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| Topic | Theme | Concepts |
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Internet use | Use of the Internet for cancer information | Survivorship
Disease information
Clinical trials
Medication
Nutrition
Use of specific websites including Medline, WebMD, Facebook, and local patient portal |
| For medical information | Test results
Choosing a doctor |
| Internet for social and practical purposes | Social networking and support
News
Manage finances |
| Mode of Internet use | Do not rely solely on Internet for medical information
Limited use of smartphones
Primarily use computers at home, work, and at the clinic
Need assistance from friends/family to use Internet |
|
| Communication with healthcare providers | Patient related barriers | Language barriers
Difficulty discussing sensitive topics
Nervousness hinders communication
Prefer to use Spanish websites |
| Provider related barriers | Providers unavailable for communication by phone/email |
|
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Appraisal of symptom and quality of life issues | Add/revise skin-related symptoms | Discoloration, skin irritation, dryness, and burns |
| Add/revise emotional symptoms | Include bad mood, anxiety, motivation, peace, and tranquility |
| Add additional symptoms | Runny nose, fever, problems with urination, weight gain, and headaches |
| Symptoms for possible revision | Prefer “tiredness,” “weariness,” or “exhaustion” over fatigue
Revise “poor emotional state” for clarity
Specify type of “pain” |
|
Feedback regarding Spanish ESRA-C | Perceived benefits | Improved communication with providers
Can report symptoms and get information in private
Helps to know what to expect
“Real time” symptom appraisal
Asks about suicidal thoughts and depression |
| Perceived barriers to use | Medical terminology difficult to understand
Wants to be sure healthcare team will get the information |
| Suggestions for changes to assessments/responses | Prefer faces scale for pain assessment
Question “never” as an appropriate response to SQOL
Discussion of pain levels not clear (0–10 scale)
Response of “more than half the days” difficult to understand |
| Suggestions for additional features and messaging | More personal experiences from a patient perspective
More familiar and identifiable icons
Message that “cancer” does not necessarily mean death
Search function
Newsletter
Dictionary of terms
Email
Moderated chat with other patients
Caregiver assessments and resources
Message that spirituality and faith are useful for coping with cancer
Nutritional information
Prevalence of symptoms
Prevalence of different types of cancer
What to expect from chemotherapy and radiation therapy |
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