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Transportation Burden Associated With Hemodialysis in Canada: A Qualitative Study of Stakeholders

Open AccessPublished:November 15, 2022DOI:https://doi.org/10.1016/j.xkme.2022.100571

      Abstract

      Rationale and Objective

      For patients requiring in-center hemodialysis, suboptimal transportation arrangements are commonly cited as a source of ongoing stress and anxiety and have been associated with a reduced quality of life and increased mortality risk. Transportation-related problems are especially pronounced in Canada given its size, low population density, and long, often snowy winters. The purpose of this research is to identify and better understand transportation options for hemodialysis patients in Canada and to describe stakeholder experiences.

      Study Design

      We used a qualitative descriptive research design to explore stakeholder experiences and perspectives of transportation to and from dialysis facilities.

      Setting and Participants

      Research participants were recruited from a large urban hemodialysis program in Western Canada and included 11 participants from a project group; 45 participants from an open forum and a survey of 8 social workers. Data collection occurred at a series of project group meetings and an open forum (n45). In addition, we asked 8 renal social workers based in major cities across Canada to comment on the provision of transport for patients in their area via email or telephone consult.

      Analytical Approach

      We used conventional content analysis to explore stakeholder experiences.

      Results

      Travelling to and from dialysis facilities remains a source of stress and anxiety for many patients and their families. Patients described several factors contributing to these feelings including: the challenges of physically getting to the treatment center, particularly in adverse weather conditions; being a burden on family and friends; difficulties accessing the treatment facility; issues with public transport; and financial worries related to high costs.

      Limitations

      Findings may not be relevant in low and middle-income countries and those with a warmer climate.

      Conclusions

      Without a concerted and collaborative approach to address the barriers identified here, it is likely that travel to and from in-center hemodialysis will continue to adversely affect patients’ quality of life.

      Index words

      Canadians benefit from a universal healthcare system, often termed ‘Medicare’. Despite providing a relatively comprehensive range of clinical services, Medicare has several limitations and inconsistencies that may adversely affect the patient experience. One such limitation is transportation for people travelling to medical appointments, as the costs incurred are not covered by the healthcare system. Although similar challenges may be experienced by patients in other countries, transportation-related problems are especially pronounced in Canada, given its large size, low population density, and long, often snowy winters.
      In 2017, over 24 000 Canadians were treated with maintenance hemodialysis; of these, 76% used in-center facilities including hospitals or satellite units.

      Moulton K., Helis E, Crain J, Severn M : Dialysis programs in Canada: Implementation considerations and funding practices. Ottawa: CADTH, 2017 (Environmental scan, no; 60). Available at: https://www.cadth.ca/sites/default/files/pdf/ES0304_Dialysis_Programs.pdf. Accessed 12 September 2021.

      Facilities are typically situated in urban and suburban areas. Patients living outside of these areas are required to organize their own travel arrangements, which can involve journeys of several hours. In some instances, patients relocate to be closer to a facility; however, this can be prohibitively expensive. Unlike travel related to the care of acute or most other chronic conditions, travel to attend hemodialysis treatments is often lifelong and is required 2-4 times a week. This represents a high treatment burden which often compounds a typically high illness burden and comes with a financial cost. Many hemodialysis patients are older, likely to have other chronic medical conditions including diabetes, cerebrovascular disease and coronary disease, and are affected by reduced mobility, frailty and impaired cognition.2 3 Patients can also experience severe symptoms during and following hemodialysis such as changes in cognition, cramps, extreme fatigue and hypotension

      Loud F, Jenkins K, Cockwell P: Dialysis Transport: Finding a way together, (2019). Kidney Care UK, Renal Association, British Renal Society and National Kidney Federation. Available at: https://www.kidneycareuk.org. Accessed 25 July 2022.

      which can affect their ability to drive or to use public transport. Further, patients on maintenance hemodialysis are likely to be in lower socioeconomic groups, retired, or unable to work, resulting in a low income. Fifty-five per cent of respondents on maintenance dialysis reported a household income of less than $35 000 annually and 22% an income of less than $20 000. In the same Canadian survey, 21% of respondents indicated that they had forgone food or basic necessities to be able to afford their treatment.

