Health professional experiences of kidney transplantation in regional, rural, and remote Australia

Abstract

Background

Despite the demonstrated improved patient survival and financial benefits for health services with kidney transplantation compared to dialysis, populations outside of urban areas face inequities in access and a more difficult journey to kidney transplantation than their metropolitan counterparts. This study aimed to explore the experiences of Australian kidney transplant health professionals regarding kidney transplantation processes for patients residing in regional, rural, and remote areas, with a focus on improving access to and experiences of transplantation for this patient cohort.

Methods

Semi-structured interviews were conducted with Australian kidney transplant health professionals. Transcripts were analysed thematically.

Results

Interview participants (n = 26) consisted primarily of nephrologists from transplanting centres (15%), nephrologists from regional, rural, or remote non-transplanting centres (19%), clinical pharmacists (19%), and nursing staff (19%). Six main themes were identified regarding barriers to transplantation, including ineffective communication and education, overwhelming geographical burden, fighting for equal opportunities, paucity of social support, crushing financial peril, and deprived of adequate local care. Participants also made recommendations for new or modified service delivery models to address identified barriers, including coordination of work-up testing, outreach visits for transplant assessment, increased social and financial support, and increased and earlier provision of transplant education.

Conclusions

Health professionals described patient-specific and system level barriers to kidney transplantation for regional, rural, and remote populations in Australia that could be addressed or improved by the modification of current processes or implementation of new service delivery models for provision of transplant care.

Background

It is estimated that 45% of the total global population resides outside of urban areas [1], with approximately 29% of the Australian population living in regional, rural, or remote areas [2]. The estimated global prevalence of chronic kidney disease (CKD) is > 10% [3, 4], and rural and remote populations worldwide have much higher rates of CKD, kidney failure (KF), and associated mortality compared to those in metropolitan cities [5,6,7].

The cost of dialysis as a kidney replacement therapy (KRT) modality presents an increasing health resourcing burden, with the average annual cost of in-centre haemodialysis in Australia ranging from AUD$85,000-AUD$124,000 per patient depending on dialysis facility geographical remoteness [8]. Alternatively, kidney transplantation offers significant financial benefits for health care systems [9] as well as improved quality of life and overall survival rates for patients, when compared to dialysis [10]. Lack of access to kidney transplantation therefore has significant implications. Whilst preemptive kidney transplantation is being increasingly used in countries across Europe as a way to reduce delays to transplant, avoid dialysis and achieve improved transplant outcomes [11], KF patients in Australia must have commenced on dialysis in order to be eligible to receive a deceased donor transplant [12].

Regional, rural, and remote patients across the world are less likely to be waitlisted for or receive a kidney transplant, despite the increased burden of CKD and KF [13,14,15]. Indigenous populations are also far less likely to receive a kidney transplant [16], a disadvantage that is further exacerbated by residing in rural or remote areas [17]. For those who do receive a kidney transplant, they usually spend longer on dialysis prior to waitlist activation [18], which is associated with worse long-term outcomes and overall survival post-transplant [19].

In Australia, the delivery of specialist kidney transplant services occurs via a hub-and-spoke model, with almost all current transplant units based in metropolitan hospitals [12]. With regards to potential or actual kidney transplant recipients from regional, rural, or remote areas, provision of care is therefore a shared responsibility between the transplanting centre and the home nephrology service. The kidney transplant centre reviews the patient with regards to determining their eligibility for transplantation, as well as providing care in the peri- and acute post-transplant period, whereas the regional, rural, or remote home nephrology service facilitate the work-up process and provide care pre-transplantation as well as the long term care post-transplant care [12].

For patients residing in regional, rural, and remote areas, many additional barriers to kidney transplantation have been identified, largely associated with the need to travel or relocate temporarily in order to access medical testing and transplantation facilities [20]. Previous studies looking at barriers to transplantation for rural and remote populations globally from the perspectives of health professionals, have focused on Indigenous populations specifically [21, 22], explored the perspectives of only nephrologists [23,24,25], or have investigated access to all forms of KRT [26].

