Background

Frailty has been characterised as a state of accelerated aging with increased vulnerability to adverse outcomes and non-routine recovery from relatively minor insults [1, 2]. Our previous work exploring frailty in the context of chronic kidney disease (CKD) has demonstrated that frailty is a psycho-emotional-social experience that interacts with comorbidity and symptoms of uraemia [3].Frailty is highly prevalent among patients with advanced CKD, with rates of frailty ranging from 30 to 80% among patients with late-stage CKD and undergoing dialysis, compared to rates of 12% in study participants with stage 3 CKD [4, 5]. Frailty onset occurs at a young age with up to 63% of patients younger than 40 years manifesting frailty at dialysis initiation [6]. As in the general population, traditional risk factors of sarcopenia, inflammation and oxidative stress promote frailty, while CKD-specific factors of uraemia, anaemia, mineral bone disease, impaired nutrition, polypharmacy and dialysis therapy exacerbate its severity [7, 8]. Frailty in this context is associated with various adverse patient outcomes including accelerated CKD progression, worse cognitive impairment and symptom burden, increased risk of hospitalisation, excess infective and cardiovascular complications, reduced access to the benefits of kidney transplantation and death [9,10,11,12,13,14,15].

To date there are limited formal guidelines on interventions to maintain or improve functional status in CKD populations. The Kidney Disease Improving Global Outcomes initiative recommends that patients with kidney disease should be encouraged to increase their level of physical activity through exercise training incorporating self-monitoring, verbal reinforcement and motivational support [16]. In a position statement published by the Japanese Society of Renal Rehabilitation, the authors acknowledge the persistent legacy of reports from the 1990’s endorsing rest for patients with CKD, and especially with nephrotic syndrome, where exercise may exacerbate proteinuria and accelerate renal function decline [17]. Contemporary evidence informing this rehabilitation guideline instead supports the use of exercise therapy in CKD, haemodialysis and transplant populations, but remains limited in its examination of impact on hospitalisation, cardiovascular events and mortality outcomes [17]. Likewise, the International Society for Peritoneal Dialysis in collaboration with the Global Renal Exercise Network have recently published practice recommendations for physical activity and exercise in peritoneal dialysis, acknowledging limitations in the quality of evidence and strength of recommendations in the context of frailty with most recommendations denoted 2D (weakly recommended, very little confidence in the estimate of the effect) [18].

Studies of patients undergoing haemodialysis indicate interest in participation in exercise-based programs that offer improvement in strength and fatigue, recognising the implications for mortality and transplant outcomes [19]. One study of US haemodialysis patients reported 98% were concerned that a sedentary lifestyle was unhealthy and endorsed the benefits of physical activity, but only 8% reported no barriers to exercise, describing prevalent limitations of fatigue and shortness of breath [20]. Comorbidity, poor mood, restricted time and limited motivation also limit uptake of exercise interventions in this patient population [21, 22]. Furthermore, clinicians present iatrogenic barriers to appropriate exercise implementation; surveys indicate doctors and nurses believe patient time and adherence is limited and were subsequently less likely to prescribe or offer counselling about exercise [21, 23, 24]. Studies report that clinicians express uncertainty about whether frailty is remediable, with distinctions needed to clarify the distinction between “irreversible” and “reversible” frailty [25, 26]. Rehabilitation remains underutilised in nephrology populations, particularly among those with frailty, despite evidence that intensive inpatient rehabilitation programs offer equivalent improvement in functional outcomes to patients undergoing haemodialysis when compared with non-CKD controls [27, 28]. Evidence supports the use of supervised and longitudinal exercise interventions but is limited by under-representation of patients with CKD/frailty phenotype, recruitment and retention challenges and ability of participants to sustain the activity after study discontinuation [27, 29,30,31,32,33]. Commentators reflect that exercise protocols developed with research priorities in mind have limited utility in engaging patients with multimorbidity and longitudinal care needs [34]. There is a role for consumer engagement and speciality consultation with exercise physiologists to help navigate these barriers.

