Main challenges related to burden of treatment
| Challenge | Group of patient mostly affected | Type of country mostly affected | Severity |
| Limited access to healthcare for the uninsured or underinsured. | CKD, ESKD | LMIC | +++ |
| Dialysis, transplant surgery, immunosuppressive drugs were often beyond the reach of low-income patients. | ESKD | LMIC | +++ |
| Healthcare was often fragmented and of indeterminate duration for the uninsured or underinsured. | CKD, ESKD | LMIC | +++ |
| In settings with healthcare coverage, socially disadvantaged patients found it difficult to access financial support. | CKD, ESKD | HIC | ++ |
| Fund-raising was important for those who were uninsured or underinsured. | ESKD | LMIC | +++ |
| For non-native speakers, language was an important barrier for having a discussion with care providers. | CKD, ESKD | LMIC, HIC | ++ |
| Patients were often poorly informed about disease progression and treatment options. | CKD, ESKD | LMIC, HIC | ++ |
| Patients and carers had to identify institutions to obtain diagnosis, laboratory results and treatment. | CKD, ESKD | LMIC | ++ |
| Homelessness, unsuitable housing, lack of utilities, critical to self-care and home dialysis. | ESKD | HIC, LMIC | ++ |
| Loss of employment may lead to uninsurance or underinsurance limiting or preventing access to treatment. | ESKD | HIC, LMIC | +++ |
| Complex medication regimens were managed through dispensing aids, associated activities, family support. | CKD, ESKD | HIC, LMIC | + |
| When taking care of their vascular access, patients made efforts to protect the arm. | ESKD | HIC, LMIC | + |
| Patients controlled diets and fluid intake, modified social activities to minimise exposure and pressure. | CKD, ESKD | HIC, LMIC | ++ |
| Patients often travelled for long distances to dialysis centres, three times a week. | ESKD | HIC, LMIC | ++ |
| Home dialysis patients had to pay transport to training, appointments and other check-ups. | ESKD | HIC, LMIC | ++ |
| Patients arranged daily activities between sessions. | ESKD | HIC, LMIC | + |
| For home dialysis, training was required with extended periods off work. | ESKD | HIC, LMIC | + |
| For home dialysis, homes needed physical adaptation. | ESKD | HIC, LMIC | + |
| For home dialysis, tasks were managing treatment, monitoring, titrating medications, adopting aseptic techniques. | ESKD | HIC, LMIC | ++ |
| Pretransplantation, specific adjustment tasks included: hospital visits, tests and organising payment for treatment. | ESKD | HIC, LMIC | |
| Some people needed to negotiate donation of a kidney by living relatives or others. | ESKD | HIC, LMIC | ++ |
| Transplanted patients managed complex medication regimens. | ESKD | HIC, LMIC | + |
| Transplanted patients needed to manage relationships, finances and family responsibilities. | ESKD | HIC, LMIC | ++ |
| Symptoms associated with dialysis limited daily activities, sometimes overlooked by healthcare professionals. | ESKD | HIC, LMIC | ++ |
| When in poor health, wider networks were necessary for daily activities, transportation, symptom management. | ESKD | HIC, LMIC | ++ |
| Information on disease and treatment was often insufficient or difficult to comprehend. | ESKD | HIC, LMIC | ++ |
| Information about immunosuppression was hard to obtain. | ESKD | HIC, LMIC | ++ |
| Lack of social support was a frequently reported problem. | ESKD | HIC, LMIC | ++ |
| Many clinicians failed to discuss care, eligibility for transplant and potential donors. | CKD, ESKD | HIC, LMIC | ++ |
| Carers needed more information on dialysis techniques to feel confident. | ESKD | HIC | + |
| Patients and carers emphasised self-determination, autonomy and dignity when nearing end of life. | ESKD | HIC | ++ |
Severity: + mild, ++ moderate, +++ very severe.
CKD, chronic kidney disease; ESKD, end-stage kidney disease; HIC, high-income country; LMIC, low-income and middle-income country.