, HCPs and nephrologists commonly reported a lack of knowledge on multidisciplinary team (MDT) roles in frailty management and additional difficulty with accessing resources (Q43, 46). As one allied HCP commented, there was a need for nephrology teams “to be more familiar and updated what other MDT can do.” Allied HCPs often relayed frustration with the lack of access to resources or knowledge of what resources were available. One allied HCP expressed that advocating for frailty supports was everyone's responsibility (Q43). Limited support in rural areas was commonly mentioned as a barrier to frailty care and added to the lack of clarity on whose role it was to address it (Q44). One allied HCP articulated their role in frailty management but relayed the barrier was that they were rarely involved in discussions with the healthcare team on how to intervene (Q45). One nephrologist commented that a narrow understanding of frailty (i.e., as something purely related to physical function) could explain why nephrologists may not see it as within their role to manage (Q47). Another nephrologist articulated the role of the multidisciplinary kidney team in frailty management and its relevance to their management decisions (Q48), while another added that if frailty status influences any aspect of clinical decision making in kidney care, knowledge on frailty assessment should be integrated into nephrology training (Q49).

Actionable Solutions

Across all groups, the necessary component for successful implementation of frailty care was having clear “actionable solutions” or “next steps” after frailty identification. However, the expectations of next steps differed in meaning across groups. Patients and caregivers expressed they wanted to know what could be done to improve frailty, but still if nothing could be done, they still valued the information because they would know where they stood (Q50, Q51). HCPs commonly framed solutions as improving the lines of communication with community health resources and primary care (Q52). Nephrologists commonly viewed this as an intervention to improve frailty status. Several nephrologists expressed concern that the assessment of frailty implied there was something to offer and assessment without action would look like their concerns were ignored (Q53). Another nephrologist expressed desire to understand patients' perspectives on frailty care (Q54).

Discussion

Frailty is a common and complex medical condition that negatively affects health outcomes for people with KF. Knowledge of frailty and patients' frailty status is critical to provide individualized, patient-centered care and to inform shared decision making. We collected qualitative data from a broad range of stakeholders from four Canadian kidney programs and identified several challenges and opportunities for the implementation of frailty inclusive care in the kidney setting and provided recommendations (Figure 1). Overall, frailty was viewed as a common problem that stakeholders were aware of but often incompletely understood. For most participants, the term “frailty” had unclear or vague meaning but was commonly explained as a weakness, dependence, and as state that was visible and fixed. Many patients and caregivers viewed frailty as an inevitable consequence of aging and illness. Although allied HCPs and nephrologists generally saw the value of using a consistent and standardized approach to frailty assessment, knowledge of existing frailty assessment tools and the evidence to support their prognostic utility was low as was knowledge of potential interventions to modify frailty. Patients and caregivers saw value in discussing frailty for knowing what to expect (e.g., the effects of dialysis on function), validating their experience, and providing the opportunity to respond but along with allied HCPs, viewed “frailty” as a pejorative term with negative connotations. Patients and allied HCPs proposed that focusing on the relevant domain(s) of concern (e.g., low mobility) rather than frailty as a whole would facilitate the discussion. Among patients and caregivers, there was a consensus that the kidney team should be aware of their patients' frailty status and know how to refer to the relevant resource(s). However, both clinician groups lacked knowledge on MDT roles and scope in addressing frailty care.

Figure 1.

Recommendations for frailty inclusive care in people with KF. KF, kidney failure; MDT, multidisciplinary team.

Although there is no agreement on how frailty should be operationalized, conceptualizing frailty as a purely physical syndrome has implications. We found that for both clinician groups, this view likely influenced the perception that frailty management was limited to those with expertise in rehabilitation and exercise. We also found that the perceived lack of access to this specific resource was seen by many clinician participants as a key barrier to addressing frailty. The view that frailty can be identified unsystematically using only appearance has been reported elsewhere in the literature across a broad groups of health care providers.^17–19 However, this informal approach may only identify severe frailty.²⁰ For people with KF, visual diagnosis of frailty is confounded by signs of uremia (weakness, slow gait), comorbidity, and disability and has low agreement with standardized frailty tools.^21,22