      The Kidney Foundation of Canada. The burden of out-of-pocket costs for Canadians with Kidney Failure. Canadian 1–8 (2018). Available at: https://kidney.ca/KFOC/media/images/PDFs/3-2-1-NAT-Burden_of_Out-of-Pocket_Costs.pdf. Accessed 25 July 2022.

      Suboptimal transportation arrangements are commonly cited as a reason for patients not adhering to their dialysis treatment

      Obialo CI, Hunt WC, Bashir K, Zager PG: Relationship of missed and shortened hemodialysis treatments to hospitalization and mortality: Observations from a US dialysis network. Clinical Kidney Journal 5(4), 315-319. DOI: 10.1093/ckj/sfs071.

      ,
      • Chan K.E.
      • Thadhani R.I.
      • Maddux F.W.
      Adherence Barriers to Chronic Dialysis in the United States.
      and while delays in transportation may be somewhat tolerable in the short term, for many patients transport issues are a source of ongoing stress and anxiety. Moist et al’s research found that longer travel times were associated with a reduction in patient reported quality of life, because of reduced time available to socialize with family and friends.
      • Moist L.M.
      • Bragg-Gresham J.L.
      • Pisoni R.L.
      • et al.
      Travel time to dialysis as a predictor of health-related quality of life, adherence, and mortality: Dialysis Outcomes and Practice Patterns Study (DOPPS).
      In addition, those travelling longer distances are more likely to experience transportation problems which contribute significantly to their treatment sessions being shortened and missed, and this is associated with an increased mortality risk.8,9,10.
      Issues related to transportation to and from in-center hemodialysis facilities frequently challenge patients and can adversely affect their experiences of healthcare and quality of life. However, there are limited studies that examine this issue among contemporary hemodialysis patients. The purpose of this research is to identify and better understand the current options for transportation to and from hemodialysis facilities and to describe stakeholder experiences. Improving our knowledge and understanding of the burden of transportation in relation to the different transport options and its effect on patients’ and their families may help policy makers and service providers to reconfigure and invest in services that better meet these patients’ particular needs.

      Methods

      We used a qualitative descriptive design to explore patients, families and health provider experiences and perspectives of transportation. Qualitative description research is primarily aimed at gaining insight and understanding of a phenomenon through the perspectives of those participants who have direct experience of it.
      • Bradshaw C.
      • Atkinson S.
      • Doody O.
      Employing a Qualitative Description Approach in Health Care Research.
      During the process the researchers aim to stay close to the ‘surface of the data and events’

      Sandelowski, M. Focus on research methods: Whatever happened to qualitative description? Research in Nursing &Health, 23, 334-340. (pp.336).

      and to provide an account of ‘experiences, events and process that most people (researchers and participants) would agree are accurate’.

      Sullivan-Bolyai S, Bova C, & Harper, D. Developing and refining interventions in persons with health disparities: The use of qualitative description. Nursing Outlook, 53, 127-133

      This type of research is usually undertaken with a view to stimulating a change or improvement, rather than to improve our conceptual knowledge.
      • Bradshaw C.
      • Atkinson S.
      • Doody O.
      Employing a Qualitative Description Approach in Health Care Research.
      The advantage of this approach is in gaining information directly from participants rather than using preconceived categories or theoretical perspectives.

