Components of treatment burden reported by patients and kidney care team members
| Patients | Professionals | ||
| Treatment burden | Understanding CKD, its treatment and consequences | Given inadequate information to manage condition | Health literacy issues, language barriers |
| Information gathering | Perceived lack of benefit in medications | ||
| Conflicting advice | Conflicting advice | ||
| Anxiety/uncertainty about future | Anxiety/uncertainty about future | ||
| Multimorbidity and polypharmacy adding complexity | Multimorbidity and polypharmacy adding complexity | ||
| Adhering to treatments and management | |||
| Appointments | Making note/keeping track of multiple appointments | Making note/keeping track of multiple appointments | |
| Travel to appointments/no local care | Travel to appointments/no local care | ||
| Parking | Parking | ||
| Long waiting times | Long waiting times | ||
| Wasted time and effort | Wasted time and effort | ||
| Medication | Lack of choice/lack of medication review | ||
| Remembering names of or distinguishing medications | Remembering names of or distinguishing medications | ||
| Practical difficulties with handling medication | Practical difficulties with taking medication | ||
| Keeping up with changing medication | |||
| Challenges filling prescriptions | |||
| Multimorbidity and polypharmacy adding complexity | |||
| Lifestyle changes | Changing diets | ||
| Bladder issues | |||
| Interacting with others | Difficulty obtaining GP appointments | Difficulty obtaining GP appointments | |
| Short appointment lengths | |||
| Unexpected changes to healthcare (eg, being taken off dialysis list) | |||
| Lack of interpersonal continuity of care | Lack of interpersonal continuity of care | ||
| Communication barriers with health professionals | Communication barriers with health professionals | ||
| Lack of communication and coordination between primary and secondary care | |||
| Lack of communication and coordination between specialists | Lack of communication and coordination between specialists | ||
| Lack of standardised procedures (eg, different blood forms) |
*Differences in perspectives highlighted in bold.
CKD, chronic kidney disease; GP, general practitioner.