TCRP Project B-45

Transportation to Dialysis Facilities:

Health/Transportation Policy Intersection

Presentation at FTA State Programs Meeting and

State Public Transit Partnerships Conference

August 16, 2017

KFH Group, Inc.In Association with:

Marsha Regenstein, PhD, Dept. of Health Policy at George Washington University

Dr. Tariq Shafi, Department of Medicine at Johns Hopkins University

TCRP B-45

Background to Research Project

• There are 678,000+ people in the United States with end-stage renal disease (ESRD), and almost 121,000 new cases each year.

• End-Stage Renal Disease is the last stage of chronic kidney disease when the kidneys fail. With kidney failure, kidneys no longer work well enough for a person to survive without dialysis or a kidney transplant.

• Only treatment options – kidney transplant or dialysis. Kidney transplantation is considered a preferred choice for many, but there is a shortage of organs available for donation. 70% patients with ESRD are treated with dialysis.

• Dialysis: a process that performs the kidneys’ function, filtering blood and removing waste, salt and extra water and helping to control blood pressure.

• Patients on dialysis: 88% are treated in facilities and 12% use home dialysis.

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TCRP B-45

Increasing Prevalence of ESRD

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TCRP B-45

Transportation to Dialysis

• Trips for dialysis are life-sustaining; many patients rely on publicly subsidized transportation, including public transit agencies, to get to and from their dialysis facility.

• Demand for dialysis trips is increasing with the increasing prevalence of ESRD.

Dialysis Location and Treatment

Transportation Needs

One-Way TripsPer Month

AnnualizedOne-Way

Trips

Dialysis Facility - Hemodialysis 24: Assumes six trips/week and 52 weeks/year 312

Patient’s Home – Peritoneal Dialysis or Hemodialysis

During training period –40: Two trips each weekday for 4 weeks of training.After training period -4-6 trips each month for periodic appointments at dialysis facility or with nephrologist.

84-112

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TCRP B-45

B-45 Research Objectives

• Key audiences for this research project are communities facing increasing demand for transportation to dialysis treatments, including patients/advocates, public transportation agencies, dialysis centers, and medical practitioners.

• Objectives of the project, as set out in the RFP include:

(1) To quantify the current and projected demand and costs associated with transportation for kidney dialysis in the United States.

(2) To identify current and effective practices and new strategies for funding and providing transportation to dialysis treatments.

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Our Approach to the Research Project

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TCRP B-45

Transit Agency Survey

Survey Instrument and Administration

• Developed questions, reviewed by our consulting experts and the Panel, formatted for SurveyMonkey

• Distributed widely, using listings from APTA and NTD; also sent to State program managers at state DOTs using listings through AASHTO and SCOPT, asking that they forward the survey to their subrecipients

Results

• 541 responses, 534 of which were usable

• 6% are in large metropolitan areas (over 1 million population),

• 10% are in large cities (200,000 to 1 million population),

• 23% are in smaller cities (50,000 to 200,000 population), and

• Remaining 61% are in rural areas or smaller communities (less than 50,000 population).

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TCRP B-45

Type of Specialized Transportation/Paratransit Provided

Response Options Total

ADA paratransit 49%

Demand response transportation for seniors and people with disabilities 69%

Demand response transportation for general public 59%

Medicaid non-emergency transportation (NEMT) 37%

Service provided on contract basis to one or more human service agencies 30%

Other 13%

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TCRP B-45

Trips to Dialysis Facilities

Approximately what percent do the dialysis trips represent of all your specialized transportation/paratransit services?

Response OptionsLarge Metro

AreaLarge City

Smaller City

Rural/ Small Community

Total

Less than 10 Percent56% 43% 47% 67% 60%

10-20 Percent 22% 29% 26% 17% 20%

21-30 Percent 11% 12% 10% 6% 8%

31-40 Percent 4% 5% 6% 1% 3%

41-50 Percent - - 5% 3% 3%

More than 50 Percent4% - 3% 1% 2%

Not Sure 4% 12% 5% 4% 5%

Respondent Count 27 42 105 289 463

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TCRP B-45

Impact of Dialysis Trip Demand

How has the demand for dialysis trips impacted your ability to provide service for other trip purposes?

Response Options Total

It has not impacted our ability to serve other trip purposes; we are generally able to serve all our trip demand including dialysis trips.

55%

We meet all trip demand because our service is ADA paratransit, however demand for dialysis trips is requiring additional service and additional costs.

15%

35%

During an average day, it is difficult to serve other trip purposes because dialysis trips are using so much capacity.

10%

During peak times for dialysis trips, it is not possible to serve other trip purposes because demand for dialysis trips uses the capacity.