We found that there were knowledge gaps not only on potential interventions to delay or treat frailty but also on how frailty status may change management. From reviews of randomized controlled trials in the general population, first-line approaches to preventing frailty and delaying its progression were early identification with frailty assessment, exercise, optimizing nutrition, and deprescribing.^23–26 Although trials to identify treatments that prevent or delay frailty in people with KF are needed, effective interventions that improve specific frailty domains have been identified. For example, exercise training improves performance-based physical function, the physical domain of health-related quality of life, as well as symptoms that contribute to frailty, i.e., depression and fatigue in dialysis-dependent populations.^27,28 An intervention of value that has been prioritized by patients is more individualized nutritional advice,²⁹ which can include liberalizing dietary restrictions to focus on food enjoyment and nutritional status, rather than attainment of biochemical targets. In addition, as individuals with hemodialysis-dependent KF take on average 12±5 different medications per day, the cost-saving and high acceptability of this intervention may be generalizable to this population.^30,31

There was general consensus that seeking to detect frailty was inadequate on its own. What participants described as acceptable next steps after assessment was likely influenced by their roles and extent of knowledge about the scope of potential interventions (e.g., deprescribing and mental health support and exercise). The resignation and acceptance of the frail state mirrors those from another study in older kidney patients with frailty³² but is notable given the relatively young age of our patient participants and highlights the knowledge gap among patients and caregivers regarding possible frailty interventions.

The patient and caregiver experience of frailty and the perception of frailty as a negative term are consistent with those reported elsewhere in the literature.^32,33 We extend these findings by including the views of clinicians and found that allied HCPs, and to a lesser extent, nephrologists, also viewed frailty as a pejorative and perhaps an unduly nonspecific term. Many participants felt that frailty could be adequately discussed by focusing on the specific domains of concern and recommended avoiding the term “frail.” However, this approach might also promote a more siloed approach to management that deters a multidisciplinary and holistic approach to frailty as a distinct syndrome. Framing frailty as a medical condition rather than an attribute or a description, improving knowledge on its modifiability, and describing and communicating the potential benefits of early detection may help to reduce stigma and improve acceptability of the term.

Our findings should be considered along with our study's limitations. First, the generalizability of findings to other kidney programs may be limited, particularly to those with different models of care in nonacademic settings. However, qualitative inquiry aims to use rich description to provide insight into a particular topic (which is then judged by the individual as applicable to their experience or not), and thus, external validity per se is not directly relevant as it is for quantitative studies.³⁴ Second, although we aimed to attain approximately representative participation from a relevant group of stakeholders, nephrologists and caregivers were relatively underrepresented and mainly from a single province. For patients and caregivers, we also did not collect urban versus rural location, which may influence perspectives on frailty care. Third, although we included a younger patient population than previous studies examining frailty perspectives,^35,36 we recognize that age cutoffs are somewhat arbitrary. Finally, there was a relative lack of diversity in participant demographics that prevented us from analyzing our findings according to these factors.

In conclusion, this study of a broad group of stakeholders from different Canadian kidney care programs identified key knowledge needs on how frailty is conceptualized and managed, including a need for kidney teams to identify how best to provide frailty care that falls within their scope of practice. Important areas for future study include patient and caregiver involvement in the development of approaches to increase the acceptability of frailty communication and a better understanding of how frailty preferences may differ among younger adults with KF as compared with an older population.

Supplementary Material

cjasn-20-1407-s001.pdf ^{(2.6MB, pdf)}

cjasn-20-1407-s002.pdf ^{(113.9KB, pdf)}

Disclosures

Disclosure forms, as provided by each author, are available with the online version of the article at http://links.lww.com/CJN/C361.

Author Contributions

Conceptualization: Sara Davison, Stephanie Thompson.

Data curation: Clara Bohm, Joanna Czupryn, Rachelle Davies, Tennankore Karthik, Jennifer MacRae, Stephanie Thompson.

Formal analysis: Joanna Czupryn, Rachelle Davies, Sara Davison, Stephanie Thompson.

Funding acquisition: Stephanie Thompson.

Methodology: Stephanie Thompson.

Writing – original draft: Stephanie Thompson.

Writing – review & editing: Clara Bohm, Sara Davison, Tennankore Karthik, Jennifer MacRae, Carmel Montgomery, Stephanie Thompson, Marcello Tonelli.

Funding

S. Thompson: Amgen Canada (NAP).

Data Sharing Statements

Original data generated for the study will be made available on reasonable request to the corresponding author. Other. Qualitative. Data in transcript format on a secure server. Anonymized data for the study will be made available to interested parties on written request to the corresponding author. Decline color. No.

Supplemental Material

This article contains the following supplemental material online at http://links.lww.com/CJN/C362.

Supplemental Item 1. Interview and focus group guides.