In this study, data saturation was achieved with thirty-four participants, ranging in age from 25 to 65 years with a mean age of 51 years old. The median time since diagnosis was one year(range 0.2-42.8 years),table 3 summarized the participant characteristics.
Table 3
Characteristics of the Participants(N=34)
Characteristics
|
N (%)
|
Educational level
|
Middle school or below
|
17(50.0)
|
|
High school
|
4(11.8)
|
|
University or above
|
13(38.2)
|
Employment status
|
Employed full time
|
5(14.7)
|
|
Employed but on medical leave
|
5(14.7)
|
|
Retired
|
18(43.0)
|
|
Unemployed or homemaker
|
6(17.7)
|
Medical insurance
|
National medical insurance
|
26(70.6)
|
|
Rural cooperative medical insurance
|
7(20.6)
|
|
National medical insurance+ commercial insurance
|
1(2.9)
|
Living status
|
With family
|
28(82.4)
|
|
Alone
|
6(17.6)
|
Religion belief
|
None
|
26(76.5)
|
|
Buddhism
|
6(17.6)
|
|
Christianity
|
2(5.9)
|
Marital status
|
Married
|
26(76.5)
|
|
Unmarried
|
4(11.8)
|
|
Widowed
|
1(2.9)
|
|
Separated
|
1(2.9)
|
|
Divorced
|
2(5.9)
|
Disease stage 3 or 4
|
|
26(76.5)
|
Recurrence
|
Yes
|
20(58.9)
|
|
No
|
10(29.4)
|
Previous treatment
|
Surgery+chemotherapy
|
20(58.8)
|
|
Surgery+chemotherapy+targeted therapy
|
11(32.3)
|
|
Chemotherapy+ Targeted therapy
|
2(5.9)
|
|
Chemotherapy
|
1(2.9)
|
Current treatment status
|
Chemotherapy
|
11(32.3)
|
|
Targeted therapy
|
3(8.82)
|
|
Regular follow-up
|
12(35.3)
|
|
Chemotherapy+ Targeted therapy
|
8(23.5)
|
The perception of cognitive changes
Become stupid, not as smart as before
Most of participants described that they had experienced some kind of cognitive impairment. Forgetfulness was the most prominent problem, including both short and long-term memory, especially after an interruption. “Being forgetful” “I could not find things” “I was unable to remember the words/names…” were their most frequent complaints. Case 2: “After the surgery, my memory was significantly not as good as before. Once, I got lost on the way to the hospital, I was very familiar with the route, but I couldn’t remember how to change the transportation.” Case 21: “I often forgot what I came into the room for, I had to stand there and think about it for a moment. Also, it was difficult for me to remember what others had said, feeling like my mind was completely blank at once. Forgetting to close the door, turn off the gas, and unplug the socket can also happen”. However, a few patients like Case 20 emphasized that they could remember the things that they really cared about, even for the details, for example what the doctor said about the surgery or when the diagnosis was made.
In addition, some women acknowledged that their ability to comprehension, concentration and language expression had reduced a little, especially when learning new things or having social conversation. Case 22: “In conversations with colleagues who came to visit me, I usually couldn’t express myself very organized and quickly if we talk about work matters.” Case 21: “When tutoring my daughter, I have to use the mobile to do the even very simple calculation, which never happened before.”
Not noticing/ having the chance to notice any cognition change
Nine respondents said they did not feel any cognitive decline, but some of them stressed that it might be because they did not have the chance to have this feeling, due to their current comfortable life or working situation. In other word, their daily affairs were completely within their current ability, or even lower than their ability requirements. Case 4: “Now, my only life goal is to take care of myself. What I need to do is to sleep, eat and have light walk after dinner. Sometimes I play mahjong or do other easy recreational activities. So, I do not have the chance to feel the change”.
Symptom evaluation
Possible influence events of cognitive decline
Comfortable, monotonous, isolation and narrow-focused life cause the brain to "retire"
Most of the patients said that their life or work state were relatively comfortable, monotonous and closed, and their most focus was on treatment or recovery. They were well cared for or protected by family, friends or colleagues, and had little connection with outside. Therefore, it was unnecessary for them to remember/think/talk/concentrate as much as before. “Use it or lose it”, in the long run, their brains would deteriorate. Case 19 and Case 5: Generally, I mainly stay at home and take care of my grandchildren with my husband. Case 6 and Case 22: Since my illness, I have been living a three-line (hospital-home-park) life with little communicate with outside. My focus is also very narrow, mainly on treatment. Slowly, the brain would become more and more sluggish”
Surgical anesthesia and chemotherapy were blamed for the change
Eight patients speculated that their “not so smart” might be related to the use of anesthetics and chemotherapy, especially those who had undergone multiple operations. Case 16: I don't know what the exact reason is, but I've heard people say that if you use too much anesthesia, you're going to be stupid, and I've had 3 surgeries. Chemotherapy and targeted therapy may also affect me.
Fatigue, sleep disorders and anxiety were also considered to affect cognition
A few patients expressed that fatigue, anxiety or poor asleep related to treatment might contribute to their experience. Case 14: “I haven't been sleeping well since chemo, and I think it had a big impact on my cognition. I didn’t take sleeping pills as prescribed by my doctor because I was worried about side effects. Plus, I’m too young for a cancer diagnosis, and I am anxious about the treatment and prognosis, and I wish to have fertility preservation surgery.”
The impact of cognitive changes
It was not an issue for me and I didn’t particularly care
Due to their own values as well as their comfortable life, most patients clearly expressed that the slight decline of their memory or comprehension ability basically did not affect their life or work, and the symptom did not bother them at all. Case 8: “I'm a teacher and I’ve gone back to work. Although my state is not very good, my workload and pressure are not very high, now, I can handle the current work, and I'm very satisfied with the present state. So, the cognitive decline doesn't affect me at all.” Case 16 also described: “I went back to work after I finished my first cycle of chemo. My boss takes special care of me, I used to be a workaholic, but my job is much easier now.”
Self-confidence was affected a little
A few patients especially those who had some particular experiences, such as forgetting to turn off the gas, closing the door, or getting lost, were a little bothered by cognitive decline and worried that the condition would get worse and worse. Case 2 did not dare to go out alone after an experience of getting lost, including going to the hospital. Therefore, if the family member was not available, her PICC line would not get maintained on time. She was very worried if this cognitive problem would become more and more serious, and hoped that there was some way to alleviate it.
Responses to cognitive decline
Try not burden brain, actively or passively let themself "slow down" or "offload" things
Most patients put themselves in the position of being cared for, slow down their life, avoid accomplishing multiple tasks at the same time, and actively seek help from family members, which has become a "natural" adaptation of their cognitive decline. Case 15: "I have plenty of time now, I can make adjust, give myself some time and slow down." Case 5: "I try not to drain my brain or make myself too tired, I enjoy being taken care of by my family." Case 8:"It doesn't matter. I am now retired and have nothing to do. In case anything dangerous happens, I won’t leave the kitchen until I’ve finished everything.” Turning a blind eye to many things become a habit for many patients.
Personalized and repeated "note", "check" and "confirm" measures to prevent mistakes
Mobile phone "memos", shopping lists, post-it notes, alarm clocks, or writing down important things in time etc. were the most common compensation strategies for many patients. In addition, in order to prevent mistake, some patients in daily life would repeatedly check or confirm, such as whether the door and gas were turned off, whether the keys were taken away.