Understanding the patient perspective of CKD/frailty is critical to offering holistic patient-centred care. Studies increasingly demonstrate that patient activation improves clinical outcomes, enhances patient and staff satisfaction and may reduce health-care costs [35, 36]. For care models to be truly effective they must demonstrate respect for the lived experience, acknowledging the validity of their stories and authority of legitimate patient feedback [35]. This qualitative enquiry seeks to understand patient values, priorities and preferences for exercise intervention in frailty with the view to designing a fit-for-purpose and feasible rehabilitation strategy appropriate to patients with advanced CKD and frailty.

Methods

This study is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [37].

Participants and setting

Participants from the CKD Frailty study [38] with Fried Frailty Phenotype and their caregivers were invited to participate in a focus group or in-depth interview. Eligible participants were English-speaking people with lived experience of advanced chronic kidney disease (defined as eGFR < 20 ml/min) or undergoing maintenance dialysis. People with cognitive impairment defined by existing diagnosis of dementia or Abbreviated Mental Test score ≤ 5/10 were excluded from participation due to inability to provide informed consent. People with functioning kidney transplant were also excluded due to eGFR > 20 ml/min, and the potential confounding impact of immunosuppression. Potential participants were approached by phone or in-person by study investigators. Purposive sampling of diverse patient demographics was utilised. Sample size was informed by the principles of ethnography indicating smaller data collection facilitates in-depth study of the topic, along with principles of theoretical sufficiency which indicate that a homogenous sample usually allows for meaningful analysis and credible conclusions [39,40,41]. AK provided study information, obtained consent and arranged focus groups. Ethics approval was provided by The Australian National University and The Canberra Hospital Human Research Ethics and Governance Office 2020.ETH.00038. Patient Information and Consent Form was provided. All participants provided informed consent. Consent was documented by signing consent form upon commencement of the interview or verbal agreement where interviews were conducted over phone. Participants were able to withdraw consent up to 2 weeks after conclusion of the focus group discussion, whereupon their discussion contributions would be redacted from the interview transcript. Participants were instructed to respect the privacy and confidentiality of the group and not discuss issues or personal details of the focus group outside of the focus group.

Participants were offered taxi vouchers for participation.

Data collection

Participant demographic and kidney disease data were collected as part of the larger CKD Frailty study. Demographic details of caregivers were not collected. AK (female, nephrologist, renal supportive care physician and researcher with experience in qualitative research analysis), SR (female, palliative care physician with PhD based on extensive experience in conducting interviews and analysis for qualitative health research) and KH (female, exercise physiologist) conducted two focus groups set within the group education room within the renal outpatients’ area of The Canberra Hospital. Focus group interviews were facilitated to contain a minimum of two and a maximum of six participants per group. Where interested participants were unable to attend a focus group interview, they were offered a one-on-one interview, either in-person or over the telephone, utilising the same open-ended interview approach with AK. Interviews took place between January and April 2023. Interviews were based on Topic Guide developed from literature review on this topic [4, 42]. A pilot interview was conducted to refine the Topic Guide. A Free Association Narrative Interview Method (FANIM) [43] was adopted, recognising that this participative and conversational-style approach is most appropriate in a patient population that may become cognitively tired and require prompts to recall their thoughts [44]. Participants were made aware that the researchers were seeking to understand patient caregiver perspectives of the lived experiences of frailty, participation in frailty rehabilitation and exercise for health maintenance and expectations of care to produce recommendations for frailty rehabilitation strategies in the CKD/Frailty setting. Participants were informed of the researcher’s occupations and research experience and motivations.

During and after each focus group or interview AK, SR and KH documented field notes of key themes that emerged. Focus groups and interviews were audiotaped and transcribed verbatim. The de-identified transcript was coded for meaningful concepts and analysis grouped similar concepts into emergent themes using a constant comparative method of data analysis [45]. Recruitment ceased at data saturation when no new ideas emerged, or additional themes were identified during transcript coding.

Topic guide is available in Supplemental Materials S1.

