Response to Public Comments

Attachment F:
Response to Public Comments

CMS Response to Public Comments Received for CMS-10105

The Centers for Medicare and Medicaid Services (CMS) received comments from two national organizations and a healthcare organization related to CMS-10105 (OMB control number 0938-0926), National Implementation of the In-Center Hemodialysis CAHPS Survey. Below we present the comments and responses to the questions.

1. To reduce the burden on patients, which we believe will improve the survey response rate and result in a net improvement in data collection, the NKCA urges CMS to reduce the number of times a patient is surveyed to once per year. Because we suspect that there is a heterogeneous response across our patient population to the burden of the ICH CAHPS Survey, we are concerned that the decline in the response rate may be disproportionately distributed.

Response: CMS is evaluating the data from the three completed survey periods and assessing whether the ICH CAHPS Survey could be offered on an annual versus semiannual basis. We are currently offering it semiannually, because we believe that the population changes over the course of a year due to a high mortality rate and two survey collections are necessary to capture a representative patient population. After one year of treatment, patients on dialysis have a 20 to 25% mortality rate, depending upon the mode of their treatment (The Kidney Project, Department of Bioengineering and Therapeutic Sciences, 2013, https://pharm.ucsf.edu/kidney/need/statistics. Accessed 3 Feb 2017). If we were to move to an annual survey, we would risk missing the experiences of many newer patients.

2. Fewer questions and shorter answers. CMS should reduce the number of questions and the number of possible answers. For example, the virtue of understanding a patient’s ability to climb stairs and their ability to dress/bathe is likely limited, as both questions relate to physical mobility. Evidence from a leading survey purveyor suggests that surveys with fewer questions encourage respondents to answer more thoughtfully.

Response: CMS is reviewing the data from the three completed survey periods and assessing whether questions from the survey can be eliminated due to low variability (e.g. most patients provide the same response) or low response rate (e.g. most patients skip this question). We are in the planning phase of conducting focus groups to test questions and shortening of existing questions will be in consideration when reassessing the survey. We will be able to update OMB either later this year or the beginning of next year, depending on budget and scheduling considerations.

3. Allow administration of ICH CAHPS survey in three component domains rather than in its entirety to each beneficiary

Response: Offering the survey in three component domains rather than in its entirety as proposed requires a larger patient population. This would increase the burden on all facilities and would prevent several of the facilities with smaller patient populations from meeting the requirements to administer the survey. The facilities would need a larger number of surveys completed in order to have reportable data, possibly excluding facilities from inclusion in public reporting of data and qualifying for quality based performance incentives.

4. Web-based survey. NKCA urges CMS to pursue the development of lower-cost (and lower-burden) web-based surveys. A web-based survey could be both more efficient and implemented in a manner that would yield timelier responses, potentially even is on a rolling basis. Timeliness would be extremely useful to facilities who currently receive one ICH CAHPS report just as the next survey is being administered.

Response: CMS is evaluating whether web-based surveys would be a viable option in a Medicare population using various CAHPS surveys on an ongoing basis. If CMS determines that CAHPS surveys could be administered successfully over the web, we will look to expand it to ICH CAHPS. As we expect access to and familiarity with the internet change over time, we also will revisit decisions to offer web-based surveys periodically. We do note, however, that kidney disease disproportionately impacts minority groups and low income individuals (The National Kidney Foundation, Minorities and Kidney Disease, 2015, https://www.kidney.org/news/newsroom/nr/Low-Income-Linked-to-Higher-Levels-of-Kidney-Disease. Accessed 7 Feb 2017), who may have more limited internet access. We do not want to take any actions that would make it more difficult to participate in the survey.

5. Potential Value from a Home Dialysis CAHPS Survey. NKCA also urges CMS to consider the development of a home dialysis CAHPS Survey. NKCA members are committed to encouraging patients to consider home dialysis and believe that a patient satisfaction survey, if well-constructed and not overly burdensome, could yield valuable insights for providers as well as the opportunity to track trends over time.

Response: Home Dialysis is a different type of care and assessing that experience separately makes sense. CMS is exploring the feasibility of development and administration of a Home Dialysis CAHPS Survey; however, at this time an instrument for this population does not exist.

6. We are surprised that gender is not a demographic question included in the survey. Its usefulness should be self-evident.