      Participants and Setting

      The Patient interest in Kidney Services (PiKS) group (Table 1) was initiated to provide a forum through which people using and providing hemodialysis services could identify and address aspects of the service that could be improved upon. During the 18-month duration of the research, a small project group of patients, family members and healthcare workers (8-11 participants) met monthly. The group worked on a number of small projects aimed at improving patients’ experience of hemodialysis. These meetings were recorded on a digital recorder and transcribed. A monthly summary was produced to track the progress of the group. Recruitment to the PiKS group occurred on World Kidney Day at a public information event in a local hotel. A researcher (RL) gave out flyers inviting people with an interest in improving services for patients on hemodialysis. In addition, an overview of the research was presented to the hemodialysis administrative team including the executive director and the senior managers who cascaded the information to their clinical teams. Both patients and healthcare staff were advised to contact the researcher by email or telephone if they were interested in participating. The PiKS group organized an open forum to which the wider hemodialysis community was invited. Flyers were posted in hemodialysis facilities across the city inviting patients’ and their families to a one-day open forum to explore aspects of living with hemodialysis, in particular focusing on issues relating to transportation. Participants (Table 1) in both these groups were recruited through a combination of purposive sampling and snowballing. Travel expenses and parking passes were provided for the monthly meetings and the open forum (patient and family participants). Most of the data relating to transportation was collected at the open forum. Volunteer scribes were recruited from our wider research team via an email. Participants were included if they were patients on long-term hemodialysis (longer than 3 months), family members or staff working within kidney services, English speaking and over the age of 18. Written, informed consent was obtained at the first PIKS meeting and at the open forum. A third data source was a number of renal social workers (8) who worked in cities across Canada. An initial invitational email was sent through the Canadian Society of Renal Social Workers, who were invited to respond either by email or by telephone. This study was approved by the Conjoint Health Research Ethics Board at the University of Calgary, REB17-1599. The names of patient participants have been changed to protect anonymity.
      Table 1Demographics of research participants
      Characteristicnumber
      Demographics of PiKS monthly meetings (n = 11)
      Participants
      Patient5
      Family member2
      Social worker1
      Manager1
      Nurse practitioner1
      Researcher1
      Patient gender
      Male2
      Female5
      Patient dialysis vintage
      <11
      1-52
      >52
      Patient employment status
      Full-time/part-time0
      Retired3
      Medically retired2
      Demographics of Participants Open Forum (n = 45)
      Participants
      Patient20
      Family member17
      Social worker1
      PhD candidate3
      Researcher1
      Nurse3

      Data collection

      The open forum workshop was held in a local, further education college and included 6 focus groups with 45 participants. A pre-identified facilitator (members of our PIKS group) directed discussions in each group and a volunteer scribe made detailed notes at each table. A secondary part of the study involved renal social workers, based in 14 major cities across Canada (Calgary, Edmonton, Hamilton, Halifax, Kitchener, London, Ottawa, Saint John, Saskatoon, Thunder Bay, Toronto, Vancouver, Winnipeg, Yarmouth). Social workers were invited to comment on the provision of transport for patients in their area, specifically in relation to the following questions: how do patients travel to dialysis if they are unable to drive themselves; how much does this cost them; who provides the transport and how is it funded? Transcripts from the PiKS meetings were reviewed for data relating to transport.

      Data Analysis

      Patient, family and healthcare workers’ perspectives and experiences recorded at the open forum, the PiKS meetings and those of the social workers were transcribed, aggregated, summarized and organized by RL using NVivo software. Conventional content analyses

      Hsieh H, Shannon S. Three approaches to qualitative content analysis. Qualitiative Health Research (2005), 1277-1288, 15(9). Available at:

      was used to inductively identify codes directly from the text and these formed the emergent sub-themes and themes. These themes were reiterated a number of times as transcripts were re-read and further analysed. Two other members of the research team (JH and NV) independently reviewed a number of transcripts and the data display in relation to the codes and themes. The researchers discussed the themes to confirm the consistency of the data analysis and the appropriateness of the resultant findings (investigator triangulation). Codes and themes were also reviewed for feedback by the PiKS group and considered to be an accurate reflection of patient experiences and discussions during the open forum. Data provided by the social workers was organized into a display matrix and analysed for similarities and differences in transport provision (SM 1). All social work participants were sent an early copy of this manuscript to check that the findings included resonated with theirs and their patients’ experiences.

