Article Figures & Data
Figures
- Figure 1.
The top thirty research uncertainties were developed through a national survey, followed by a process to combine and prioritize research uncertainties.
Tables
Variable Patients (n=173) Health Care Professionals (n=107) Caregivers (n=37) Patient receiving in-center hemodialysis 92 (53) Patient receiving home hemodialysis 18 (10) Patient receiving peritoneal dialysis 38 (22) Patient not receiving dialysis 25 (14) Physician 25 (23) Nurse 38 (36) Dietitian 6 (1) Social worker 6 (1) Member of an organizationa 5 (5) Other health care professional 27 (25) Age 18–29 yr 5 (3) 5 (6) 3 (10) 30–39 yr 15 (10) 20 (23) 3 (10) 40–49 yr 24 (16) 26 (30) 6 (21) 50–59 yr 34 (22) 24 (28) 6 (21) 60–69 yr 43 (25) 10 (11) 10 (34) 70–79 yr 22 (18) 2 (2) 1 (3) ≥80 yr 11 (6) 0 0 Sex Male 80 (52) 59 (68) 25 (86) Female 73 (48) 28 (32) 4 (14) Ethnicity Aboriginal 2 (1) 0 1 (3) Asian 9 (5) 12 (11) 1 (3) Black 8 (5) 0 1 (3) Mixed 3 (2) 2 (2) 1 (3) Other 7 (4) 1 (1) 0 White 119 (69) 70 (65) 23 (62) Prefer not to say 25 (14) 22 (21) 10 (27) Province Atlantic 28 (18) 9 (10) 4 (14) British Columbia 6 (4) 5 (6) 3 (10) Ontario 55 (36) 24 (28) 13 (45) Prairies (Alberta, Saskatchewan, Manitoba) 58 (38) 45 (52) 9 (31) Quebec 5 (3) 4 (5) 0 Territories 1 (1) 0 0 Values are expressed as the number (percentage) of patients. Because not all of the demographic questions were mandatory, the categories do not all add to their respective denominators.
↵a Typically represented members or volunteers of the Kidney Foundation of Canada, who advertised the web survey on their website and Facebook page.
Taxonomy Category Participants, n (%) (n=1570) Severe kidney disease (not yet receiving dialysis) 302 (19.2) Peritoneal dialysis 39 (2.5) Hemodialysis 168 (10.7) Hemodialysis vascular access 170 (10.8) Chronic complications 76 (4.8) Diet 161 (10.3) Symptoms 274 (17.5) Health system services 71 (4.5) Communication 43 (2.7) Education 67 (4.3) End of life 7 (0.4) Other 192 (12.2) Research Uncertainty Source,a Themes, and Uncertainties Encompassed 1. What is the best way to enhance communication between health care professionals and patients and to maximize patient participation in decision making with regard to the advantages and disadvantages of different forms of dialysis, and access to test results to facilitate self-management? Source: Mostly patients, but also some health professionals and caregivers Themes Inform decision making about dialysis treatment options Need for improved communication among all parties (doctors, nurses, patients, etc.) Potential for patients to be more engaged in their own care (e.g., by means of having access to test results, information about blood-work and effects of medications) Having access to information about others’ experiences (and what the pros/cons were) in the context of decision making Combined the following uncertainties: “What is the best way of informing patients with kidney failure about the advantages and disadvantages of different forms of dialysis; and how can we ensure that people get the right information, at the right time, and in the right way to ensure informed decision-making?” “How can communication between patients with kidney failure and health care providers be improved, and does enhanced communication (including providing test results) increase patients’ ability to participate in the management of their condition?” 2. How do different dialysis modalities compare in terms of their effect on quality of life, mortality, and patient acceptability, and are there specific patient factors that make one modality better for some patients with kidney failure than others? Source: Noted by a similar proportion of patients and health professionals, and some caregivers Themes Uncertainties by health professionals were mostly related to comparison of dialysis modalities (PD versus HD, nocturnal HD versus short/frequent HD, home versus hospital HD) in terms of quality of life and mortality Many patients submitted uncertainties about determining the optimal length of time and frequency of HD for individual patients, and their impact on outcomes, with the potential that patients’ quality of life could be improved with shorter HD sessions This question was combined with a second uncertainty noted within the top 30: “How can hemodialysis be tailored to a patient [in terms of: length, frequency, location and schedule (e.g. day/nighttime)] to enhance effectiveness and quality of life?” 3. What are the causes and effective treatment(s) of, and ways to prevent, itching in dialysis patients? Source: Mostly patients Themes Causes of itchy skin Best treatment for itching Availability of improved treatments 4. What is the best strategy to increase kidney transplantation, including access to transplantation, increasing the efficiency of the recipient workup, and increasing the availability of donor kidneys? Source: Mostly health professionals, but also some patients and care providers Themes Improving access to donor kidneys and transplantation How transplantation workup could be more efficient 5. What is the psychological and social impact of kidney failure on patients, their family, and other caregivers, and can this be reduced? Source: Mostly health professionals, but also by patients Themes Impact of dialysis on caregivers (particularly in the case of home dialysis patients) Impact of dialysis on patients and the family unit and close friends Potential interventions to reduce the burden of dialysis 6. What are the best ways to promote heart health in dialysis patients, including management of BP? Source: Noted by a similar proportion of patients and health professionals Themes Identification of treatments that would reduce the effect of heart disease in people with kidney failure receiving dialysis Identification of appropriate BP target(s) for dialysis patients Management of elevated BP Concern about damage to organs and arteries if BP is not controlled properly 7. For people with kidney failure, what is the effect of each of the dietary restrictions (sodium, potassium, phosphate) separately, and when taken in combination, on important outcomes, including quality of life? Source: Mostly patients, but also health professionals and some caregivers Themes Benefits associated with strict dietary restriction Whether adherence to a renal diet improves health outcome(s) in dialysis patients Whether dietary restrictions could be relaxed in some way because they have a significant effect on quality of life 8. What are the best ways to manage symptoms in people receiving or nearing dialysis, including poor energy, nausea, cramping, and restless legs? Source: Mostly patients, some health professionals and a few care providers Themes Complications that arise with dialysis treatment (e.g., headaches, nausea, cramping, and poor energy) and how to effectively treat them Optimal method to determine the amount of fluid to remove, so as to prevent low BP and fatigue Combined “What are the causes and effective treatment(s) of poor energy in dialysis patients?” “What are the best ways to manage or prevent complications that occur during or shortly after the hemodialysis treatment itself (i.e. low blood pressure, cramping, nausea, headaches)?” “What are the causes and effective treatment(s) of, and ways to prevent, cramping in dialysis patients?” 9. What are the causes and effective treatment(s) of depression in dialysis patients? Source: Noted by a similar proportion of patients and health professionals Themes Emotional effect of dialysis on the patient How to manage mood changes and depression, and what may be responsible for depression (i.e., the adverse effects of medications or other treatments, or kidney disease itself) 10. What is the best vascular access (among both new and existing types of access) for people receiving hemodialysis? Source: Mostly health professionals, although some patients and care providers Themes Identification of the best vascular access options across different patient types How the access should be placed and by whom, and how it should be managed Which access option offers patients the best quality of life, which one lasts the longest, and which one has the fewest complications Potential for less invasive methods of access in the near future PD, peritoneal dialysis; HD, hemodialysis.
↵a “Source” refers to the group that noted the uncertainty within the survey.
- 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.
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