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A mult-centre observatonal study of how financial consideratons influence dialysis treatment decisions.

Funding/Support statement

This study was supported by a competitive research grant by Roche Product.

Acknowledgements

Participants and researchers who volunteered their time made this study possible.

Introducton

Clinical and social advantages of home dialysis for patients may include enhanced rehabilitation, return to work, flexibility in dialysis schedules, time and cost savings from reduced travel to dialysis centres, and better survival rates--all associated with improved quality of life (Pipkin et al., 2010; Agar et al., 2010; Lauder et al., 2010; Kerr et al. 2008). Despite these advantages, the use of home dialysis in Australia has declined, in keeping with a worldwide trend.

Literature review

Although some differences in the rate of uptake of home dialysis have been reported across various Australian states (Fortnum et al., 2016), overall, in 1990, 50% of dialysis patients in Australia were home dialysis patients. This number reduced to just 29% in 2010 (Fortnum et al., 2016; McDonald & Hurst, 2011). Those figures reflected a significant drop in peritoneal dialysis (PD) and consistent rates of the uptake of home haemodialysis (HHD), even though innovative and effective therapies such as nocturnal HHD have been made available during this time period might have been expected to lead to an increase in the total number of patients who take up home dialysis (Mehrotra et al., 2016).

Nursing staff have associated the decline of home dialysis with a growth of satellite dialysis units (Agar et al., 2010). Other possible reasons for the low uptake of home dialysis include increasing age and co-morbidity of the dialysis population (MacGregor et al., 2006); home dialysis may be recommended if specific barriers to patient uptake are addressed (Lauder et al., 2010). Barriers to home dialysis reported by patients include fear, low motivation, lack of self-care ability, lack of family support, lack of respite care, and lack of financial support (Agar et al., 2010; Lauder et al., 2010; Ludlow et al., 2011; Sinclair, 2008; Briggs et al., 2011). Increased utility costs have previously been linked to the low uptake of home dialysis (Cass et al., 2010). In Australia, state governments and some utility providers offer limited and variable financial support for home dialysis patients (Lauder et al., 2010). Fact sheets produced by the HOME Network (Chow et al., 2013) and Kidney Health Australia show that concessions and rebates are only available to patients who fulfil eligibility criteria. Both benefits and criteria vary by supplier and state government. Recent reports by Kidney Health Australia (Fortnum & Grennan, 2015) identify that half of dialysis patients are affected financially, but interestingly, found no variance between those on home dialysis and centre-based dialysis.

Whilst financial cost of dialysis is recognised as a barrier to home dialysis, the extent to which cost is a deciding factor in therapy choice has not been fully explored. In fact, actual costs incurred by patients on home dialysis have not been fully described.

Objectives

An observational study was designed to understand what costs are incurred by Australian participants on home dialysis and, if so, whether those costs serve as a barrier to home dialysis amongst Australian patients.

Method

The multicentre, observational descriptive cohort study using quantitative data collection and analysis had been described in detail previously (Chow et al., 2016). A purpose-designed survey (available in English, Chinese and Arabic) that included 23 quantitative items, was developed to provide: a description of participants, their dialysis method (history and preferences), costs incurred and their accounts of facilitators and barriers to home dialysis. Expenses incurred in the 12 months prior: cost of consumables (ongoing costs); items purchased (that is to say, not an ongoing expense); and their estimated costs were all asked for in the survey.

The surveys included both multiple-choice answers and open-ended answers. Surveys were completed by participants, who were de-identified by the researchers at each site, then these replies were collated and analysed.

Subjects

Participants (home dialysis and satellite unit dialysis patients) were recruited to complete the survey from fives sites (urban, regional or rural) (Figure 1) over an 18-month period, starting in January 2015. In this study, home dialysis referred to continuous ambulatory peritoneal dialysis (CAPD), automated peritoneal dialysis (APD) and HHD. Researchers at each site sought to recruit survey respondents who were dialysis patients and met the following criteria:

* Over 18 years of age.

* Preferred language: English, Chinese or Arabic (surveys were available in all three languages).

* Clinical records that did not indicate any intellectual or mental health concerns.