Data analysis

Data responses were de-identified before analysis. NVivo12 Plus software [46] was used for thematic analysis. AK read transcripts using inductive thematic analysis, identifying themes at a semantic level, appropriate to health services research to allow a rich and complex account of the phenomenon studied. Analysis followed the steps instructed by Braun and Clark: familiarisation with data, initial coding, searching for themes, reviewing themes using the constant comparison method, monitoring for data saturation, axial coding and finally defining themes for final analysis and report [47]. Social cognitive theory (SCT) was used as a conceptual framework to organise the data and allow participants to relay their experiences through interpretation of their accounts. SCT provides a framework to understand how personal, behavioural and environmental factors interact to influence behaviour and has been used as the analytical framework within other reports of exercise participation in patients with CKD [48]. Concept mapping was used to reflect relationships and linkage between themes. Reliability and validity were ensured through development of a codebook. SR performed coding comparison query using the codebook for rigorous appraisal of themes and meaning. An audit trail documented iteration of themes and analytic decisions.

Clinical trial number: not applicable.

Results

Twenty-six participants with frailty were approached for participation in focus group discussion or in-depth interviews; twelve participants declined due to competing health concerns including fatigue or fall and clinic burden. Two focus groups (N = 4, N = 2) and six interviews with participants who had Fried frailty phenotype were conducted, transcribed verbatim and analysed prior to saturation of themes. Three caregiver semi-structured interviews were conducted. Three participants indicated willingness to participate in a focus group but failed to attend: one withdrew due to concerns of privacy and opted for one-on-one interview instead, the other reported he forgot the appointment and subsequently withdrew from participation, the third participant withdrew without providing a reason. Six participants (50%) were dependent on maintenance haemodialysis and 6 (50%) had advanced CKD, one of whom was pursuing conservatively managed non-dialysis kidney care. One participant and one caregiver were directly under the care of AK in her role as nephrologist. One participant undertaking dialysis was directly under the care of AK in her role as renal supportive care physician. All participants had been assessed for frailty by KH. None of the participants were known to SR in a clinical capacity. Focus groups and interviews were up to one hour duration.

Demographic details of participants are provided in Table 1.

Table 1 Demographic details of participants
Full size table

Six themes and 19 subthemes were identified reflecting patient and caregiver perspectives of frailty, kidney disease and rehabilitation. Table 2 provides illustrative quotes.

Table 2 Illustrative quotes
Full size table

Accommodating and adapting to frailty are acts of frailty resilience

Participants demonstrated systems for accommodating reduced strength and endurance, along with the requirement for medical equipment. Mastery of the home environment through appropriate use of equipment and technology was linked to self-realisation and an act of resilience in the face of frailty. Individualised and self-sufficient strategies allowed participants to navigate common barriers to exercise participation, suggesting a deeper understanding of frailty and its management. In the absence of evidence-based strategies for frailty intervention, participants with frailty employed internal resources for self-management. Acceptance of one’s limitations emerged as an act of resilience rather than resignation, aligned with perseverance while attending to symptoms and discomfort. Caregivers validated patient’s self-directed efforts for rehabilitation in the face of frailty. Several patients endorsed the role of rest in frailty recovery, suggesting an attitude of passivity, but also great endurance.

Exercise is endorsed as a means of frailty rehabilitation

Exercise training and physical activity were endorsed by participants as important components of wellbeing and routes to rehabilitation. Participants described social pressures and community expectations of sedentary behaviours but sought to participate in physical activity, demonstrating a deeper knowledge of the relationship of frailty and inactivity. Participants reflected that discussion about the benefits of physical activity prompted uptake of greater physical activity. Participants reported on a legacy of comorbidity and inactivity and identified a growing need for frailty intervention and fear of future debility. In general, participants expressed engagement with rehabilitation strategies and strong internal motivation. Participants demonstrated sustained intention to be more physically active, as well as optimism that states of reduced physical function and frailty could be overcome.

