Health professionalsCharacteristics of survey participants

Of the 82 responses received from eligible health professionals, participants included nephrologists from transplanting centres (18%), nephrologists from regional, rural, or remote non-transplanting centres (18%), clinical pharmacists (20%), nursing staff (24%), and other health professionals (20%). Over half of the participants were based in regional, rural, or remote areas (56%) and had > 7 years of experience in their profession (55%). Detailed demographic characteristics are presented in Table 1.

Table 1 Demographic characteristics of health professional participantsHealth professional experiences

Nephrologists (98%) reported discussing living donor kidney transplantation as an option with all potential KT recipients. Figure 1 provides a summary of participant Likert scale responses. Most nephrologists (83%) felt that targeted education to increase awareness around KT as a treatment option would increase transplantation rates in regional, rural, and remote patient populations. However, nephrologists working in transplant centres were more likely to agree with this statement compared to those in non-transplanting centres (p = 0.04).

Fig. 1

Health professional opinions around improving kidney transplant processes for regional, rural, and remote transplant recipients. Participant responses to Likert scale survey questions (n = 81)

Nephrologists (97%) and nursing staff/other health professionals (97%) agreed that receiving support or mentoring from other KT recipients would be beneficial for potential recipients. Over half of the nephrologists (60%) agreed that there is a balance between considering the potential benefits of a transplant for an individual patient, versus maximising the utility of donor organs when determining a patient’s eligibility to receive a transplant. However, nephrologists with > 7 years’ experience were more likely to agree with this statement compared to those with < 7 years’ experience (p = 0.01).

All pharmacists agreed that increased provision of medication information prior to transplant would be beneficial for potential recipients. Most pharmacists (73%) also felt that regional, rural, and remote KT recipients often experience difficulties obtaining ongoing supply of medications post-transplant. However, pharmacists based in regional, rural, or remote centres were more likely to agree with this statement compared to those based in metropolitan areas (p = 0.01).

When comparing the Likert responses to questions asked across both nephrologists and nursing staff/other health professionals participant groups, years of experience (p = 0.006) and profession (p = 0.02) were found to have a significant effect on agreement. Nephrologists and nursing staff/other health professionals with < 7 years’ experience were more likely to provide an ‘agree’ response than those with > 7 years’ experience (OR 0.22; 95% CI 0.08, 0.61). As a profession, nursing staff were more likely to provide an ‘agree’ response than nephrologists and other health professionals (OR 0.19; 95% CI 0.05, 0.76). Online Resource 3 includes full SPSS analysis output.

Kidney transplant recipientsCharacteristics of survey participants

A total of 77 responses were received from the 120 transplant recipients eligible to participate, achieving a response rate of 64%. Most participants received a deceased donor KT (82%) and had been on dialysis for > 1 year at the time of receiving their transplant (78%). Almost a third of participants were residing in rural or remote areas prior to transplant (30%), and a quarter identified as Indigenous Australians (25%). Detailed demographic characteristics are presented in Table 2.

Table 2 Demographic characteristics of kidney transplant recipient participantsKidney transplant recipient experiences

The option of receiving a transplant from a living donor was discussed with only 73% of participants, and Indigenous Australians were less likely to have living donor KT discussed with them compared to non-Indigenous participants (p = 0.02). When asked to list in order of importance from 1 to 10, participants most frequently rated information prior to transplant, potential medication side effects, high financial costs incurred related to treatment, and access to ongoing medication supply as the most important aspects in relation to their own personal KT experience (Online Resource 4—Supplementary Fig. 1).

Figure 2 provides a summary of participant Likert scale responses. Most participants (81%) felt that the time they waited to receive a transplant was reasonable, however those who had been on dialysis for > 3 years at time of transplantation were less likely to agree with this compared to those on dialysis for < 3 years (p ≤ 0.001). There was a trend in the data suggesting an association between Indigenous status and a longer time spent on dialysis prior to transplant, however this was of borderline statistical significance (p = 0.05). Indigenous Australians were more likely to agree that residing further away from the transplant centre increased their wait time to transplant compared to non-Indigenous participants (p = 0.01). Indigenous participants were also more likely to be residing in a rural or remote area (p ≤ 0.001).