Data analysis

All 23 quantifiable survey items were entered into an Excel spreadsheet verbatim from survey forms. Quantitative responses were sorted, counted, ranked and, where appropriate, summary statistics were applied to describe participants, the items purchased, incentives participants believe would encourage home dialysis uptake, reported reasons for choosing dialysis methods, participants' identified barriers and facilitators to home dialysis. Where appropriate, responses were summed, ranked or averaged.

Ethics

This study was approved by local research governance bodies at each participating site. Researchers at each site invited their dialysis patients in their care to complete the survey. All those who provided consent completed the survey.

Results

One hundred and thirty eight survey responses (n=138) were collected from across the five sites. Table 1 provides a summary of the description of participants, which is summarised as follows:

Ninety per cent of the participants were over the age of 40 years (18-75 years). The majority (55%) were retired or dependent on a pension and a further 15% described themselves as unemployed. Eighteen per cent were employed, approximately half of those on a part-time basis.

The number of male participants (95) was just more than double that of female participants (43). The majority of all participants (61%) were married or in de facto relationships, with fewer (31%) being single at the time of completing the survey. The remainder (8%) of participants did not indicate their marital status. In keeping with this, 73% of participants reported living with family or friends, and 22% reported living alone, approximately half of whom had carers visits.

Seventy-three per cent of all participants were born in either Australia or New Zealand, a further 16% were born in Europe or the UK, with less than 5% born in Asia and the rest of the world. Consistent with this demographic was the finding that more than 90% of all participants chose English as their preferred language.

The majority of participants (63%) reported income well below the average Australian monthly income for full-time employees of A$6,000 (ABS, 2016). Sixty-eight per cent of participants reported that they qualified for an Australian concession card (consistent with reported low income). Ninety per cent of participants either drove or relied on someone else to drive them as their means of transport, with just 10% relying on public transport.

The average length of time on dialysis of survey respondents was 3.8 years (1 month to 15 years). Eighty per cent of participants were home dialysis patients at the time of completing the survey for this study (Graph 1). However, many of these participants had experience of both home and satellite dialysis.

Costs associated with home dialysis

Sixty-two per cent of home dialysis participants (69 participants) reported incurring expenses related to home dialysis in the past 12 months, which was fewer than expected, given that home dialysis has been previously associated with out-of-pocket expenses, as discussed in the introduction. Those 69 home dialysis participants who reported expenses, reported an average annual spend on consumables related to home dialysis of A$116 each (minimum $10, maximum $250). In addition, they reported spending approximately A$1,000 on utilities in relation to home dialysis (water, electricity and telephone in a 12-month period) and a further A$900 on pharmacy and pathology specific to their home dialysis. No comparison is possible with hospital or satellite dialysis patients as their expenses are covered by state hospital funding. Those home dialysis participants living in remote areas reported spending an equal amount (average A$1,600) on travel to appointments and check-ups. For the majority of respondents, these costs are borne by them as "out of pocket" expenses, with fewer than 20% of survey respondents receiving financial assistance in the form of money from their state health service (only the Australian State of Victoria pays money, on average A$1,120 per annum) to patients who opt for home dialysis.

Health services in all Australian states and territories do, however, usually pay for one-off expenses to prepare for home dialysis, which are usually related to home renovations. Participants reported that the preparation for home dialysis did involve spending money, which was reported on average to be A$2,030 (minimum $120, maximum $10,280).

Graph 2 lists the items that survey respondents reported they purchased as one-off fixed costs before starting home dialysis. Ninety-two items were ranked from most frequently reported to least frequently reported. Renovations were the most commonly reported purchase, followed by comfortable seating and storage. The remaining list included items that were reported by seven or fewer respondents.

Incentives, facilitators and barriers to home dialysis

Given that some respondents did report out-of-pocket expenses, and most will have to pay for these out of low to medium incomes, the question remains whether costs are a disincentive to home dialysis for these survey respondents. Table 2 lists the incentives (what might entice a patient to take up home dialysis) reported by the respondents to be what they consider would encourage the uptake of home dialysis. One hundred and sixty-one incentives were listed by participants. Just 14% (23) of the total number of incentives reported by participants referred to financial support. Access to medical or nursing support and assistance with maintenance and assistance, information, and training in convenient locations were all mentioned a similar number of times to monetary support, making monetary support just one of the variables considered by these participants to be an incentive to home dialysis.

