Table 4.
Prevalence of additional patient and caregiver symptoms reported in audio diaries
| Patient | ||
|---|---|---|
| Symptom | Frequency (%) | Exemplary Quote |
| Increasing sleepiness/sleep | 40 (26.32) | [His] symptoms of falling asleep all day long is getting worse and worse. He’s been asleep most of the day. |
| Breathing difficulties | 37 (24.32) | She has been wheezing really bad, I mean you can hear her from far away, and she says that she can’t get enough air. Sometimes she feels like she’s not able to catch her breath. |
| Edema and swelling | 16 (10.53) | I’m amazed that his feet don’t hurt because the edema is so bad. I mean the skin is just so stretched out. |
| Nausea and vomiting | 10 (6.58) | He’s been having a lot of nausea and a lot of vomiting in the last several days. Really in the last 24 hours. |
| Skin issues (e.g., breakdown, ulcers, bruising) | 10 (6.58) | She has begun to develop a bedsore on her back, lower back which has been distressing. And very distressing for her because it is a symptom that is of course not directly… we’ve gotten used to her cancer and this is something that’s a little bit different and obviously concerning for us. |
| Sensory changes (sight, hearing) | 10 (6.58) | The hearing is still weak. We thought maybe yesterday he heard a little bit but now I don’t think so. That’s the difficult part. Him not being able to hear anything to say. |
| Behavioral changes/difficult behaviors | 7 (4.61) | We had a sleepless night last night because of her restless ness and her actually physically combating in trying to get her medications down. The biggest challenge in my life by the very worst magnitude. |
| Neuropathy | 7 (4.61) | [He] started feeling increased pain in his extremities especially for the last two or three days and increased neuropathy. Which really got him down. This is what he really wants to be able to get over with before he dies so he has a time, a period of time that we can do things in our little bucket list. |
| Communication changes | 5 (3.29) | I feel stressed because he’s lost his voice and he can’t talk and relay his thinking. |
| Dizziness | 4 (2.63) | Extremely dizzy. Difficulty getting up on and off. |
| Seizures/Changes in consciousness | 3 (1.97) | [He] started having seizures when he stands up to pee. And now he can’t get out of bed unless somebody is there with him. So, someone has to be in the room with him all the time. |
| Bleeding | 3 (1.97) | So in the last 24 hours the vaginal bleeding has gotten significantly worse and there’s not really much we can do about it because of how far along she is in the cancer. |
| Caregiver | ||
| Difficult emotions (e.g. guilt, resentment, anger) | 14 (29.17) | I feel like I’m actually her servant and I don’t want to feel that way because I don’t want any hard feelings. I don’t want to begrudge. I don’t want to feel bad about anything because I’m trying to help her. |
| Physical illness that impacts caregiving | 12 (25.00) | What happens when the caretaker really gets sick. I am sick right now. Don’t feel very well but I’ve got to get going. Because there is nobody else to feed my husband. |
| Pain | 12 (25.00) | It has more to do with I’m arthritic and old and it’s raining and I hurt. |
| Stress | 10 (20.83) | It can be stressful it’s basically a rollercoaster and each day is drastically different than the other. |