      Results

      Forty-five people participated in the open forum: 37 patients and family members, a social worker, 3 PhD candidates, a researcher (RL) and 3 nurses. In addition, 6 volunteer scribes were present (Table 1). Patients recognized that travel to and from hemodialysis facilities was an inevitable part of accessing life-sustaining treatment, but nearly all participants reported feelings of frustration and anxiety, irrespective of their mode of transport and/or the distance to their facility (Table 2). These were related to the challenges they faced in physically getting to and from their treatment center several times a week, but also included feelings of being a burden, difficulties in accessing the facility, issues with public transport and financial worries related to the high costs of transportation.
      Table 2Illustrative Quotes and Emergent Themes
      Themes and sub-themesIllustrative Quotes/examples
      Challenges of travelling to dialysis sessions

      Adverse travelling conditions particularly during the long winters: wind; snow and ice

      Living several hours away from their nearest facility

      Medical conditions which affect patients’ ability to drive, particularly fatigue

      Frailty and impaired vision, cognition, and reflexes which can affect ability to drive

      Stress of feeling like there is no alternative to self-driving, even when fatigued
      “I’m usually the first one out of our street in the morning, so I have to clear the snow to the end of the road, it’s a work out before I’ve even got there” (Male, 61 years, patient).

      “Sometimes we just have to miss it [dialysis session], the roads can be closed for hours.” (Female, 66 years, patient).

      “I counted once and there were 14 cars that had been blown off the road, it puts you off.” (Female, 57 years, patient).

      “I won’t drive on a dialysis day, I just can’t do it, I have done it but it’s not good, I think I am alright but then it hits me and I feel floored, I worry I will fall asleep and drive off the road.” (Male, 70 years, patient).

      “I’m feeling it now [the effects of hemodialysis]…sometimes I have to crawl from the car to get to the house [after dialysis], I know I can’t go on like this…I live with my mom, she’s 89, and [she is] probably the only reason I keep coming […] but there will be a time, and it’s coming soon, where I won’t be able to get out the car, then I’m done.” (Male, 70 years, patient).

      “When I was on regular dialysis, there was no way I could drive afterwards, I think it was too much for my body. Doing it slowly [over 8 hours] I didn’t feel so wiped out afterwards […]. I also didn’t want to keep relying on my wife to drive me, it was too much for her, she works full-time as well.” (Male, 61 years, patient).
      Burdening family and friends

      Patients’ guilt from inconveniencing family and friends who provide transportation 3 times a week

      Emotional burden of worrying about patients becoming unwell during the ride

      Physical burden of helping older or frailer patients get to and from the house/ca

      Family members’ guilt about not being able to help with transportation
      “There can be real anxieties around driving patients home following dialysis. People are worried that the patient will become unwell and they won’t know what to do”. (Social worker).

      “My wife works her shifts around my runs, I feel bad that she has to do that but it takes too long on the handi bus […]y ou never know exactly when they are going to come.” (Male, 70 years, patient).

      “I do wonder about some patients [ability to drive], you see them walking out of here following a run and I’m thinking…not sure you should be driving.” (Social worker).

      “I’ve had family members phone and tell me their worried about whoever driving, but it’s very difficult, especially if the patient has capacity.” (Social worker).
      Accessing facilities

      No ‘disabled’ or designated parking

      Long distance from car parks to facility entrance

      Slippery surfaces difficult, unsafe, and stressful for patients with poor vision, balance, weakness and frailty
      “I collapsed getting into my car, it was icy but I don’t remember falling […] I woke up on [on the ground] with a broken wrist.” (Male, 70 years, patient).

      “You can’t park anywhere near the entrance and so you end up with a bit of a trek and you’re not always feeling the best.” (Male, 61 years, patient).

      “Yeah, parking is not an issue for us, it is right outside [the facility] and free.” (Female, 57 years, patient)
      Difficulties associated with public & mobility-assisted transport

      Transport schedules inconvenient, not on time

      Long transportation times

      Difficulty applying for services

      No forum for feedback to transport company
      “I got fed up of waiting for mobility assisted transport, so I started using the Transit, which was okay for a while but then they changed the schedule and I had to catch 2 buses and then it just didn’t work with my runs and everything [dialysis schedule].” (Male, 70 years, patient)

      “[Mobility-assisted transport] is not always on time and then it messes up dialysis because the bus won't wait and then it needs to be rescheduled.” (Male, 81 years, patient)

      “Thank goodness I only have to use Calgary Access once a week, but even then, I live a 10-minute drive from the unit, it can take an hour and a half to get home.” (Male, 60 years, patient.)