The objective of this study was to explore the experiences of Australian kidney transplant health professionals regarding kidney transplantation processes for all patients residing outside of metropolitan areas. The focus was understanding the current barriers to kidney transplantation and identifying ways in which access to, and experiences and outcomes of kidney transplantation could be improved for patients in Australian regional, rural, and remote areas.

Methods

Study design and participant selection

One-on-one semi-structured interviews were conducted with a multidisciplinary cross section of kidney transplant health professionals including nephrologists, transplant nurses, clinical pharmacists, and other allied health or support staff. Health professionals based in kidney transplantation units, as well as regional, rural, or remote healthcare facilities providing pre- and post-transplant care within Australia were eligible. Geographical remoteness of participants was defined according to the Modified Monash Model (MMM) 2019 using principle place of practice location [27]. Sampling was via a purposive non-probability method to ensure the research objective was answered, and participants were selected for recruitment by the investigators to ensure a sample that was representative of the transplant health professional population. Given the provision of care to regional, rural, and remote kidney transplant units is shared, the investigators felt it was necessary to include participants from both the metropolitan based transplanting centres, as well as those from the regional, rural, or remote home nephrology services. However, to ensure that participants were able to adequately answer the research objective they were only eligible to participate if they had direct involvement in the provision of care to regional, rural, and remote kidney transplant recipients specifically. Written consent was obtained from all participants and verbally reconfirmed prior to commencing their interview. Further information regarding recruitment can be found in Supplementary Material 1. Multisite ethics approval was granted by the Townsville Hospital and Health Service Human Research Ethics Committee (HREC/2023/QTHS/89342). This study was reported following the Standards for Reporting Qualitative Research (SRQR) [28].

Data collection

A semi-structured interview guide was developed based on findings of a scoping review [20]. The interview guide (Supplementary Material 2) was reviewed and discussed with all members of the research team and two pilot interviews were conducted to ensure content clarity and value of response data in addressing the research objective. These interviews were undertaken by the principal investigator using online videoconference platform Microsoft Teams (MS Teams, Version 24231.507.3099.9636, Microsoft, Redmond United States) which also recorded and transcribed the interviews verbatim. Transcription records were manually checked against the recordings by the principal investigator to ensure accuracy. Data collection ceased once data saturation was achieved, with no new themes identified. A total of 26 interviews were conducted over a 3-month period from April to June 2024 and all participants were provided with a $20 gift voucher to compensate them for their time.

Data analysis

Interview transcripts were analysed using a descriptive thematic method following the Braun and Clarke framework [29, 30]. Data were imported into NVivo (NVivo, Version 12, Lumivero, Denver United States), and both inductive and deductive coding used to identify the relevant and recurrent themes and develop associated theories. Initial deductive codes used were obtained from the findings of the scoping review [20], and then further developed during the iterative analysis process. Review and coding of the data was carried out by the principal investigator, with a second investigator confirming interpretation and coding by independently reviewing sections of data [31, 32]. Refinement of the coding scheme was discussed between the investigators until consensus was reached.

Results

Interview participants (n = 26) included nephrologists from transplanting centres (15%), nephrologists from regional, rural, or remote non-transplanting centres (19%), clinical pharmacists (19%), and nursing staff (19%). Most participants (73%) had > 7years of experience in their profession, and just over half (54%) were based in regional, rural, or remote areas. Most participants (65%) reported using telehealth as a modality for provision of transplant care in their roles. Demographic characteristics of participants are included in Table 1.

Table 1 Demographic characteristics of participants

With regards to the barriers and difficulties faced by regional, rural, and remote patients in accessing kidney transplantation, identified themes, subthemes and illustrative quotations are presented in Table 2. Participants also provided recommendations for new or modified service delivery models, summarised in Table 3. Themes identified centered around communication, geographical distance from treatment, healthcare inequities, social and financial disadvantage, and lack of local services.

Table 2 Themes and subthemes identified and illustrative participant quotations

Table 3 Participant recommendations for new or modified service delivery models and existing examples

Ineffective communication and education

Overcoming limitations of telehealth

Participants had concerns around the utility of telehealth, as “with some people you can’t do Teams, so there’s a cohort of patients who don’t have the IT literacy”. Others also pointed out the limitations of telehealth, stating “it’s actually very difficult to do a thorough review and assessment of a patient via telehealth”. Participants reported “this patient cohort is very challenging to build rapport and to communicate with over a computer in a telehealth scenario”.

