Table 3.
Prevalence of IVR-tracked patient and caregiver symptoms reported in audio diaries
| Patient | ||
|---|---|---|
| Symptom | Frequency (%) |
Exemplary Quote |
| Fatigue or weakness | 138 (26.54) | He has declined significantly. He can’t stand, he can’t even sit up anymore. We’ve got him in a hospital bed, and we put a catheter in today. He’ll never walk again. He’ll never sit up on his own. |
| Pain | 120 (23.08) | It’s just that when he has so much pain it is hard for him to think straight or to rationalize correctly. But once the pain is gone, he is fine. And because of the pain he knows that the cancer is advancing. |
| Confusion | 83 (15.96) | Evidently a couple of days ago he said he thought he heard my voice calling him and so he wandered around outside looking for a while. He didn’t get lost which was sort of amazing and he did come back in the house. And he didn’t realize he’d ever had cancer when my daughter talked to him this morning. |
| Trouble eating, poor appetite | 55 (10.58) | She ate two bites, not even and a sip of coffee and that was it. That was her whole meal yesterday but literally that was more than she’d eaten for some days, for a few days at a time. |
| Trouble sleeping | 41 (7.88) | My husband was getting upset because he couldn’t sleep that night. He was sitting up in our TV room. |
| Depressed mood | 30 (5.77) | For the first time in a long time, she was very down about how she’s doing and how long she’ll be able to hold on. |
| Constipation or diarrhea | 28 (5.38) | He has constipation- has not had a bowl movement probably this will be day 4 – he doesn’t want to take Zena or parallax often. |
| Anxiety or nervousness | 25 (4.81) | The last thing I want is for her to be experiencing any kind of negative emotions. I don’t want her worrying about anything, I don’t want her thinking about bad things that happened in the past, and she said she just can’t stop thinking about these things. |
| Caregiver | ||
| Anxiety or nervousness | 86 (47.51) | In any case, we don’t know. And so new symptoms are what would I say…. Worrisome, and different symptoms are worrisome, and you always wonder. |
| Fatigue | 40 (22.10) | I’m extremely tired. I’m so fricking tired I can’t get anything straight. I’m so tired. |
| Depressed mood | 29 (16.02) | This has been a difficult day for me emotionally where I have just started crying from time to time and I don’t even know why I’m crying. |
| Trouble sleeping | 17 (9.39) | I’ve been woken up every 3 to 4 hours by my relative who has been having a very hard time breathing and so I’ve been very tired. |
| Spiritual distress | 9 (4.97) | You feel like you lose your life because you have no freedom anymore. You’re tied to home and tied to caring for them. You love them and stuff, so you stay and do it but it’s very emotional, very draining. |