      “I applied for [mobility-assisted transport] because I often struggle to walk from the car to dialysis because I am so breathless, but they didn’t think this was a good enough reason”. (Female, 49 years, patient).

      “There’s lots of paperwork if you want to use [patient transport] and it’s very difficult to get approved”. (Female, 66 years, patient).

      “There’s an 8 page application, which the social worker helps with, and then you have to go for an interview down town so they can check you really can’t use transit… why they can’t just trust what the social worker tells them I don’t know… and it is a real pain to get there.” (Male, 70 years, patient).

      “You have to turn up in person for the interview, someone gave me a tip and said don’t arrive on public transport because they’ll say, well you managed it today [to use public transport]. They don’t take into account how awful you feel before and after dialysis.” (Female, 66 years, patient).

      “I'd had an operation and I couldn't drive myself to dialysis, I'd asked at the [nurses] but they could only suggest [patient transport]. Well, if you’ve travelled in one of those, you know it is not very comfy, I still had the stiches in. In the end, my elderly father (74 years old) came from Saskatoon to help.” (Male, 52 years, patient).

      “I’ve made a number of complaints [about mobility assist] but never heard anything back, I wouldn’t be surprised if they didn’t pass them on.” (Male, 60 years, patient).
      High financial cost of transportation

      Costs for both vehicle and parking

      Home dialysis as a solution
      Male, 73 years old, has been on home hemodialysis for 7 years. He lives with his wife in Strathmore, a town 50km outside of Calgary. They have 1 daughter who resides in another province. He and his wife are retired and live on a fixed income. One of the reasons he chose home dialysis was the difficulties in travelling to his nearest facility in Calgary. Although he drives and has a car, the cost of travelling 300 km a week, in addition to the cost of parking, even with a subsidy, would be too expensive:

      “When I visit with my nephrologist, I have to make sure it’s at the beginning of the month, ‘cause otherwise I am waiting for my [monthly check]”.

      “Costs associated with operating and maintaining a car. Parking charges, income threshold is low ($24 000 CAD at time of this research) to qualify for assistance with costs associated with transportation to dialysis facilities. To qualify, patients have to disclose their finances which many patients find humiliating.” (Social worker).

      Challenges of travelling to dialysis sessions

      All participants mentioned the weather in relation to travelling to hemodialysis. Canadian winters are long and can last from October to April, with snow, wind and ice making driving conditions treacherous and stressful. Most patients and staff could recall at least one occasion when storms prevented travel to or from dialysis and occasions were described when patients, travelling home, were stranded in their cars for several hours or even overnight. For most patients, dialysis days are ‘long days’, typically including a 4 hour treatment session with travel time in addition. Patients who self-drive described reclaiming a certain amount of control over their treatment schedules and lives. However, this can also present challenges and patients described not always feeling well enough to drive, “Sometimes I just have to pull off the road and give it a while” (76 year old, male patient). Others changed their dialysis modality to home dialysis, so they could avoid driving on dialysis days, or to nocturnal dialysis (a gentler form of dialysis). Even though self-drive was the preferred mode of transport, patients still experienced it as a burden. Generally, it was the regularity of it and monotony of it, with no end in sight: “Same old, same old… here we go again, it’s depressing…really depressing.” (58 year old male patient). As patients aged and became less independent, they found they had to rely more on family and friends to transport them to hemodialysis sessions.

      Burdening family and friends

      Patients reliant on family or friends for transportation described feelings of guilt in burdening their family with driving them to dialysis, “It’s a lot to ask someone, they’ve got their lives too […] it’s like you’re both on dialysis” (84 year old male patient). Family members also expressed concerns, mainly in relation to situations where patients become unwell on the journey home.