Language and cultural barriers

Language barriers were commonly cited as contributing to poor communication between clinicians and patients, as “for some of them English is not their first or even second language, so that can be difficult”. Participants also highlighted barriers due to cultural differences, as “they might feel shame” or fear around asking questions about transplantation. Participants felt “they’re not used to trying to manage their healthcare in such a structured way” when it comes to the many tests and appointments required as part of the transplant journey.

Limited awareness of treatment options

Participants highlighted that often patients “have no expectation that they could be considered for transplant”, demonstrating a lack of awareness around transplantation as a potential treatment option. They felt there is sometimes misinterpretation or unrealistic expectations around transplantation processes and outcomes, particularly as “patients might not understand that after having a transplant, they’re not necessarily free to go back home and stay home, that it does still involve still frequent visits to a hospital”. Participants also highlighted that “when patients are on dialysis, their cognition is not at the best” and there were concerns around how this may limit their ability to engage with discussions around transplant and education provided.

Frustration with education provided

The delivery of transplant education was frequently cited as being problematic for this patient cohort, with one participant explaining “I’ve had them dial into those transplant webinars that they do for the patients, too high level. I had to basically sit through and explain everything”. There was also frustration around the format of delivery, as “it needs to be more than once, all the information needs to be repeated and repeated and repeated”, because “patients cannot retain everything that they’re told in a one-off seminar, they just don’t have the background medical knowledge to do it”.

Overwhelming geographical burden

Struggling to access to work-up and assessment

Participants highlighted the difficulties faced by these patients in terms of being able to access the required tests for transplant work-up and assessment, including the need for recurrent travel given “these patients live thousands of kilometers away from where they can get their cardiac investigations, or the bone mineral density scan”. One participant emphasised that “if people are 8 hours away from [metropolitan city] to ask them to come down for a transplant assessment clinic, that’s not so reasonable”. The long wait times associated with publicly funded healthcare services for things like cardiac screening and dental was also mentioned, as “some of the wait lists are quite long”.

Coping with trying circumstances

The issue of patients and carers having to navigate unfamiliar cities and health services when travelling to transplant facilities was frequently mentioned, with one participant stating “when patients come down from [state] to us, they’re petrified, absolutely petrified because they’ve never been to [metropolitan city] before, they’ve never been to the hospital before. They might not have even flown on a plane before.” The difficulties transporting patients to transplant facilities in a timely manner was also cited as an issue, with one participant explaining “ischaemic time is a problem. For our guys from [remote area] to get down there, you’re looking at no less than 12 hours to get down there.”

Dislocation from home, country and family

In addition to the logistic issues around distance, participants also emphasised the emotional and psychosocial toll on patients “being off country and away from supports, specifically at a time when there’s a large and stressful event that’s happening”. One participant also highlighted how isolation from loved ones and community can lead to risky behaviours that may ultimately affect patients’ health and wellbeing, stating “they’re ripped away from family and country. They get angry, they get sad. Some people turn to drinking”.

Fighting for equal opportunities

Perpetuation of institutional racism

Participants noted the ongoing lack of investment when it comes to ensuring equitable access to kidney transplantation for Indigenous Australians. One participant acknowledged “there are technical comorbidity associated challenges” but pointed out “yet people get transplanted with those comorbidities in inner city [metropolitan city], but not if you’re black in [remote area].” It was also noted that “we collocate Indigenous status and non-compliance” even though “underlying that is this under communication and miscommunication.” One participant highlighted the perceived difficulties around living donor kidney transplant (LDKT) for Indigenous Australians, sharing an experience where they believed it was “blocked” by the transplanting centre because “they didn’t want an Aboriginal person as a donor”.