9%

Given the demand for dialysis trips, we now limit trip purposes to specifically-defined essential trips only (e.g., medical including dialysis, work, school, etc.) and no longer serve trips for non-essential purposes.

1%

Other 26%

Respondent Count 468

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TCRP B-45

Strategies/Practices for More Effective Dialysis Transportation

Response Options Totals

Educate dialysis facility staff regarding what we can and cannot do as a transit agency

65%

Educate our dialysis passengers regarding what we can and cannot do to serve their dialysis trips

65%

Increase training for dispatch/scheduling staff and drivers as to dialysis passengers’ needs

43%

Provide more flexibility for return trips from dialysis, e.g., allow extra time to wait for passengers

56%

Provide more leeway for dialysis passengers regarding no-shows/late cancels 43%

Work with dialysis facilities to coordinate patients’ treatment times, allowing for grouping of trips for more productive service

67%

Work with dialysis facilities or the dialysis passengers so the passengers receive treatment at a dialysis facility closest to their home

31%

Other (please describe). We would very much like to know what you are doing that works!

26%

Respondent Count 274

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TCRP B-45

Comments from Transit Agencies

• Scheduling problems for the return trips from dialysis.

“The problem we encounter most frequently is that a rider is late getting off dialysis and we have to leave to do other scheduled trips. The rider is then left waiting until the driver is able to go back. I know this is hard on the rider as they are weak or ill and have to spend additional time waiting on a ride.”

• Extra care and support needed by dialysis patients, particularly after treatment.

“The special assistance needs of these passengers go beyond what a public transit driver can provide.”

• Costs for dialysis trips: additional efforts required; lowered productivity (longer wait times, extra passenger assistance, limited grouping of passengers due to their passengers’ different treatment times and dispersed trip origins, and long travel times to reach dialysis facilities).

“At $64.40 a trip, it costs us approximately $20,000 annually to transport a single dialysis patient to and from treatment three days each week. We recoup about $1,000 in fare revenues for those trips, which are capped at twice the equivalent fixed route fare for the same trip. THIS IS NOT SUSTAINABLE!”

• Changing treatment days/times for patients, which causes scheduling issues.

“Dialysis transportation is high maintenance. We have to work closely with dialysis facilities because their patients' schedules are constantly changing.”

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TCRP B-45

Dialysis Facility Survey

Survey Instrument and Administration• Developed questions, reviewed by our consulting experts and the Panel,

formatted for SurveyMonkey

• Distributed to dialysis facility social workers, with assistance of Council of Nephrology Social Workers, affiliated with the National Kidney Foundation

Results• 262 responses

• Responding facilities located in 39 states plus U.S. Territory of American Samoa

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Transportation Mode to Dialysis Facility

How Do Your Patients

Travel To/From

Your Dialysis Facility?

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Transportation to Dialysis

Please estimate the percent of your patients who routinely have difficulties with transportation to/from your dialysis facility.

Percent of PatientsResponsePercent

Less than 10% 19.4%

10-20% 25.8%

21-30% 19.4%

54%31-40% 11.5%

41-50% 8.3%

More than 50% 14.3%

Not sure 1.4%

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TCRP B-45

Public Transportation to Dialysis

For patients who rely on public transportation buses or paratransit vans, do transportation issues impact patients’ dialysis treatment?

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TCRP B-45

Public Transportation to Dialysis

If yes -- public transportation issues impact patients’ treatment -- survey asked two follow-up questions:

(1) Do public transportation issues result in

shortened patient treatments because

they arrive late or leave early?

(2) Do patients miss treatments

because public transportation is not reliable?

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Comments from Social Workers

• Social workers spend a lot of time dealing with patient transportation.

“It is not uncommon that we spend hours a week dealing with transportation problems, which sometimes seems that our position is more transportation manager than social worker with a Master’s degree.”

• Medicaid transportation is not reliable.

“Medicaid transportation is the most problematic. Quality has declined significantly since the state …implemented a [private] transportation broker. Transportation providers change constantly…often do not show up or are quite late, both of which decrease patients’ treatment, thereby negatively affecting their health.”

• Public paratransit service has problems: days and hours of service are limited; service area is limited; dialysis trips cannot be prioritized.

“ADA paratransit services have not been able to prioritize our medically necessary trips that are life sustaining.”

• Patients have long waits for their trip home.

“Some transportation services have patients waiting a very long time after treatment to be picked up. Patients who wait long periods of time after treatment seem to have frequent physical declines.”

• Limited transportation in rural areas if patients do not have their own transportation.

“In a rural area like ours, transportation resources are so limited. The transportation that is available cannot transport patients at typical dialysis times causing patients to have to get off treatment early or start treatment late.”

• Transportation is a big concern and stress for patients.

““Transportation problems have a huge impact on our patients. They often report this to be the number one stressor in coping with ESRD.”

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