1) There are no data except death statistics and those deaths may not be because patients didn't have access to dialysis, but it may be that their primary care doctors didn't recommend it or the patient may have chosen not to do dialysis.
- Financial: This may be a perception not a real barrier since most people with ESRD qualify for Medicare and those with low enough income and assets qualify for Medicaid. The American Kidney Fund assists with health insurance premiums for patients with donations from dialysis providers and others.
- What others have told them: People with CKD facing kidney failure may know someone who had a negative experience with dialysis and they assume that would be their experience, leading them to choose not to dialyze.
- Physicians lack info about clinical/technological changes: Primary care physicians and other non-nephrologists may lack information about the current state of dialysis and newer treatment options which may adversely affect what they tell patients (especially elderly ones) about what dialysis is like
- Late referral to nephrologists hampers efforts to prolong kidney function and to educate patients about treatments that might fit better with their lifestyle and goals.
- Lack of referral for CKD patient education about home modalities, which could increase access to 1) patients who live far from a dialysis facility or reduce trips to dialysis facility for patients with no or unreliable transportation where public transportation doesn't exist.
[FONT=Calibri][SIZE=3]- Lack of CKD education: Nephrologists do not refer all CKD patients to available patient education programs. They may be making assumptions about which patients are interested in learning.
- Negative bias: Many physicians, including nephrologists have low perceptions of their patients' abilities to comply with their prescription and some actually have a bias against PD so they do not encourage patients to consider PD or home HD
- Reimbursement: Nephrologists' reimbursement is based on the number of visits/month and they or nurse practitioners, clinical nurse specialists or physician assistants in their practice can see all patients doing in-center HD in a limited amount of time to get the maximum reimbursement, and while home patients are typically seen in clinic monthly, which can take several hours for the same Medicare payment as seeing an in-center patient 3x/month.
[/SIZE][/FONT] 3a) In your experience, are patients receptive to home PD or do they prefer in-clinic dialysis?
- There are patients who are overwhelmed initially and have little self-confidence about their ability to do for themselves and in-center dialysis actually fosters dependency.
- Patients who receive CKD education or who visit websites/message boards/Facebook pages (like Home Dialysis Central, I Hate Dialysis, Home Dialyzors United, etc.) and take the time to learn about treatment options are much more receptive to PD than those who don't do any of these things. In 2011 less than 2% of CKD patients had Medicare claims for kidney disease education. Other CKD patients are educated through programs offered by providers and others, including Missouri Kidney Program that I coordinate classes for in Kansas City.
3b) How receptive do you think nurses/patients would be to a new technique for PD catheter placement?
- I don't know how much nurses or patients know about PD catheter placement. I don't know if patients fail to choose PD because of how a PD catheter is placed. That said, if the new surgical technique heals faster with less discomfort and has a lower risk of surgery-related infections, education about that might increase nephrologists' willingness to consider patients for patient and more of those patients who are educated about PD to choose PD.
Many patients with limited income do not have a car and come to dialysis using transportation services. If they are single and don't live close to family, they may not have the support that can help patients do well on dialysis. If they have limited education and no job, they live under a great deal of stress not knowing how they can pay their bills. They may not have a grocery near where they live to be able to buy the food they're supposed to eat. They may not ask questions because they don't know what to ask, they're embarrassed to ask, or because staff always seem to busy to take the time to answer their questions. They may feel hopeless and may be depressed and need lots of help with financial concerns, However, the dialysis facility social worker, who could help them, often has too large a caseload and too many clinics to cover to devote the attention to them that they need.
You may want to contact the American Nephrology Nurses' Association (https://www.annanurse.org/) for nurses and the American Association of Kidney Patients (https://aakp.org/) or Dialysis Patient Citizens (https://aakp.org/) and ask if they would be willing to announce your desire to talk with nurses and patients.