Gatekeeping transplant opportunities

The tendency for transplanting centres to gatekeep when deciding patients’ eligibility for transplant was highlighted by participants, who noted the inconsistencies in eligibility criteria. For example, “how can you smoke in [state] but you can’t smoke in [state] when the goal is the same?”. Participants emphasised “the longer they sit on dialysis, they just sort of end up getting more problems”, highlighting the drawn-out assessment process for rural and remote patients can ultimately affect their eligibility for transplant. The fact that transplant does not seem to be discussed with all patients was also raised by participants, who have been asked by patients “how come nobody’s ever talked to me about transplant?”.

Incomprehension of inherent disadvantage

When it comes to the metropolitan transplant centres’ eligibility assessment for this patient cohort, “it still seems like there’s a lack of understanding about where these guys are coming from and what they’ve been through and how hard it is to get them to that point”. It was also felt that there is a lack of acknowledgement from transplanting centres regarding the “completely different needs” of rural and remote patients, as “they need a lot more time and energy put into them than meeting them at transplant assessment clinic for 30 minutes”.

Paucity of social support

Seeking safe and reliable support

The difficulty associated with patients finding a suitable support person was highlighted, with one participant explaining “it’s trying to find someone that you think will be able to leave the community for two months or three months” as often the people who are identified as being a suitable escort will have work or family responsibilities of their own that they cannot leave.

Pervasive psychological distress

Participants felt that the psychological stress associated with going through a kidney transplant is a significant issue for these patients, highlighting “we’re talking about something that’s life changing”, but it is not without risk, so “are they going to come through the operation? are they going to survive?”. Another participant stated how important it is “to keep their emotional health safe” so they’re in the right mindset to look after their physical health also.

Reluctance to abandon responsibilities

For some patients, being able to find someone to manage the day-to-day responsibilities at home, while they are away can also present a barrier to transplant. As one participant pointed out “if you’ve got your own family back at home, who’s going to care for that family?”. For some patients “maintaining things like the childcare or the house or the bills or anything at home” or “caring responsibilities” may take priority over their own health.

Crushing financial peril

Contending with unexpected expenses

Participants highlighted some of the unexpected expenses associated with transplant that patients and their families are faced with, explaining “you might get your accommodation and airfare, or transport paid for, but then they have to pay for food, and they’re used to living off bush tucker or rice or something really cheap in the community that they share with family”. Another participant stated, “they have to fork out money to buy all the transplant medications and some of them are actually not financially prepared for that”.

Scarcity of financial assistance

The inadequacy of current subsidies offered through the public health system for travel and accommodation costs was frequently cited by participants as being out of touch with current costs of living. According to one participant “most accommodations here are between $140 up to about $220 (per night)”, yet “only $70 (per night) is covered for that accommodation”. One participant emphasised the additive effect of these out-of-pocket expenses over time, explaining “around $1,500 to $2,000 that you need in your pocket for that”.

Juggling competing priorities

Another issue contributing to the overall financial burden of transplant is the fact that many patients are managing other competing financial priorities, for example, “people who are working, who are living day-to-day, paying rent for where they live, paying a mortgage for where they live, and now they’ve also got this added expense”. Obligations to employers or businesses can also present an issue for some “if they can’t take time off work”, as that makes attending scheduled appointments difficult.

Deprived of adequate local care

Absence of skilled and stable services

Participants cited issues with available staffing and services as being significant barriers to providing local transplant care. Lack of support services like psychology, dietetics and physiotherapy were mentioned, with one participant explaining “I’ve got a few people with major trauma backgrounds, and there’s just nothing for them”. With regards to staffing one participant explained “very few local people have all the expertise, and then the people who do come, don’t stay”. Particularly in the more remote locations, participants said “we’re always liaising with different people who don’t understand what they need to be doing and the importance of getting this and that done”. Time constraints faced by clinicians was also mentioned by participants, “I wish I had more time to sit with them and talk about transplant”.

Concern around treatment delays

In many remote communities “they don’t have pathology on site, they just have i-STAT machines” which means only a limited range of tests can be completed. The potential consequences of having a significant delay in obtaining formal pathology results was highlighted by participants as a significant concern. One participant explained “it’s difficult from a medical point of view because we may have concerns on a blood test that’s taken 40–48 hours to receive and concerns about complications are high”.