      Difficulties accessing the facilities

      Parking and getting from the car to the dialysis facility were also identified as problems. Inner city healthcare facilities often do not have designated parking situated near the dialysis unit, and where these areas do exist, their layout does not always accommodate the physical limitations many patients have. Where facilities are situated within city limits, parking spaces can be hard to find and costs can be prohibitive. To save on parking charges, some patients try to use the local street parking, but describe difficulties in getting from their car to the facility due to their physical limitations and/or snow and ice.

      Difficulties associated with public transport

      Public transport can be an option for younger, fitter patients and is a cost-effective mode of transport for people living within city limits. However, for those living outside the city, this is not always an option due the absence of direct routes, high costs, and the infrequency of some services. In addition, waiting outdoors for transport in winter is not possible for some people. For those living outside of the city, transport options are limited and expensive.
      For patients with a confirmed physical disability who are unable to use public transport, subsidized, door-to-door mobility assisted services are provided within cities. While concessionary fares are offered for older citizens, those with a disability, and those on a low income, the costs of 6 journeys a week for people on a fixed income can still be substantial. Common complaints about the transport system included frequent delays and prolonged travel times. Patient transport is not limited to patients travelling to and from dialysis and there can be multiple 'drop offs' and 'pick-ups' at different facilities and addresses. These can significantly extend travel time for patients, turning a 10 minute journey into one that takes over an hour, adding extra ‘wasted’ time to an already long day. Patients and nursing staff recalled numerous occasions when patients reduced their treatment time to avoid re-scheduling their transport home: “If you miss your ride because your run’s delayed, the [transport] office will tell you it can be anytime within the next hour and a half before the bus comes round again. It can actually be longer than that. […] I’d rather cut my run time.” (Male, 41 year old). Participants shared a general frustration with mobility assisted transport and felt they had no recourse for poor experiences.

      High financial cost of transportation

      In addition to the costs of maintaining and running a car, parking can be expensive (Table 2). In some instances, charges varied across the city with patients at one facility paying $75 for a month's parking and those treated at another only being required to pay $25 per month. In facilities outside the city limits, parking was often free. Patients on nocturnal dialysis questioned why payment was still required at night when the carparks were largely empty. Although financial assistance is available for patients on a low income, social workers reported a significant proportion of patients are constantly worried about their financial situation. Many patients live within strict financial budgets, and unexpected costs, such as their car breaking down, can be an additional source of stress. One of the patients who attended the forum asked for travel expenses to be paid in advance as his check was not due until the end of the month.

      Social Workers perspectives on the transportation burden

      The social workers confirmed transport issues as an ongoing source of frustration, distress and depression for many patients, particularly those who require mobility assisted transport (Table 3). All provinces funded/subsidized transportation system for seniors and those on a low income, as well as a mobility assisted system for patients unable to use regular transport. A small number of travel grants are available, particularly for people in rural areas. However, financial support and government coverage varies leading to inequities across jurisdictions. In addition, to qualify for financial assistance, patients have to disclose their finances which many find humiliating. Several social workers expressed concerns about individual patients’ ability to drive following a dialysis session, but felt helpless in the absence of an alternative which would be palatable to the patients. Social workers also confirmed the prolonged travelling time required for some patients. For example, some patients in Alberta travel for 1-2 hours to their nearest facility, whereas in Manitoba, travel times for some could be as long as 2-3 hours.
      Table 3Pros and cons of different transport modes
      Self-drive
      ProsCons
      More control: Patients feel more in control when they can drive.

      Less time: No waiting for transport.
      Less safety: Patient fatigue post-dialysis and chronic medical conditions can affect their ability to drive.

      More stress: Patients experience stress from worrying about their ability to drive, particularly in inclement weather.

      More financial costs: of the vehicle, maintenance, and parking.

      Difficult access: Car parks can be some distance from the facility.
      Driven by family and/or friends
      ProsCons
      Easier access: Can be dropped near to the facility door.