Fig. 2

Experiences of recent kidney transplant recipients. Participant responses to Likert scale questions around participants’ own kidney transplant experience and potential ways in which their experience could have been improved (n = 77)

With regard to time spent away from home to complete work-up testing (prior to transplant) having a negative effect on patients and/or their families, the proportion of ‘agree’ responses was similar across both Indigenous and non-Indigenous participants. However, non-Indigenous participants were more likely to disagree with this statement compared to Indigenous participants (p = 0.01). The effect of rurality was similar, with metropolitan and regional participants more likely to disagree with this statement compared to rural and remote participants (p = 0.01).

Only 35% of participants agreed that the financial costs associated with travelling to complete work-up testing prior to transplant had a negative effect on them or their family. A trend in the data suggests that living donor KT participants were more likely to agree with this compared to those who received a deceased donor transplant, however this did not achieve statistical significance (p = 0.06).

There was an overall negative response from participants regarding the suggestion of telehealth for delivery of education and provision of medical appointments, with most reporting they would not prefer this option over travelling to attend in-person education (64%) or medical appointments (69%). Most participants (71%) agreed that receiving information and support from someone with lived experience of KT would have been beneficial. Almost half of the participants (45%) reported that the financial cost of ongoing medication supply was burdensome, and concerningly over a quarter (27%) reported experiencing difficulties accessing ongoing supply of their medications post-transplant.

When responses to the Likert scale questions were compared, degree of rurality of participants (p = 0.02) had a significant effect on agreement. Participants residing in regional or metropolitan areas were more likely to provide an ‘agree’ response compared to those residing in rural and remote areas (OR 0.67; 95% CI 0.49, 0.92), suggesting an overall more positive transplant experience for the metropolitan and regional participants. Online Resource 3 includes full SPSS analysis output.

Qualitative responses

An open-ended question was posed at the end of the survey, which was consistent across both participant groups. This asked them to suggest a particular aspect of current KT processes (or their own transplant experience) that they would change to improve experiences and outcomes for regional, rural, and remote KT patients. Participant comments were thematically analysed together, and the identified themes and associated quotes are provided (Online Resource 5—Supplementary Table 1):

Enabling timely and flexible access to transplant assessment: Participants identified the need for a more coordinated and flexible multidisciplinary approach to managing work-up testing and provision of transplant assessment appointments. This would minimise time away from home and expedite waitlisting for potential recipients. Ideas such as “trying to group together assessment investigations and review to prevent need for recurrent travel” and “transplant assessment teams visiting regional areas” were suggested as potential models that would achieve this.

Aligning communication and education with patient needs: The need for more appropriate education commencing earlier was highlighted, along with the need for more effective communication between patients (and their families) and clinicians. One participant highlighted “there's no access to education about kidney treatments in the communities” while another sought “improved communication” and “better understanding from nursing staff” while going through the transplant process.

Reducing financial hardship: Increased financial support for patients and their families is needed to assist with travel and accommodation expenses, such as “more flexible support from patient assistance transport schemes”. Living expenses while away from home and ongoing costs post-transplant are also an issue. As highlighted by one participant “money is always tight for me, if I could have had the chance to save, but due to cost of living this was pretty much impossible”.

Fostering comprehensive psychosocial support: Participants highlighted the complexities around provision of psychological support, as it needs to be provided by both health professionals and culturally appropriate support staff. One participant stated “a nurse navigator type of person for these patients for transplant stuff will in my opinion make a huge impact” with another clarifying “our Indigenous patients need Indigenous Liaison Officer and Indigenous Health Workers to be included”. Some participants highlighted that “having someone to talk to who has already had a transplant would have been helpful”, indicating the sharing of lived experience is of value to other potential recipients.

Accessing safe and appropriate accommodation: Transplant recipients identified the need for “accommodation that was suitable to transplant patients” and one felt that “being adequately accommodated is an important part of recovery”.

Advancing post-transplant provision of care: The need for faster turnaround of pathology results was highlighted by participants, with one mentioning “currently there is a delay of 1–2 days to have a (tacrolimus) level return”. Streamlining accessibility and cost of medications post-transplant was also highlighted, with one participant suggesting we “nationally standardise the post-op supply of medication”. Participants also expressed a desire for better ongoing medical and psychological support post-transplant, with one wanting “more support with side effects of medication”.