Table 4.
Comparing the top 10 uncertainties identified by patients, caregivers, physicians, and nurses who responded to the survey
| Rank | Question |
|---|---|
| Patients | |
| 1 | How does one determine the optimal length of time and frequency of HD for a particular patient and how can dialysis be tailored so each patient gets effective dialysis in the shortest possible time? |
| 2 | What are the cause, prevention and treatment of itching in dialysis patients? |
| 3 | What are the causes and treatments of poor energy in dialysis patients? |
| 4 | What options or strategies (i.e., financial, etc.) are available to assist the ability of a dialysis patient to travel? |
| 5 | What are the causes and treatment of sleep disorders in dialysis patients? |
| 6 | What is the cause and treatment of depression in dialysis patients? |
| 6 | What is the effect of exercise on a dialysis patient's health? |
| 8 | What is the frequency, causes and treatment of restless leg syndrome? |
| 9 | What are the most effective means (including medications, supplements, diet, exercise and other lifestyle factors) of preventing or slowing the progression of chronic kidney disease? |
| 9 | What is the best treatment for cramping in dialysis patients? |
| Caregivers | |
| 1 | What are the most effective means (including medications, supplements, diet, exercise and other lifestyle factors) of preventing or slowing the progression of chronic kidney disease? |
| 1 | How could dialysis delivery be improved to offer patients the best possible quality of life? |
| 1 | Are there strategies to reduce wait times (for a transplant) and what is the best method of working people up for transplantation? |
| 1 | For how long is dialysis an effective treatment and what happens after dialysis is no longer an appropriate treatment? |
| 1 | Can a smaller, portable and more efficient dialysis machine be developed? |
| 1 | What are the benefits and risks of grafts versus fistulae versus catheter? |
| 1 | Does following the renal diet improve outcome? (outcomes include slowing progression of kidney disease, increasing survival, life expectancy, health) |
| 2 | Is dialysis modality going to impact how long I live, how well I live (i.e., my quality of life), and which modality has a higher success rate on a per-patient basis? |
| 2 | What is the best strategy to maximize the availability/supply of kidneys? |
| 2 | When is the optimal time to get on the wait list (for a transplant)? |
| 2 | How does one determine the optimal length of time and frequency of HD for a particular patient and how can dialysis be tailored so each patient gets effective dialysis in the shortest possible time? |
| 2 | Can the length of HD be shortened? |
| 2 | [What are the] gaps in information regarding food preparation and food content for a renal diet? |
| 2 | What is the effect of exercise on a dialysis patient's health? |
| 2 | What are the effects of prescribed drugs (i.e., cardiovascular drugs, vitamin D, antidepressants) on dialysis patients? |
| Physicians | |
| 1 | What are the benefits and risks of grafts versus fistulae versus catheter? |
| 1 | What are the complications and side effects of treatment for calcium and phosphate imbalance? |
| 3 | Is dialysis modality going to impact how long I live, how well I live (i.e., my quality of life), and which modality has a higher success rate on a per-patient basis? |
| 3 | What is the cause, prevention and treatment of itching in dialysis patients? |
| 5 | When is the optimal time to initiate dialysis and what is the role of lab testing in the decision to initiate dialysis? |
| 5 | How could dialysis delivery be improved to offer patients the best possible quality of life? |
| 7 | How does one determine the optimal length of time and frequency of HD for a particular patient and how can dialysis be tailored so each patient gets effective dialysis in the shortest possible time? |
| 7 | What is the impact of phosphate restriction on health outcome(s)? |
| 7 | What is the best treatment for cramping in dialysis patients? |
| 7 | What are the effects of prescribed drugs (i.e., cardiovascular drugs, vitamin D, antidepressants) on dialysis patients? |
| Nurses | |
| 1 | When is the optimal time to initiate dialysis and what is the role of lab testing in the decision to initiate dialysis? |
| 1 | How does one determine the optimal length of time and frequency of HD for a particular patient and how can dialysis be tailored so each patient gets effective dialysis in the shortest possible time? |
| 3 | Is dialysis modality going to impact how long I live, how well I live (i.e., my quality of life), and which modality has a higher success rate on a per-patient basis? |
| 4 | What is the frequency, causes and treatment of restless leg syndrome? |
| 5 | What are the most effective means (including medications, supplements, diet, exercise and other lifestyle factors) of preventing or slowing the progression of chronic kidney disease? |
| 6 | How could dialysis delivery be improved to offer patients the best possible quality of life? |
| 6 | What are the eligibility criteria for transplantation and how can we improve access and the selection process for transplantation? |
| 6 | What are the benefits and risks of grafts versus fistulae versus catheter? |
| 6 | What are the complications and side effects of treatment for calcium and phosphate imbalance? |
| 6 | What are the causes and treatments of poor energy in dialysis patients? |
| 6 | What is the cause and treatment of depression in dialysis patients? |
| 6 | [What is known about the status or state of] informed decision-making in dialysis patients; i.e., how much choice do they have when it comes to their options? |
| 6 | What are the effects of prescribed drugs (i.e., cardiovascular drugs, vitamin D, antidepressants) on dialysis patients? |
| 6 | How can medication compliance be improved? |
| 6 | Are there social barriers or other structural factors that determine choice of modality? |
HD, hemodialysis.