Of the 186 patients in our sample, the majority were female (61.83%), aged 30 years old or younger (59.06%), and married (50.54%). In terms of socioeconomic status, the majority of the patients held a high school level education degree (59.68%), did not have a full-time job (70.43%), earned less than US $ 7,919 (79.57%), held medical insurance (81.72%) and endured a severe financial burden (75.27%). Clinically, the majority of the patients were diagnosed with aplastic anemia (83.87%), suffered from the illness for more than one year (88.17%), and took care of themselves independently (43.01%).
Table 1: Descriptive analysis of socio-demographic and clinical variables (n=186)
|
Frequency
|
Percentage
|
Gender
|
|
|
Male
|
71
|
38.17
|
Female
|
115
|
61.83
|
Age
|
|
|
Below 17 years old
|
29
|
15.59
|
18-30 years old
|
79
|
42.47
|
31-40 years old
|
55
|
29.57
|
Above 41 years old
|
23
|
12.37
|
Education
|
|
|
Primary school
|
21
|
11.29
|
High school
|
111
|
59.68
|
College
|
54
|
29.03
|
Occupation
|
|
|
Full time
|
55
|
29.57
|
Half time
|
14
|
7.53
|
Unemployed
|
84
|
45.16
|
Student
|
33
|
17.74
|
Marital Status
|
|
|
Married
|
94
|
50.54
|
Single
|
84
|
45.16
|
Divorced
|
8
|
4.30
|
Medical insurance
|
|
|
Yes
|
152
|
81.72
|
No
|
34
|
18.28
|
Personal income level
|
|
|
Below US $7,919 a
|
148
|
79.57
|
US $7,919-US $15838
|
20
|
10.75
|
Above US $15838
|
18
|
9.68
|
Diagnosis
|
|
|
Aplastic anemia b
|
156
|
83.87
|
MDS\ITPc
|
27
|
14.52
|
not diagnosed
|
3
|
1.61
|
Course
|
|
|
Less than one year
|
22
|
11.83
|
One to five years
|
75
|
40.32
|
Six to ten years
|
37
|
19.89
|
Over ten years
|
52
|
27.96
|
Financial burden
|
|
|
Severe
|
140
|
75.27
|
Moderate or less
|
46
|
24.73
|
Caregiver
|
|
|
Patient
|
80
|
43.01
|
Parents or children
|
74
|
39.78
|
Spouse
|
21
|
11.29
|
Others e
|
11
|
5.91
|
a Based on a currency exchange rate of 6.31 yuan to US $1 in 2021.
b AA: CAA、SAA-I、SAA-II、AA-PNH
c the diseases similar to aplastic anemia and has been diagnosed: MDS\ITP
d Diseases similar to aplastic anemia but not diagnosed.
e Others refer to nursing home staff or other family members.
Regarding treatment preferences, half of the participants received traditional Chinese medicine as their primary treatment, followed by modern medicines like Androgens (38.71%) and Anti-thymocyte globulin, cyclosporine, and other medicines like eltrombopag and androgen (20.97%). Furthermore, 15.05% received a combination of alternative medicine and modern medicine. Patients perceived the disease might be triggered by formaldehyde and benzene poisoning (37.64%), unhealthy lifestyle (e.g., staying up late, tired, irregular work and rest schedule, and so on, 37.64%), and vague or mixed reasons (34.95%). Of the 28 other options, 27 valid answers were received. Eleven mentioned cyclosporine, six mentioned Eltrox, one mentioned having a hysterectomy to avoid excessive bleeding, and two mentioned testosterone undecanoate. Other appeared answers are thalidomide, chemotherapy, liver protection tablets, caffeic acid tablets, transplantation, etc. Most patients stated that the current treatment did not worsen their health (79.03%). 65.59% of the participants made medical treatment decisions following the physician's advice. Among the seven valid texts received by other options, four people said that the treatment method is mainly based on their opinions, one said that each person's advice would be used as a reference, and one said: "according to the amount of money." One answer indicated they would choose the primary treatment method regarding their opinions and family members.
Table 2: Primary reason for treatment preferences and locus of decision-making and the (n=186)
|
Frequency
|
Percentage
|
Patients perceived the main course of the disease
|
|
|
Formaldehyde and benzene poisoning
|
70
|
37.63
|
Stay up late, tired, irregular life
|
70
|
37.63
|
Vague or mixed reasons
|
65
|
34.95
|
Flu driven
|
41
|
22.04
|
Environmental factors (e.g., poor sanitation, ionizing radiation)
|
34
|
18.28
|
Chloramphenicol
|
17
|
9.14
|
Infection
|
17
|
9.14
|
Hepatitis driven
|
14
|
7.53
|
Pregnant driven
|
8
|
4.30
|
Genetic (Fanconi anemia)
|
4
|
2.15
|
Treatment preferences
|
|
|
Traditional Chinese Medicine
|
100
|
50.00
|
Modern medicine (including hormone-based drugs, ATG, transplantation, etc.) Androgens (testosterone undecanoate, etc.)