Response: We do not ask gender on the survey because we obtain it from other CMS data sources.

7. Eligibility requirements: …we note that some dialysis patients may be unable to be surveyed either because of poor cognitive function or homelessness. In addition to current eligibility criteria – 18 years of age or older and three months or more of treatment at the current facility – we urge CMS to include cognitive function and suitable residence to be criteria for eligibility.

Response: The ICH CAHPS Survey is currently administered to the homeless population, if they can be contacted. Participants in the ICH CAHPS Technical Expert Panel that met December 13, 2012 believed that some homeless persons do have cell phones and might be able to respond to a telephone survey (for information about homeless people and cell phones, please see Woolley, Emma. How can homeless people afford cell phones?, 2014, http://homelesshub.ca/blog/how-can-homeless-people-afford-cell-phones. Accessed 6 Feb 2017). Other homeless persons, while they do not have a home address, do have an address where they can be reached. We ask vendors to make every effort to find contact information for homeless respondents. The homeless hemodialysis patient is clearly highly vulnerable and their experiences will enrich the survey data to the extent that we can include them. The survey is voluntary, so a potential respondent is not required to respond regardless of the reason, including poor cognitive function. We have found that most members of our sample are cognitively capable of responding to the questionnaire.

8. Facilitate verification and accuracy of beneficiary current contact information for survey administrators. We urge CMS to establish a process and require third-party vendors who administer the survey to use it to ensure that beneficiary contact information is as accurate and up-to-date as possible. As we understand the process, CMS will identify beneficiaries who will complete the survey and a third-party vendor will administer the survey. Such a scenario is likely related to the time lag in drawing the sample, providing the information to vendors, and administering the survey. It is simply inappropriate to hold facilities accountable for low responses given that CMS’s contact information may be out of date or inaccurate. Therefore, we ask that CMS provide an opportunity for facilities to ensure that the primary survey and/or any follow-up is delivered to the most current contact (phone or mail) given the penalty that applies for nonresponsiveness.

Response: CMS is aware of the potential that respondent contact information is outdated. In our Administration and Specifications Manual for their ICH CAHPS Survey, we ask that ICH CAHPS vendors verify and update vendors using third-party databases (see https://ichcahps.org). We also allow the vendors to ask facilities for updated patient contact information, as long as all of the patients at the facility are included in the request. This is done so as not to alert the facility as to who is in the sample.

Although we prefer a high response rate, facilities are not penalized for low response rates to the ICH CAHPS Survey.

9. Independently verify lingual translations for cultural competence. KCC have observed instances where the survey’s lingual translations contain significant errors. One example of this is in the Chinese version of the survey. Therefore, we strongly encourage CMS to validate its translations of the ICH CAHPS survey to ensure that they are accurate.

Response: We are currently reviewing our translations, including the Chinese translations, and will make changes as needed. Chinese translations create challenges due to the multiple dialects.

10. Ensure aggregate date is available for evaluation. We wish to clarify that even though the specifications indicate that survey responses will not be shared with individual facilities, the aggregate responses should be provided. While we understand why individual survey results should be confidential, if the aggregate data are not shared, then survey is for naught.

Response: CMS plans to offer downloadable databases of ICH CAHPS facility-level data when we post survey results to the Dialysis Facility Compare web site. In addition, facilities can contract with their vendors for reports on the survey results. There are some reporting restrictions in order to avoid facilities using demographic data to identify individual respondents.

11. Literacy level of survey is too high

Response: The survey was previously tested in a sample ICH-eligible population. We are in consideration of reassessing the questions in the survey and will examine the readability in another sample ICH-eligible population when we do.

12. Survey results arrive too late for timely action on identified issues/scores

Response: As we continue to offer the survey, we are looking for ways to streamline the process to reduce the time between survey administration and providing results to providers.

13. Survey should be translated into at least 5 languages

Response: We currently offer the ICH CAHPS Survey in three languages in addition to English. They are Spanish, Samoan, and Traditional and Simplified Chinese. We welcome suggestions for additional languages and will expand offering where there is need and when it is feasible.

14. Survey should be available in an auditory form for ESRD patients with low/no vision due to diabetic conditions

Response: Some of the vendors offer the survey by telephone. If a facility has patients who would benefit from an auditory form of ICH CAHPS, they should take this under consideration when selecting a vendor to administer the survey.