Chronic kidney disease self-management topics and features of electronic health tool, with content suggestions and corresponding dot counts
| Variable | Priority | Content suggestions | Dot count |
|---|---|---|---|
| Topic* | |||
| Understanding chronic kidney disease | High | Basic information about chronic kidney disease
| 20 |
| Basic information about kidneys and what they do | 17 | ||
| How to slow progression | 15 | ||
| Medium | Where to find credible and reliable information on chronic kidney disease | ||
| Low | How to prevent chronic kidney disease | 2 | |
| Timing of symptoms in relation to chronic kidney disease progression | 1 | ||
| Learning new skills to manage chronic kidney disease | 1 | ||
| Fertility and family planning | 0 | ||
| Diet | High | Reliable information on diet and nutritional requirements | 18 |
| Dietary changes required for chronic kidney disease and comorbidities (e.g., diabetes) | 17 | ||
| Renal-friendly/-unfriendly foods (what to eat/not to eat) | 15 | ||
| Medium | How to read food labels | 7 | |
| Meal planning (e.g., how to make modifications) | 7 | ||
| Low | Diet-tracking tools | 2 | |
| How to identify renal-friendly food that is affordable | 2 | ||
| Cooking classes | 0 | ||
| Symptoms | High | How to manage symptoms and when to seek help | 18 |
| What the symptoms of chronic kidney disease are, what causes them, what to expect as chronic kidney disease progresses | 14 | ||
| When to act on symptoms, severity of symptoms | 12 | ||
| Considerations for comorbidities and impact of treatment for other conditions | 11 | ||
| Medium | Fatigue | 6 | |
| Symptom expectations | 6 | ||
| Low | How to slow progression of symptoms | 2 | |
| Lack of symptoms (“silent disease”) | 1 | ||
| Medications | High | Common medications for chronic kidney disease, adverse effects to watch for and how to manage them | 22 |
| Indications for medications | 20 | ||
| Cost, coverage, insurance for medications | 18 | ||
| Medium | Long-term use of medications and implications | 4 | |
| Low | Medication interactions | 3 | |
| Interactions between Western and alternative therapies | 2 | ||
| How to facilitate pill-taking | 0 | ||
| Medication diary | 0 | ||
| Mental and physical health | High | Recognition of mental health issues as a symptom of chronic kidney disease | 19 |
| Support for patients and broader circle (e.g., family, caregivers) for mental and physical wellness | 13 | ||
| Recognition of cultural sensitivity | 11 | ||
| Screening for depression | 10 | ||
| Addressing how to adjust to “new normal” | 10 | ||
| Medium | Resources and support for mental health issues (e.g., anxiety, guilt, coping with burden) | 5 | |
| Finances | High | Affordability and accessibility of medications, equipment, food | 23 |
| Financial coverage and resources | 22 | ||
| Long-term financial planning | 21 | ||
| Low | Budgeting | 2 | |
| Travel | High | Travel limitations | 18 |
| Travel insurance | 17 | ||
| Accessing health care abroad | 14 | ||
| What to bring on work/leisure trips | 10 | ||
| Medium | Medications for travel/letter of support | 7 | |
| Travel to appointments and how to minimize travel burden | 5 | ||
| Low | Support for caregiver travel | 1 | |
| Volunteer drivers and supported transit | 1 | ||
| Work and school | High | Accommodating work/school environment | 18 |
| Integrating diet and medications into lifestyle (e.g., work and school environment) | 16 | ||
| Supports and considerations for returning to work/school | 15 | ||
| Restrictions for work/school | 11 | ||
| Low | Arranging for respite | 1 | |
| Features of electronic health tool | High | Pictures and visuals | 15 |
| Ability to enter and track health information | 13 | ||
| Accessible/“on-the-go” access to information | 12 | ||
| Links to resources | 12 | ||
| Ability to interact virtually with health care team | 12 | ||
| Access to electronic personal health information | 12 | ||
| Medium | Matrix style (ability to drill down to more detailed information) | 9 | |
| Simple tool | 9 | ||
| Ability to build own profile | 9 | ||
| Quick tips and tools | 8 | ||
| Online chat group | 8 | ||
| Caregiver section | 7 | ||
| Multimedia format (multiple features) | 7 | ||
| Regular updates | 6 | ||
| Reminders, alerts | 6 | ||
| Secure messaging | 6 | ||
| Privacy considerations | 5 | ||
| Low | Multiple languages | 4 | |
| Mobile app | 3 | ||
| Information organized by disease stage | 3 | ||
| Different sensory needs (e.g., visual, hearing) acknowledged | 2 | ||
| Reliable, credible information | 2 | ||
| Ability to download or save content | 2 | ||
| Searchable feature | 2 | ||
| Personal/patient stories | 2 | ||
| Stage of readiness to learn considered | 2 | ||
| Virtual coach | 2 | ||
| Tinder-like application | 1 | ||
| Favourites option | 1 | ||
| Print feature | 1 | ||
| Forum to submit questions | 1 | ||
| Filters | 1 | ||
| Podcasts/audio files | 1 | ||
| Hierarchical format | 0 | ||
| Ability to share calendar | 0 | ||
| Decision aids | 0 | ||
| Help feature (tool-use training) | 0 | ||
↵* Topics were not ranked.