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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 |
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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” |
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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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