Table 3 presents 198 reasons survey respondents reported for choosing home dialysis. Cost was perceived as a barrier by a small number of home dialysis patients surveyed. Table 4 presents 32 reasons respondents on satellite dialysis report for choosing satellite dialysis. Cost (or fear of costs on home dialysis) was not mentioned among the reasons for choosing satellite dialysis.

The facilitators (differentiated from an incentive, in that a facilitator was what is needed to make home dialysis operational, whereas an incentive, shown in Table 2, was a reward for choosing that form of dialysis) and barriers (obstacles) to home dialysis reported by this group of participants are shown in Table 6. Cost was mentioned by some participants to be a barrier to home dialysis, but ranks lower (mentioned by just six participants) than some of the other items. Medical condition was the most common reason for hospital dialysis, along with fear and isolation. Medical conditions reported were chronic shoulder pain related to PD, fluid overload, needle phobia and infection. Of interest was that for many participants in this study, they perceived no barriers to home dialysis (Table 6).

Discussion

Most respondents (114) were home dialysis patients and most were happy with their treatment option. Not surprisingly, this group reported more facilitators (201) than barriers (114) to home dialysis. The most commonly reported facilitators to taking up home dialysis included flexibility, nursing support, no travel required, lifestyle, convenience, training, social support, deliveries and work. The most commonly reported barriers to taking up home dialysis included time, family, lack of technical support in the home, lack of space at home, and storage limitations.

Cost on its own was not mentioned as a barrier to home dialysis by most survey respondents. Set-up costs were mostly covered by hospital services for these participants. Ongoing costs were estimated to be on average A$2,300 per annum. Ongoing costs might be a barrier for some. Yet, these participants incurred costs that they were willing to absorb, even though their average income was considered low by Australian standards. For this group, at least, the costs that were incurred from home dialysis would not force them to take on hospital dialysis. Rather, factors such as support and medical advice were more commonly reported as guiding their decisions.

It may be argued that these patients were mostly home dialysis patients and so they were ones who had not allowed cost to impact on their decision. However, a number of these home dialysis patients also had experience in the hospital/satellite dialysis in their dialysis journey. Although fewer in number, the satellite dialysis patients who participated in this study also did not report cost as a factor in making their decision, leading to the conclusion that cost cannot be simply assumed as the reason that numbers of home dialysis patients are declining. Extending this survey to greater numbers of satellite dialysis patients and to home dialysis patients in other settings might allow for further statistical analysis, which would add to the description offered here.

As presented in the introduction, cost is reported as a factor affecting the low uptake of home dialysis (Lauder et al., 2010). This study did not reveal what information about cost is shared when health care practitioners discuss dialysis treatment options. However, recognising cost as one of several barriers to home dialysis should assist in guiding discussions with patients about treatment options. Investigating what information is shared in real-life patient--professional encounters would reveal whether cost is mentioned by practitioners or patients before decisions are made, and if cost is more of an influence at the time of decision making.

Cost can be a complex matter in relation to other concerns such as work, housing, rebates and age (Rodriguez & Young, 2006; Wang et al., 2013). For that reason, qualitative analysis of survey responses in addition to interviews of a select group of participants is recommended.

Although the findings from this study may not be generalisable to dialysis patients who receive services in very different contexts, nonetheless, this Australian multi-site data set provided answers to the question of what costs are incurred by Australian dialysis patients and whether those costs were determiners of treatment choice. The results of this descriptive study show that for this group of respondents, at least, cost was not a major influence on dialysis method. The results also provided a quantified amount that Australian dialysis patients pay towards their ongoing costs.

This study has explored the role of cost in decision making related to home versus hospital dialysis. Those advising and supporting dialysis patients need to be aware of that support, training and the presence of a carer were collectively all more prominent in the issues raised by these participants than cost was. This finding provides guidance to clinicians in preparing patients for home dialysis.