Chaotic medication governance

There were significant concerns raised by participants around the complexity of ensuring ongoing medication supply in some rural and remote communities. Issues with transportation of medications was highlighted, as “they do get flights in there, but I mean you get a cyclone going through and you mightn’t have a flight that week”. Appropriate storage of medications can also be problematic, as one participant explained “it’s hot as hell up there and not everyone has a fridge in their house or electricity”. Some participants were also concerned about the “lack of healthcare professionals in certain regional areas that have an understanding of the importance of medications post-transplant” as well as the burden associated with “making sure they’re not changing brands of medications, because that’s become such a challenge when they go back to community pharmacies”. The additional risk associated with having multiple care providers and prescribers was described, with one participant explaining how this has caused medication discrepancies and errors as they all “use a different electronic medical record so they will have a different medication list”. Concerns were also raised around inexperienced clinicians adjusting medication regimens for transplant patients, because if they “don’t have an understanding of tacrolimus, a mistake can happen there”, emphasising that “there’s just all these areas where mistakes can happen”.

Discussion

The objective of this study was to explore kidney transplant health professional perspectives to understand current barriers to kidney transplantation for patients in regional, rural, and remote areas of Australia, and to identify ways in which access, experiences and outcomes could be improved. Health professionals in this study explored numerous patient specific and system level barriers to kidney transplantation stemming primarily from the overarching lack of locally available services and financial and social disadvantage experienced by these patients. The connection between the identified themes in this study are displayed in Fig. 1.

Fig. 1

Thematic schema displaying relationships between identified themes

Unsurprisingly, health professionals who were based in, or had experience providing care within rural and remote communities had a more comprehensive understanding of barriers to transplantation at the local level and the adversities faced by this patient population. Many of the barriers explored in this study resemble those discussed by health professionals worldwide in previous studies. In a study looking at access to all forms of KRT for rural populations, issues around extensive travel, financial stressors, lack of social support, and inadequate local resources were mentioned by clinicians [26]. Similarly, in North America it has been found that inadequate social support, geographical distance, communication and education difficulties, as well as limited local healthcare resources are also major barriers to kidney transplantation for rural and remote populations [21, 23, 24]. In Europe, many of the same patient level and system level barriers have been identified with regards to accessing all forms of organ transplantation [33, 34]. Once again, issues around lack of social support, financial strain, distrust of health systems and inadequate education (patient level) and lack of resources and support staff (system level) are highlighted [33, 34], supporting the findings of this study. However, the concept of inequities in waitlisting and bias against certain patient groups explored in this study, has previously only been discussed in the context of ethnicity (such as Indigenous or migrant populations) [22, 35, 36], or LDKT specifically [37].

This study also provides a range of recommendations from participants for addressing barriers to access and improving experiences of kidney transplantation for regional, rural, and remote populations (Table 3). The recommendation around earlier discussion and referral for transplant as well as earlier commencement of transplant education is in line with Kidney Disease Improving Global Outcomes (KDIGO) guidelines for management of transplant candidates, which recommends commencing transplant discussions once eGFR < 30mL/min/1.73m² [38]. However, timely referral for kidney transplantation can be hindered by the inherent disadvantage faced by rural nephrologists, as they are removed from transplant units, have smaller groups of physician colleagues and limited access to professional development and education opportunities [23]. With regards to changing the way transplant education is delivered, the National Indigenous Kidney Transplantation Taskforce (NIKTT) and the Queensland Kidney Transplant Service (QKTS) have trialed the use of more culturally appropriate education formats for Indigenous Australian patients, including the use of yarning circles and tailored written resources with promising findings [39,40,41]. Improved communication and education for potential transplant candidates has also been highlighted as a priority for action across European countries as a strategy improve access to transplantation [33]. Several other studies have tested novel transplant education delivery programs or formats, also with positive results with regards to patient acceptability and some improved post-transplant outcomes [42, 43].

