How Do You Monitor Home Dialysis Experience with Care?

I learned recently that CMS had a visit from some home dialyzors who pointed out that they knew that in-center HD patients’ experience of care was collected by CMS as part of the quality incentive program (QIP), but CMS doesn’t require facilities to report home patients’ experience of care or satisfaction.

They’re right.

CMS does not have or recommend a survey for clinics to use to measure patient experience of care like the ICH CAHPS. However, the ESRD Conditions for Coverage at 42 CFR 494.110(a)(2)(viii) does require dialysis facilities to monitor patient satisfaction and grievances for ALL patients as a component in their quality assessment and performance improvement (QAPI) program (see page 256).

In the past I thought the Dialysis Patient Satisfaction Survey (DPSS) that was developed by RAND with funding from Baxter Corporation in 1998 might be an option. It has 40 questions and can be completed in-person or by phone in less than 15 minutes. However, after looking at the survey again, I don’t believe the questions reflect today’s home HD and PD experience. This makes me wonder how dialysis facilities are monitoring their home dialysis patients’ experience of care and responding to their concerns.

I’m wondering if we should work to develop and pilot test a survey that could be used to survey patients’ experience with their care. Would the following questions identify key things patients care about regarding their treatment type, including the services they’re getting from dialysis facilities and supply companies? What else is missing?

• How do you rate your training for home dialysis? (Poor, Fair, Good, Excellent for each)
  • How soon you began training after you chose a home treatment
  • Length of time you were in training
  • Content of training manual
  • Training schedule
• How well can you handle equipment or supply problems at home? (same 4 point scale)
• How well can you handle treatment emergencies at home? (same 4 point scale)
• How well do you know what to do you if can’t do your dialysis at home? (same 4 point scale)
• How do you rate each of these staff for giving you clear answers to your questions or concerns? (same 4 point scale for each)
  • Nephrologist
  • Home training nurse
  • Dietitian
  • Social worker
  • Technicians who service my machine
• Do the days and times of clinic appointments meet your needs? (Yes/No)
  • If not, tell us what would work better for you (open ended)
• Are you as involved in planning your care as you’d like to be? (Yes/No)
  • If not, how could we involve you more? (open ended)
• Do you see these clinic staff as often as you need to? (same 4 point scale for each)
  • Nephrologist
  • Home training nurse
  • Dietitian
  • Social worker
• How satisfied are you with your home dialysis equipment? (same 4 point scale)
  • If not, describe
• How satisfied are you with your home dialysis supplies? (same 4 point scale)
  • If not, describe
• How satisfied are you with your supply company? (same 4 point scale for each)
  • Customer service staff
  • Clinical staff for treatment questions
  • Technical staff for machine questions
  • Delivery staff
• How satisfied are you with the treatment you are doing? (same 4 point scale)
• What other treatments do you want to learn more about? (check all that apply)
  • Standard in-center HD 3 times a week
  • Nocturnal in-center HD
  • CAPD (manual PD exchanges)
  • CCPD (PD using a cycler machine)
  • Standard home HD
  • Daily home HD
  • Nocturnal home HD
  • Deceased donor transplant
  • Living donor transplant
• Are there any other things you’d like to share with us to help you feel more comfortable doing your treatment?

If we can identify areas where ratings are low, perhaps we can improve patients’ experience with their care, which should help patients stay on home dialysis longer. Home dialysis services are required by regulation at 42 CFR 494.100 to be “at least equivalent to those provided to in-center patients” (see page 223). To monitor how well home programs are meeting that requirement, home patients deserve an equivalent measure of their experience with care to what in-center HD patients have.