Conclusion

The quantitative analysis of results shown in this paper indicates that cost was listed as a perceived barrier by a small number of home dialysis patients surveyed. Cost of home dialysis does not determine treatment decisions for these Australian dialysis patients. The participants varied in income levels, but on average, incomes were low by Australian standards. In spite of low income, these participants reported being happy with home dialysis, and although some had considered changing methods, reasons for change tended to be medical.

Although the results may not be generalisable to other populations of dialysis patients, the findings here nonetheless suggest that contrary to previously published studies, cost could not be singled out as a major factor and so is unlikely to be the reason for declining numbers of home dialysis patients, at least in Australia. This description of quantitative survey data highlights the importance of social support and the influence of medical advice to decisions about home dialysis. Results reported here can nonetheless inform policy and practice by differentiating between the start-up costs paid for by health services and the cost of consumables paid for by patients. The fact that cost, in the present system in Australia, has not been a major impact provides evidence of the need for health services to continue to provide the support that they do, as well as to consider additional forms of support in the way of payouts, as patients incur costs, even if those costs are not barriers to the uptake of home dialysis.

References

Agar, J., Hawley, C., George, C., Mathew, T., McDonald, S., & Kerr P. (2010). Home haemodialysis in Australia--is the wheel turning full circle. Medical Journal of Australia, 192(7), 403-406.

Australian Bureau of Statistics (ABS). (2016). 6302.0--Average Weekly Earnings, Australia. Canberra: ABS.

Briggs, N., Hurst, K., & McDonald. S. (2011). Method and Location of Dialysis. In: McDonald, S. & Hurst, K. (eds). The 34th ANZDATA report--data to 2010. Adelaide: Australia and New Zealand Dialysis and Transport Registry.

Cass, A., Chadban, S., Gallagher, M., Howard, K., Jones, A., McDonald, S. et al. (2010). The Economic Impact of End-Stage Kidney Disease in Australia--Projections to 2020. Sydney: Kidney Health Australia.

Chow, J., Collingridge, L., Equinox, K., Frasca, S., Simmonds, R., & Tomlins, M. (2016). Identifying Factors Associated with Uptake of Home Dialysis: Observational Study Methodology. Renal Society of Australasia Journal, 12(3), 93-98.

Chow, J., Fortnum, D., Moodie, J., Simmonds, R. and Tomlins. M. (2013). The HOME network: an Australian national initiative for home therapies. Journal of Renal Care 39 (Suppl 1): 56-61.

Fortnum, D., & Grennan, K. (2015) My Kidneys My Choice Decision Aid. Consumer Health and Professional Evaluation. www.homedialysis.org.au. Accessed 24 July 2016.

Fortnum, D., Mathew, T., & Johnson, K. (2012) A Model for Home Dialysis. http://kidney.org.au/cms_uploads/docs/a-model-for-home-dialysis-2012-kha-web.pdf. Accessed 20 July 2016.

Kerr, P. , Polkinghorne, K., & McDonald, S. (2008). Home hemodialysis in Australia: current perspective. Hemodialysis International, 12(s1), S6-S10.

Lauder, L., Ludlow, M., Hawley, C., Richardson, E., Mathew, T., & Munro, C. (2010). Australian nephrology nurses views on home dialysis: a national survey. Renal Society of Australasia Journal, 7(1), 6-12.

Ludlow, M., George, C., Hawley, C., Mathew, T. , Agar, J., Kerr, P. et al. (2011). How Australian nephrologists view home dialysis: Results of a national survey. Nephrology, 16(4), 446-452.

MacGregor, M., Agar, J., & Blagg, C. (2006). Home haemodialysis--international trends and variation. Nephrology Dialysis and Transplantation, 3(1), 21-24.

McDonald, S., & Hurst, K. (eds). (2011). 34th Annual Report--Australia & New Zealand Dialysis and Transplant Registry. Adelaide: Australia New Zealand Dialysis and Transport Registry.