Coordination of transplant work-up testing was a recommendation made by participants and this has also been trialed previously in the United States, with significantly reduced time to transplant waitlisting for patients [44]. A kidney transplant centre in New Zealand has also recently implemented a one-day work-up program, significantly increasing the number of patients waitlisted for transplantation [45]. Outreach visits by the transplant team for assessment and education was recommended in this study, with some reporting that this is already part of the standard provision of transplant care within their health services. Outreach visits for kidney transplant assessment was another intervention trialed by NIKTT, which led to an increase in patients commencing work-up and becoming active on the waitlist, as well as increasing the number of patients transplanted [39, 40]. Increased financial support for patients and their families was recommended by study participants, with existing studies and support/subsidy schemes including living kidney donors only [46, 47]. However, there are existing services within Australia that provide transport and/or accommodation for patients with no out-of-pocket expenses, while they are away from home accessing health services, although it is important to note that some of these services are available for specific patient groups only [48, 49].

Increased psychosocial support was a recommendation of this study, including the addition of a health professional ‘navigator’ role and more culturally appropriate support staff for Indigenous Australian patients. Several of these programs were trialed by NIKTT in different locations, however staffing issues and COVID-19 restrictions significantly impacted these projects [40]. Again, this is a service that is already offered by some Indigenous-run kidney health services [49]. The recommendation for increased use of ‘peer mentors’ or ‘patient mentors’ as a valuable source of support for patients both pre- and post-transplant was frequently mentioned, and is a resource routinely used within some kidney health services [50]. Studies investigating the use of ‘patient mentors’ in the kidney transplant space have yielded positive results for both the mentors and mentees, with positive experiences for both and improved access to transplant work-up and waitlisting [39, 40, 51].

It was clear in this study that increased local services and resources are needed. While telehealth is a modality that garners mixed reviews, based on recommendations from this study and existing research it appears that there is still a role for its’ use in improving access to kidney transplant care if used in appropriate settings [52,53,54,55]. However, this does not replace the need for face-to-face local services, especially given nephrologists practicing in rural settings are more likely to consider the complexities of post-transplant management in the absence of local transplant services when deciding whether to refer patients for KT [23]. The delivery of community-focused multidisciplinary specialist kidney care within remote communities has also been shown to increase consumers engaging a service that was previously only offered via telehealth [56].

The recommendation of individualising immunosuppressant regimens for rural and remote kidney transplant populations is still a developing concept. Thus far, pharmacogenomic screening along with other novel diagnostic tools have been used to successfully develop personalised immunosuppressant regimens [57,58,59], although further trials are required to clarify beneficial clinical outcomes. Furthermore, a trial is underway investigating the feasibility and acceptability of a culturally tailored diet and exercise intervention in the early post-transplant period [60].

Regarding a new regional kidney transplant service that is currently in development for North Queensland [61], participants made specific recommendations around building a safe and sustainable workforce. These included the need to secure required non-nephrology specialist services, recruitment of experienced clinicians to ensure provision of a non-inferior service, safe rotational rostering of on-call staff to prevent burn out, and the need for collaboration with established transplant services to provide support.

This study presents comprehensive insights from a diverse cross section of kidney transplant health professionals across Australia, including many different classes of remoteness and stages of professional experience. The investigators strived to recruit a representative sample to minimise any potential bias associated with the results and increases translatability of the findings. However, the proportion of support staff (such as social workers and Indigenous liaison officers) involved in direct transplant care that participated was relatively small, an outcome that has been seen across other similar studies [62] likely reflecting the identified workforce shortages in these areas. Similarly, participants based specifically in rural and remote areas also made up a small proportion of overall participants, likely a reflection of the hub-and-spoke model of transplant care provision [12] as well as workforce shortages in these areas, and also seen across other similar studies [62]. The inclusion of health professionals based only within Australia may reduce the transferability of the findings internationally, particularly for low- to middle-income countries or those with significant differences in health system structure or funding.

Conclusion

Kidney transplant health professionals described patient-specific and system level barriers to kidney transplantation for regional, rural, and remote populations in Australia that could be addressed or improved by the modification of current processes or implementation of new service delivery models for provision of transplant care. The findings of this study may support translation to changes in the provision of transplant care for this patient cohort at both a clinical practice and health policy level, however further qualitative studies are also recommended to explore the perspectives of kidney transplant recipients.