Experiences of exercise for rehabilitation: identifying unmet needs

Participants were experienced in both formal and informal rehabilitation strategies, with several reporting on non-professional recommendations for physical exercise and demonstrating familiarity with graduated intensity programs as well as progressive confidence and competence. There were disclosed limitations to self-prescribed programs, with the risk of falls and ability to get up off the ground forming a key objective in many formal programs, but dismissed as a goal by participants. Nevertheless, participants exhibited agency, disclosing a variety of self-sourced strategies for maintenance of activity.

Most participants also had experiences with formal rehabilitation and exercise programs, as well as an acceptability of fitness or frailty assessment. Frailty assessment and fitness testing was felt to be acceptable where it facilitated entry to additional care. Programs that incorporated supervision and feedback through a graduated course were felt to be valuable, along with learning strategies for self-monitoring which supported feelings of self-efficacy. Reports of disrupted participation by unpredictable health events were frequent. Experiences of over-vigorous and therefore unsuccessful programs were also common. Programs that lacked social interaction and appropriate support were consistently reported to be ineffective and quickly abandoned.

Frailty rehabilitation goals are couched in normative behaviours

Activities of daily living emerged as key strategies for maintaining and motivating activity.

Rehabilitation goals were frequently framed around activities of daily living and life participation. Both caregiver and patient participants described a progressive desire for greater independence and social reintegration. Hospitalisation was framed as an event that accelerated frailty or disrupted frailty rehabilitation. Following on from this, return to the home environment after hospitalisation was conceptualised as a key goal wherein activities of daily living could promote recovery and where social and psycho-emotional needs could be met.

Frailty rehabilitation and the need to understand “people like us”

There was a strong appeal for appropriate understanding from program instructors and the social support and camaraderie made possible by a shared experience of the burden of kidney disease. The “people like us” theme emerged strongly within the focus group setting where participants reflected on the opportunity for social interaction and peer-to-peer education. In the interaction from Focus Group 1 we see participants validate each other’s informational and social needs. Participants articulated a clear preference for formal exercise programs that incorporated social interaction, peer navigation and multi-modality support. Formal group exercise programs were reported to address additional psycho-emotional-social needs and validated the need for interventions for the non-physical aspects of frailty. Critically, participants reported a desire for greater knowledge about their health and disease as a source of agency. Multimodal interventions were envisaged that addressed symptom complaints and were individualised for different needs.

In this way, frailty was conceptualised as a psycho-emotional-cognitive experience as well as a physical state. Participants reported a need for cognitive support and intellectual challenge as part of an effective frailty intervention. Participants strongly endorsed the need for consumer design of rehabilitation programs so that providers were better informed of participants’ individual needs.

Barriers and disruptors to frailty rehabilitation in the CKD context

Unaddressed symptom burden emerged as a crucial barrier to participation in physical activity, with common experiences of pain, dyspnoea and fatigue/insomnia identified as a key symptom cluster. Participants however, frequently attributed their symptoms to age rather than frailty or kidney disease. Nevertheless, participants identified similarities in symptoms and their disruptive impact on physical activity. Shared experiences of symptom burden emerged as an opportunity to build camaraderie. Pain experiences were very common. Appropriate and adequate pain management strategies were identified as key attributes of an effective rehabilitation program.

The commodities of time and energy were highly valued, particularly by those participants undergoing dialysis. Lack of time was a commonly reported barrier to participation in physical activity, with dialysis and medical appointments dominating. Sometimes this led to activities being ceased. Most participants indicated a preference for physical activity either before dialysis or on a non-dialysis day. The theme of a “wasted day” spent “tethered to a machine” subjugated these preferences. Overall, there was little support for intra-dialytic exercise.

A number of participants reported difficulties envisioning strategies for frailty remediation, nevertheless affirming a commitment to trying. Other participants indicated a sense of nihilism and hopelessness about frailty rehabilitation, revealing a greater burden of cognitive and psycho-emotional frailty. Despite engaging in discussions about rehabilitation, several participants indicated a strong desire for maintaining the status quo. Future planning and goal-setting were described as particularly challenging.