      Less stress: Patients do not have to worry about their ability to drive.
      Patient guilt: Patients sometimes perceive that they are already a burden to their family and friends; relying on them for transportation 3 times a week accentuates this perception and can create feelings of guilt.

      Difficult access: As patients become older or frailer, family members report increasing difficulties for patients getting to and from the house/car. Also, no 'disabled' designated parking or 'drop off' zone in some units.

      More stress: Many relatives/friends driving patients to hemodialysis worry about the patient becoming unwell during the journey home.

      Family member guilt: Family members can feel guilty about not being able to help with transportation
      Public Transport
      ProsCons
      Lower cost: Can be cost effective if patient lives close to facility.

      Less stress: Less stressful for patients as professional drivers are familiar with driving in adverse weather conditions.

      Less time: Perceived to be associated with less waiting than government provided transport on shorter routes.

      More control: Those able found it liberating not to be reliant on disability transport.
      Difficult access: Distance to walk to catch bus, tram, train. Requires a certain amount of mobility to walk to the transit stops and from the transit stop home. Waiting at transit stops can be extremely cold in winter as very few are heated. Not door to door.

      More time: Most trips across the city involved at least one change of bus/tram prolonging travel time.

      Higher cost: Expensive for those living outside the city.
      Mobility assisted transport
      ProsCons
      Easier access: Service from patient’s door to door of facility

      Lower cost: Most inner cities provide a subsidized transport system with concessions for seniors and those on a low income. The fares for people travelling with mobility assisted transport typically pay the same rates as those using regular transport.
      Difficult access: Drivers are obliged to ensure door to door service. However, this does not mean to the internal doors of the dialysis unit, just to the entrance of the facility, which may be a hospital or a mall.

      Less convenient schedule: Patients will often shorten their dialysis session if they think they will miss their booked bus/transport. Arriving late for dialysis treatment due to transport delays or bad weather can mean a shortened or missed treatment, and/or a wait of several hours to be rescheduled.

      More time: Multiple drop offs can mean a patient living within 10 mins of their unit can be the last to be dropped off, which can take up to 2 hours.
      Private Hire
      ProsCons
      Easier access: service can be door to door.

      More convenient schedule: Patients report it is a generally reliable and direct service.
      Less safety: Drivers not able to help patients get in and out of vehicle.

      Higher cost.

      Discussion

      In this study, we found that patients treated by hemodialysis in Canada find travel to and from dialysis sessions stressful due to physical, logistical, emotional, and financial challenges. The findings of our study resonate with previous work on the burden associated with travelling to in-center hemodialysis facilities. An international study by the Dialysis Outcomes and Practice Patterns study (DOPPS)
      • Moist L.M.
      • Bragg-Gresham J.L.
      • Pisoni R.L.
      • et al.
      Travel time to dialysis as a predictor of health-related quality of life, adherence, and mortality: Dialysis Outcomes and Practice Patterns Study (DOPPS).
      concluded that longer travel times were associated with reduced HR-QOL and greater mortality risk. Similarly, travelling in a ‘transportation van’ or during inclement weather adversely affects adherence to treatment schedules and contributes to worse outcomes.
      • Chan K.E.
      • Thadhani R.I.
      • Maddux F.W.
      Adherence Barriers to Chronic Dialysis in the United States.
      To access their life-sustaining treatment, in-center hemodialysis patients face significant challenges related to fitness to drive, waiting times for public transport, long travel times and the costs of travel. Canadian hemodialysis patients face all these challenges and are further disadvantaged by inclement weather and the low population density, which means longer journey times.
      A recent study in Japan indicated that patients able to drive themselves had higher health related quality of life scores than those reliant on public/mobility assisted transport.
      • Moist L.M.
      • Bragg-Gresham J.L.
      • Pisoni R.L.
      • et al.
      Travel time to dialysis as a predictor of health-related quality of life, adherence, and mortality: Dialysis Outcomes and Practice Patterns Study (DOPPS).
      However, there are many unmodifiable barriers to self-driving, including chronic medical conditions, side effects from hemodialysis treatments, and the inability to afford a car.
      • Rattanasompattikul M.
      • Feroze U.
      • Molnar M.Z.
      • et al.
      Charlson comorbidity score is a strong predictor of mortality in hemodialysis patients.
      In recognition of these issues, many healthcare systems are deploying various strategies to improve patient access to transportation including: interagency partnerships; linking with rideshare transportation services such as Uber; and apps for patients that provide real-time updates on transportation options (Box 1).16.17.18 In response to patient-reported experiences of transport in the UK, the Dialysis Transport Working group have published a number of recommendations

