Table 4.

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.