Table 2:

Chronic kidney disease self-management topics and features of electronic health tool, with content suggestions and corresponding dot counts

VariablePriorityContent suggestionsDot count
Understanding chronic kidney diseaseHighBasic information about chronic kidney disease
  • What causes chronic kidney disease

  • Impact of chronic kidney disease and how to manage it (lifestyle, well-being)

  • How to assess risk of progression

  • Understanding estimated glomerular filtration rate

Basic information about kidneys and what they do17
How to slow progression15
MediumWhere to find credible and reliable information on chronic kidney disease
LowHow to prevent chronic kidney disease2
Timing of symptoms in relation to chronic kidney disease progression1
Learning new skills to manage chronic kidney disease1
Fertility and family planning0
DietHighReliable information on diet and nutritional requirements18
Dietary changes required for chronic kidney disease and comorbidities (e.g., diabetes)17
Renal-friendly/-unfriendly foods (what to eat/not to eat)15
MediumHow to read food labels7
Meal planning (e.g., how to make modifications)7
LowDiet-tracking tools2
How to identify renal-friendly food that is affordable2
Cooking classes0
SymptomsHighHow to manage symptoms and when to seek help18
What the symptoms of chronic kidney disease are, what causes them, what to expect as chronic kidney disease progresses14
When to act on symptoms, severity of symptoms12
Considerations for comorbidities and impact of treatment for other conditions11
Symptom expectations6
LowHow to slow progression of symptoms2
Lack of symptoms (“silent disease”)1
MedicationsHighCommon medications for chronic kidney disease, adverse effects to watch for and how to manage them22
Indications for medications20
Cost, coverage, insurance for medications18
MediumLong-term use of medications and implications4
LowMedication interactions3
Interactions between Western and alternative therapies2
How to facilitate pill-taking0
Medication diary0
Mental and physical healthHighRecognition of mental health issues as a symptom of chronic kidney disease19
Support for patients and broader circle (e.g., family, caregivers) for mental and physical wellness13
Recognition of cultural sensitivity11
Screening for depression10
Addressing how to adjust to “new normal”10
MediumResources and support for mental health issues (e.g., anxiety, guilt, coping with burden)5
FinancesHighAffordability and accessibility of medications, equipment, food23
Financial coverage and resources22
Long-term financial planning21
TravelHighTravel limitations18
Travel insurance17
Accessing health care abroad14
What to bring on work/leisure trips10
MediumMedications for travel/letter of support7
Travel to appointments and how to minimize travel burden5
LowSupport for caregiver travel1
Volunteer drivers and supported transit1
Work and schoolHighAccommodating work/school environment18
Integrating diet and medications into lifestyle (e.g., work and school environment)16
Supports and considerations for returning to work/school15
Restrictions for work/school11
LowArranging for respite1
Features of electronic health toolHighPictures and visuals15
Ability to enter and track health information13
Accessible/“on-the-go” access to information12
Links to resources12
Ability to interact virtually with health care team12
Access to electronic personal health information12
MediumMatrix style (ability to drill down to more detailed information)9
Simple tool9
Ability to build own profile9
Quick tips and tools8
Online chat group8
Caregiver section7
Multimedia format (multiple features)7
Regular updates6
Reminders, alerts6
Secure messaging6
Privacy considerations5
LowMultiple languages4
Mobile app3
Information organized by disease stage3
Different sensory needs (e.g., visual, hearing) acknowledged2
Reliable, credible information2
Ability to download or save content2
Searchable feature2
Personal/patient stories2
Stage of readiness to learn considered2
Virtual coach2
Tinder-like application1
Favourites option1
Print feature1
Forum to submit questions1
Podcasts/audio files1
Hierarchical format0
Ability to share calendar0
Decision aids0
Help feature (tool-use training)0
  • * Topics were not ranked.