Discussion

This paper reports a novel and innovative qualitative enquiry into the perceptions, expectations and rehabilitation preferences of patients who are living with advanced CKD and frailty. It also provides unique insights into the roles of caregivers in supporting people with CKD/frailty. Crucially, frailty assessment was found to be acceptable where it offered opportunities to engage in frailty rehabilitation, and a sense of optimism that states of reduced physical function and frailty could be overcome by resilience and recuperation.

Engagement in frailty rehabilitation

Despite lack of attention by medical systems, patients with frailty and CKD demonstrated interest in frailty rehabilitation through a range of professional and self-sourced strategies. This work dispels the myth that people with frailty are disinterested or poorly engaged in frailty rehabilitation and identifies deeper knowledge of the resilience and recovery strategies employed in the context of frailty. Participants demonstrated insight into the vulnerability posed by frailty, the threat to autonomy and agency, as well as strong desire and demonstrated ability to overcome frailty manifestations. Participants expressed a strong sense of optimism for the possibility of frailty intervention and a commitment to improve physical activity and life participation. Importantly, frailty assessment was found to be beneficial and acceptable when it was felt to offer equitable access to rehabilitation opportunities.

Key attributes for successful frailty rehabilitation

Within this cohort of patients with CKD and frailty, experiences of formal exercise programs such as cardiac rehabilitation were frequent and informed many of the experiences of recovery. Aligning with the recommendations of many professional bodies, participants endorsed the use of individualised, graduated and supervised programs that offered feedback and motivation [16]. Participants also offered novel insights into key attributes for successful rehabilitation interventions, including a need for social interaction and peer-to-peer support, informational and educational needs, directed by informed and multidisciplinary professionals who were familiar with the CKD/frailty experience. Furthermore, participants endorsed program design that offered self-monitoring and self-sufficiency, reflecting on the safety and confidence that followed observed progress. There was an identified need for longitudinal programs that could accommodate interruptions by hospitalisation and fluctuations in health status characteristic of the CKD/frailty experience. Participants strongly endorsed the use of strategies to improve or maintain cognitive performance. The Japanese Society of Renal Rehabilitation defines renal rehabilitation as “a long-term comprehensive program consisting of exercise therapy, diet therapy and water management, drug therapy, education, psychological/mental support etc. to alleviate physical/mental effects based on kidney disease and dialysis therapy, prolong life expectancy and improve psychosocial and occupational circumstances [17]. Its published guidelines emphasise the importance of addressing the psycho-emotional-social needs of this patient population, recommending a comprehensive, multidisciplinary model that “exhausts all support options to help kidney disease patients smoothly achieve social rehabilitation instead of simply implementing exercise therapy”. Despite this commitment to holistic care, the Guideline remains primarily focussed on exercise therapies. To date few – if any – frailty interventions have offered this holistic and patient-centred model of care, perhaps accounting for the lack of efficacy and limited durability reported to date. Notable for its effect on self-efficacy as well as durable impact 6 months beyond the end of the intervention, Yamaguchi and colleagues’ haemodialysis exercise trial demonstrated considerable flexibility in its program and offers a pilot study for future work in this field [49]. A small pilot study of concurrent exercise training or cognitive challenge utilising tablet-based “brain games” demonstrated that either exercise or cognitive training preserved psychomotor speed and executive function compared to standard care [50]. A further larger randomised controlled trial evaluating the impact of concurrent intradialytic physical and cognitive training has been proposed [51]. We note, however, the focus on intradialytic exercise in these studies, and the strong preferences expressed by our study cohort for inter-dialytic activity. Within the geriatric literature, randomised controlled trial data supports the use of multi-component exercise interventions that incorporate social, nutritional and cognitive elements for effective improvements not only in frailty, but also cognitive performance, emotional support and social networking among frail and pre-frail community-dwelling elderly [52,53,54]. Crucially, these studies are notable not only for their impressive outcomes, but also their high degree of patient adherence, suggesting that interventions that are fit-for-purpose have high patient acceptability and enhance prolonged participation.