|
72
|
38.71
|
Diet therapy
|
22
|
11.83
|
No treatment
|
15
|
8.06
|
folk prescription b
ethnomedicine
|
3
3
|
1.61
|
Mixed therapy a
|
28
|
15.05
|
Prognosis
|
|
|
Recover
|
20
|
10.75
|
Improve
|
79
|
42.47
|
Remain stable
|
48
|
25.81
|
Worse
|
39
|
20.97
|
Locus of decision
|
|
|
Patient self
|
26
|
13.98
|
Family members
|
27
|
13.98
|
People suffering from the same disease
|
11
|
5.91%
|
Friends
|
1
|
0.54%
|
Physicians
|
122
|
65.59%
|
a. Mixed therapy refers to patients receiving both traditional Chinese and modern medicine.
b. Home remedies refer to patients themselves, their families, social networks, and communities use such as special diets, herbs, exercise, rest, baths, and massage, and, in the case of modern societies, articles such as over-the-counter drugs, vitamins supplements, humidifiers, and hot water bottles.
c. Ethnic medicine refers to it is the traditional medicine of ethnic minorities in China
The interviews also revealed that many patients seek advice from others with long-term experience with the same illness. Newly diagnosed patients often listen to the advice of those already diagnosed, and doctors and patients face limitations in their decision-making processes. The illness often changes patients' daily lives, causing pain and difficulties for patients and health professionals. Some patients may not accept their treatment plan, and the availability of varied information online can create an imbalance for patients and their families.
Table 3. Treatment effects by treatment modalities
|
Treatment effects
|
Treatment modalities
|
Complete remission (rehabilitation)
|
Partial remission (improvement)
|
Some effect
|
invalid
|
Subtotal
|
No treatment
|
0(0.00%)
|
3(20%)
|
4(26.67%)
|
8(53.33%)
|
15
|
Diet therapy
|
1(4.55%)
|
12(54.55%)
|
2(9.09%)
|
7(31.82%)
|
22
|
Folk prescription
|
0(0.00%)
|
0(0.00%)
|
0(0.00%)
|
3(100%)
|
3
|
Ethnomedicine
|
0(0.00%)
|
2(66.67%)
|
1(33.33%)
|
0(0.00%)
|
3
|
Traditional Chinese medicine (prescribed by informal hospitals) a
|
2(10%)
|
8(40%)
|
5(25%)
|
5(25%)
|
20
|
Traditional Chinese medicine (prescribed by the hospital)
|
7(8.75%)
|
36(45%)
|
17(21.25%)
|
20(25%)
|
80
|
Androgens (testosterone undecanoate, etc.)
|
5(6.94%)
|
36(50%)
|
16(22.22%)
|
15(20.83%)
|
72
|
Tpiao
|
1(25%)
|
3(75%)
|
0(0.00%)
|
0(0.00%)
|
4
|
Antithymocyte globulin (ATG) + cyclosporine + other (itropopa or androgen)
|
5(12.82%)
|
19(48.72%)
|
8(20.51%)
|
7(17.95%)
|
39
|
Transplantation: consanguinity
|
3(33.33%)
|
2(22.22%)
|
4(44.44%)
|
0(0.00%)
|
9
|
Transplantation: consanguineous haploid
|
3(37.5%)
|
2(25%)
|
2(25%)
|
1(12.5%)
|
8
|
Transplantation: cord blood
|
0(0.00%)
|
0(0.00%)
|
1(100%)
|
0(0.00%)
|
1
|
Transplantation: non-consanguineous matching
|
2(20%)
|
2(20%)
|
3(30%)
|
3(30%)
|
10
|
Others
|
3(10.71%)
|
11(39.29%)
|
8(28.57%)
|
6(21.43%)
|
28
|
Cyclosporine
|
3(23.08%)
|
4(30.77%)
|
4(30.77%)
|
2(15.38%)
|
13
|
a. There are some semi-legal or illegal practitioners in China
The Table above indicates that the majority of AA patients prefer to take traditional Chinese medicine prescribed by the hospital (80), in which more than half of them get rehabilitation or improvement (53.75%), and only a few of the patients taking formal traditional Chinese medicine think the treatment is useless (25%). Besides taking traditional Chinese medicine, the number of patients taking Androgens (testosterone undecanoate, etc.) is noteworthy (72). More than half of patients taking this method got rehabilitation of improvement (56.95%). However, compared with the patients taking traditional Chinese medicine to cure AA, fewer patients got rehabilitation via Androgens. Not all AA patients choose to take formal medical treatment. Some still live with the illness without taking any therapy or just treating AA via diet therapy. None of those who never took treatment recovered, while there is one patient who just took diet therapy to cure AA recovered, and the number of patients taking diet therapy improved (12) is much more than those taking no therapy.
The sources of knowledge for aplastic anemia patients in their medical decision-making process include doctor's advice, self-perception, input from relatives and friends, internet information, and advice from other patients with the same condition. This process is not set in stone and can change as the medical treatment progresses. The author observed that due to the chronic nature of the disease, decisions about where and from whom to seek treatment are intertwined and can change over time as patients adjust their decision-making ability.