Mehrotra, R., Devuyst, O., Davies, S., & Johnson, D. (2016) The Current State of Peritoneal Dialysis. Journal of the American Society of Nephrology, 27(11), 3238-3252.

Pipkin, M., Eggers, P. , Larive, B., Rocco, M., Stokes, J. Suri, R. et al. (2010). Recruitment and training for home hemodialysis: experience and lessons from the Nocturnal Dialysis Trial. Journal of the American Society of Nephrology, 5(9), 1614-1620.

Rodriguez, K., & Young, A. (2006). Patients' and healthcare providers' understandings of life-sustaining treatment: Are perceptions of goals shared or divergent? Social Science & Medicine, 62(1), 125-133.

Sinclair, P. (2008). Home haemodialysis: a literature review. Renal Society of Australasia Journal, 5(1), 9-15.

Wang, V., Maciejewski, M., Patel, U., Stechuchak, K., Hynes, D., & Weinberger, M. (2013) Comparison of outcomes for veterans receiving dialysis care from VA and non-VA providers. BMC Health Services Research, 13(1), 26-29.

Josephine Sau Fan Chow (1,6,7) josephine.chow@sswahs.nsw.gov.au

Keri-Lu Equinox (2) Keri-Lu.Equinox@health.qld.gov.au

Serena Frasca (3) serena.frasca@health.sa.gov.au

Rosemary Simmonds (4) roses@barwonhealth.org.au

Melinda Tomlins (5) melinda.tomlins@hnehealth.nsw.gov.au

Louise Collingridge (8) louise.collingridge@bigpond.com

(1) South Western Sydney Local Health District, Sydney, NSW, Australia

(2) Cairns Base Hospital, Cairns, QLD, Australia

(3) Home Therapies Unit, Central Northern Adelaide Renal Transplant Services, Adelaide, SA, Australia

(4) Barwon Health Home Therapies Unit, Barwon, VIC, Australia

(5) Nephrology Department, John Hunter Hospital, Newcastle, NSW, Australia

(6) University of Sydney, Sydney, NSW, Australia

(7) University of Tasmania, TAS, Australia

(8) Honorary Associate, Department of Linguistics, Macquarie University, Sydney, NSW, Australia

Address of the institutions at which the work was carried out:

Site 1: Renal Unit, Liverpool Hospital, Elizabeth Drive, Liverpool NSW 2170

Site 2: Wansey Dialysis Centre, John Hunter Hospital, 1A Dudley Road, Charlestown NSW 2290

Site 3: Renal Services, Cairns Base Hospital, PO Box 902 Cairns QLD 4870

Site 4: Home Therapies Unit, Central Northern Adelaide Renal Transplant Services, The Royal Adelaide Hospital, North Terrace, South Australia, 5000

Site 5: Home Therapies, Barwon Health, PO Box 281, Geelong 3220

Correspondence to: Professor Josephine Sau Fan Chow, Clinical Innovation & Business Unit, Locked Bag 7103, BC1871, Liverpool, NSW 2170, Australia

Email: josephine.chow@sswahs.nsw.gov.au

Submitted: 13 May 2017, Accepted: 17 July 2017
Table 1: Description of participants (n=138). The number of
participants falling into each category is shown.

Age                       Living arrangements

<20 years             1   Live with family     95
20-30 years           2   Live alone--no       18
30-40 years          11   carer
40-50 years          25   Lives alone with
50-60 years          22   occasional carer      7
60-70 years          36   visits
>70 years            41   Live alone with       5
                          carer visits
Gender                    Live with friends     5
                          Not marked            8
Male                 95
Female               43   Employment status

Marital Status            Retired/aged         74
                          pension
De facto or          85   Unemployed           20
married                   Employed full-time   13
Divorced,
separated or         18   Employed part-time   12
widowed
Single               26   Disability pension    2
Other or not          9   Not marked           17
marked
                          Concession card holders (recipients
Country of birth          of government financial assistance

Australia/New       102   Yes                  94
Zealand                   No                   36
UK/Europe            23   Not Marked            8
Africa/America        2
South East Asia       5   Monthly income
Pacific Islands       3
Other or not          3       $0                1
marked                      $600               10
                          $1,200               36
Preferred language        $2,400               40
                          $4,000               27
Australian English  126   $8,000                5
European              3   Not marked           19
Languages
Asian Languages       3
Not marked            6