      Loud F, Jenkins K, Cockwell P: Dialysis Transport: Finding a way together, (2019). Kidney Care UK, Renal Association, British Renal Society and National Kidney Federation. Available at: https://www.kidneycareuk.org. Accessed 25 July 2022.

      including that the cost of travel to dialysis sessions should be paid by the healthcare system and be included in the patient’s plan of care. In addition, key performance indicators of services should include patient experiences and feedback to assure the ongoing quality of services.
      Potential solutions to improve stakeholder experiences
      What’s new?
      There is evidence that in some areas new ways of providing transport services are being explored. Commissioners and policy makers need to look at which ones show potential in terms of improving patient experiences.
      • Interagency partnerships
      • Linking with rideshare transportation services
      • Apps that provide real-time updates on transportation options
      Who is doing it better elsewhere?
      Policy makers, providers/commissioners of services need to consider what other healthcare services are doing to improve stakeholder experiences of transportation.
      • Learn and potentially adopt how other systems evaluate patient experiences of transportation
      • Identify which services have had the best user experience responses in other systems, why, and whether these findings are applicable to the in-center hemodialysis population
      Improve existing services
      Process map patients’ journeys. Make facility managers aware that patients struggle to access dialysis facility from the car park.
      • In multi-occupancy vehicles, group patients according to their zipcode
      • Allocate parking for patients close to the dialysis facility
      Regularly evaluate services
      Policymakers, providers and commissioners must solicit stakeholder feedback on transportation services on a regular basis.
      • Evaluate the efficiency and effectiveness of the service
      • Analyze the experiences of patients receiving hemodialysis services separately; although they represent a small proportion of all users, they are high users of mobility assisted transport
      Consider transportation as integral to accessing treatment and include in care bundle
      • Have the cost of travel to dialysis treatment paid for by the healthcare system
      Despite patient transportation to and from hemodialysis centers being repeatedly associated with poorer outcomes for patients in Canada and elsewhere, this topic has attracted relatively little ongoing interest from researchers or policy makers. Although one might expect that publicly funded transportation services would be regularly assessed for quality, no provincial or national standards exist to facilitate this objective. A change in policy is required to shift the responsibility for patient transportation from the patient to the medical system. A comprehensive assessment of transport options in each province is needed, which should include user experiences (Table S1). In addition to identifying problems, this exercise would provide a baseline from which future improvements can be measured. A collaboration of key stakeholders could develop minimum standards, key performance indicators and patient-reported experience measures to evaluate transport services on a regular basis.
      Our study had limitations. We did not use random sampling and some of the findings may not be relevant to low or middle income countries or those with a warmer climate. Its strengths include diverse participants, input from programs across the country and an in-depth qualitative approach that reflects stakeholder experiences.
      In summary, patients requiring transportation to access in-center hemodialysis treatment are unlike any other service users in healthcare. No other patient group is required to attend a facility 2-4 times a week for treatment, usually for the rest of their lives. This suggests that their healthcare needs, including transportation to treatment, cannot be met in the same way as other patients with short-term needs. Without a concerted approach to address the barriers identified in this study, it is likely that travel to and from dialysis will continue to adversely affect patients’ quality of life and willingness to continue treatment.

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      Acknowledgements

      The authors thank all participants for giving their time so freely and enthusiastically, particularly the volunteers, renal social workers, patients and their families. We also thank Garima Roy and Kelly Cook for their involvement in the study.

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