Symptom burden and impact on participation

Our results have important implications unique to the care of patients with advanced kidney disease and frailty. In our study, we describe high rates of CKD/frailty symptomatology which act as a chief barrier to physical activity. Participants frequently reported pain, dyspnoea, fatigue, exhaustion and disturbed circadian rhythm. This report of patient experiences aligns closely with patient perspectives revealed by the SONG initiative, including the debilitating and exhausting burden of dialysis, the cycle of post-dialysis exhaustion, inhibited rest, lack of remedy or relief from symptom burden, restricted life participation, diminished relationship roles and dependence on others [55]. While many participants demonstrated resilient strategies to overcome these impediments, successful rehabilitation strategies must incorporate symptom assessment and management into their care models. This calls for a range of multidisciplinary and experienced clinicians who are willing to engage not only in frailty and rehabilitation, but also pain and symptom management as well as addressing psycho-emotional-social needs. A collaborative healthcare model should include nephrologists, renal supportive care physicians and pain specialists, rehabilitation therapists and exercise physiologists, dietitians, nursing specialists, social workers, psychologists, occupational therapists and pharmacists to truly meet the needs of this patient population.

Consumer design and peer support needs

Just as the SONG initiative prioritises patient perspectives, our study utilises consumer engagement to inform the design of an innovative frailty intervention. Our qualitative methodology recognises consumers as experts in their own care and active participants in the delivery of successful frailty rehabilitation. Participants recommended the use of peer-to-peer support and education, deriving benefit from lived experienced and social engagement. Recent systematic review suggests that exercise programs involving peers can promote and maintain adherence to exercise programs [56]. Participants reflected that discussion about physical activity promoted uptake of physical activity, identifying a key role for clinicians as well as peer navigators. Future work should also explore how clinicians might seek to reinforce intrinsic motivation, which has been shown to predict long-term engagement with physical activity, including in chronic pain settings [57, 58].

The role of caregivers in frailty rehabilitation

This study also offers novel and valuable insights into the role of caregivers as key support people in promoting frailty recovery. Caregivers were seen to validate the lived experience of frailty and advocate for the need for frailty interventions. Caregivers also emerged as strategic goal-setters, endorsing life participation and social re-integration. Future work should explore how frailty intervention impacts caregiver burden and wellbeing.

Limitations and reflexivity

The findings of this study should be interpreted with some caution. The views of participants reported here reflect the perspectives and preferences of a cohort of patients attending a single Metropolitan centre. Participants with functioning kidney transplant and those undertaking peritoneal dialysis were not represented in our study cohort and thus findings may not be generalised to these patient groups. While methodological approaches allowed purposive sampling of diverse patient demographics, cultural understandings of frailty and priorities for care remain to be fully understood. Primary investigator AK is a member of staff at the research setting and thus shared a clinical relationship with some of the participants through either nephrology clinics or renal supportive care encounters. It is possible that participants, either consciously or subconsciously, felt an expectation that by participating in discussion about rehabilitation options, that they would be able to access rehabilitation and additional care. This speaks to the moral imperative of researchers in this field to engage in and commit to interventional, not just observational, work. The key attributes of a frailty intervention offered by this work should allow development and inform the design of future interventional trials for frailty incorporating flexible group exercise training not limited to intradialytic exercise.

Conclusions

This study offers key attributes for successful implementation of frailty rehabilitation in the CKD context. To our knowledge, this is the only existing study to explore patient and caregiver perspectives and priorities for frailty remediation. Our example of patient activation promises opportunity to codesign a durable fit-for-purpose intervention for frailty that addresses psycho-emotional-social needs alongside symptom burden and physical frailty. Frailty assessment was found to be acceptable where it afforded opportunity to engage in self-directed care. We reveal a range of resilience strategies alongside a strong sense of optimism for frailty recovery shared by participants. Healthcare providers and policy writers must embrace the possibility of frailty recovery. Until there is evidence to the contrary, we owe it to our resourceful patients to thoroughly investigate frailty interventions.