Table 2: Incentives participants consider would encourage the uptake of
home dialysis--161 responses received

ITEMS                                      Number of
                                           Responses

Access to medical/nursing support             26
Assistance with maintaining home dialysis     25
Carer/nursing support                         23
Monetary                                      23
More information first                        22
Closer training facilities                    19
Not sure/don't know                           18
Health benefits                                3
Medical decision                               2

Table 3: Reasons participants chose home dialysis (198 reasons
collected).

Items                                          Number of
                                               Responses

Freedom                                           28
Convenience                                       23
Flexibility                                       23
Less travel                                       22
Allows for work                                   17
Better health outcomes                            10
Comfort/Time                                       7
Allows for travel/control/health benefits/         5
independence/longer and slower dialysis/
Support
Allows for family life/medical advice              4
Less cost associated with home                     3
dialysis/allows for social life/no hospital
places available
Allows for time with family/privacy                2
Allows for childcare/home live/easier at           1
home/support from spouse/less impact on
life than hospital/home dialysis is hard work
and time consuming/less restrictive diet/
lifestyle/manages in spite of needle phobia/
spiritual healing at home

Table 4: Reasons participants choose hospital dialysis (32 reasons
collected).

Items                                         Number of
                                              Responses

Medical reasons                                  11
Comfortable in hospital with care and
support/Home dialysis too invasive (impact
on family life)/Home not suitable for home        3
dialysis (renting) so changed back to in-
hospital--hopes to return to home dialysis/
Hospital preferred as no carer at home
Hospital offers social benefits                   2
Advanced age as a barrier to home dialysis
--aware may need to revert back to
hospital in future years/Changed back to
hospital because of health risks/Hospital
because lives alone/Hospital because new          1
to dialysis (not yet trained)/Hospital means
dialysis does not dominate home life/Less
time-consuming in hospital/Needle phobia
so prefer hospital

Table 5: Facilitators to the uptake of home dialysis (210 facilitators
reported) in order from most commonly to least commonly reported. The
right-hand column indicates the number of times that item was reported
by the survey respondents.

Items                                           Number of
                                                Responses

Support (medical, nursing, technical, family)      33
Less travel                                        28
Flexibility                                        24
Time                                               18
Convenience                                        12
Allows for work/supplies provided/training         11
Freedom                                             9
Allows for time with family/control                 8
Better health outcomes                              5
Allows for travel/comfort/independence/less
costs on home dialysis (i.e. no out of              4
pocket expenses)
Allows for social life/home suited to dialysis      3
(home ownership)
Carer support/privacy                               2
Allows for normal life/assistance with
preparation of home/diet/knowledge/                 1
normality/not invasive

Table 6: Barriers to the uptake of home dialysis (123 barriers
reported). The right-hand column indicates the number of times that
item was reported by the survey respondents.

Items                                          Number of
                                               Responses

Constant dialysis (time and presence of
equipment) at home                                 9
Lack of support                                    9
Fear/needle phobia/home constraints/time
consuming                                          8
Aloneness/isolation/maintenance of
equipment/confidence in abilities/problem
solving                                            7
Costs for utilities/storage/supplies               6
Burden on family/information required              5
Power--risk of outage/support by phone/
unfamiliar staff                                   4
Lack of discipline/following procedures/less
ability to travel/waste disposal                   3
Dealing with technical problems/confidence/
deliveries/not able to travel/training             2
Dependence on time at home/dialysis
in front of family/dialysis is a constant
presence/dietary restrictions/difficulty
sleeping/difficulty with children at home/
disrupts family life/exhaustion when working/
language/less sleep/noise/medical risk to
home dialysis/stress                               1
No barriers                                       21
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Author:Chow, Josephine Sau Fan; Equinox, Keri-Lu; Frasca, Serena; Simmonds, Rosemary; Tomlins, Melinda; Col
Publication:Renal Society of Australasia Journal
Date:Nov 1, 2017
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