3.1 Demographic characteristics of participants
There were 231 adult MG patients randomly recruited for this questionnaire survey study. Among them, 17 participants were excluded because of incomplete survey response or mismatch of age. Thus, the data of 214 adult MG patients was finally enrolled in the analysis, consisting of 84 (84/214, 39.25%) males and 130 (130/214, 60.75%) females and the male: female ratio was 1:1.5. The demographic information was shown in Table 1.
Table 1
Demographic characteristics of participants
Categories | Numbers |
Gender |
Male | 84 (39.25%) |
Female | 130 (60.75%) |
Age |
18–35 years | 99 (46.26%) |
36–50 years | 59 (27.57%) |
>50 years | 56 (26.17%) |
Marital status |
Single | 46 (21.50%) |
Married | 159 (74.30%) |
Divorced | 6 (2.80%) |
Widowed | 3 (1.40%) |
Education level |
No HS diploma | 72 (33.64%) |
HS, no college | 59 (27.57%) |
Some college, no degree | 38 (17.76%) |
Bachelor degree or above | 45 (21.03%) |
HS, high school. |
3.2 Cognition Of Covid-19 Outbreak In Adult Mg Patients
The cognition of COVID-19 outbreak in adult MG patients was mainly evaluated by two questions. The first question was whether did them know about the route of infection. We set four degrees of self-reported familiarity with the knowledge of the ways for coronavirus transmission (very familiar, somewhat familiar, not very familiar, and not familiar at all). 112(112/214, 52.34%) participants reported they were very familiar with the knowledge of the ways for coronavirus transmission. 101(101/214, 47.20%) participants reported they were somewhat familiar with the knowledge of the ways for coronavirus transmission. Only 1(1/214, 0.46%) participant was not very familiar with the knowledge of the route of infection. No participant was not familiar with it at all. And the second question was how concerned they were about the public news of COVID-19. We also set four levels of the attention for the public news of COVID-19 (very concerned, somewhat generally concerned, not very concerned, and not concerned at all). 167(167/214, 78.04%) participants reported they were very concerned about the public news of COVID-19. 44(44/214, 20.56%) participants reported they were somewhat concerned about the public news of COVID-19. 3(3/214, 1.40%) participants were not very concerned about the public news of COVID-19. Due to the popularity of network, there was no participant not concerned about the news of COVID-19.
3.3 The psychological impact of COVID-19 outbreak on adult MG patients
To examine the psychological impact of COVID-19 outbreak on adult MG patients, we ask the participants whether they were scared of it or not. There were 106(106/214, 49.53%) participants reported they had the fear of COVID-19 outbreak at different levels. 4 (4/214, 1.87%) participants reported they were very scared of COVID-19 outbreak. 29(29/214, 13.55%) participants were somewhat scared. 73(73/214, 34.11%) participants were not very scared. While, 108(108/214, 50.47%) participants reported that they were not scared at all. In order to investigate the factors affecting this kind of psychological status of the adult MG patients during the COVID-19 outbreak, the Kruskal-Wallis test was conducted. The results were shown in Table 2. Patients with different gender had a significant difference in the psychological status related to COVID-19 outbreak (p = 0.009). Female patients presented a higher level of the fear to the COVID-19 outbreak compared to the male patients. Other features like age, educational levels, married status and self-reported disease severity had no significant difference in the psychological status (p > 0.05).
Table 2
The psychological status related to COVID-19 outbreak in different subgroups
Subgroups | The degree of fear to COVID-19 outbreak | P value |
Very scared | Somewhat scared | Not very scared | Not scared at all |
Gender |
Male | 0 | 10 | 22 | 52 | 0.009 |
Female | 4 | 19 | 51 | 56 |
Age |
18–35 years | 1 | 18 | 29 | 51 | 0.662 |
36–50 years | 1 | 6 | 20 | 32 |
> 50 years | 2 | 5 | 24 | 25 |
Educational levels |
No HS diploma | 2 | 9 | 24 | 37 | 0.851 |
HS, no college | 1 | 7 | 24 | 27 |
Some college, no degree | 1 | 5 | 14 | 18 |
Bachelor degree or above | 0 | 8 | 11 | 26 |
Married status |
Single | 1 | 8 | 8 | 29 | 0.533 |
Married | 3 | 20 | 62 | 74 |
Divorced | 0 | 1 | 3 | 5 |
Widowed | 0 | 0 | 1 | 2 |
Self-reported disease severity |
Improved | 1 | 10 | 27 | 40 | 0.792 |
Unchanged | 3 | 16 | 41 | 62 |
Worsen | 0 | 3 | 5 | 6 |
HS, high school. |
Table 3
MGQOL15r scores in different subgroups
Subgroups | Numbers | MG-QOL15r `x ± s | Test statistic | P value |
Gender |
Male | 84 (39.25%) | 7.69 ± 6.22 | 0.589 | 0.557 |
Female | 130 (60.75%) | 7.18 ± 6.23 |
Age |
18–35 years | 99 (46.26%) | 6.70 ± 6.40 | 1.115 | 0.330 |
36–50 years | 59 (27.57%) | 8.03 ± 6.03 |
>50 years | 56 (26.17%) | 7.89 ± 6.08 |
Educational levels |
No HS diploma | 72 (33.64%) | 7.31 ± 5.68 | 6.483 | 0.090 |
HS, no college | 59 (27.57%) | 9.12 ± 7.37 |
Some college, no degree | 38 (17.76%) | 7.21 ± 6.67 |
Bachelor degree or above | 45 (21.03%) | 5.36 ± 4.22 |
Marital status |
Single | 46 (21.50%) | 5.59 ± 4.87 | 4.203 | 0.240 |
Married | 159 (74.30%) | 7.91 ± 6.47 |
Divorced | 6 (2.80%) | 6.50 ± 3.62 |
Widowed | 3 (1.40%) | 8.33 ± 11.93 |
Psychological status |
Not scared at all | 108 (50.47%) | 6.26 ± 5.83 | 3.075 | 0.029 |
Not very scared | 73 (34.11%) | 9.05 ± 6.40 |
Somewhat scared | 29 (13.55%) | 7.17 ± 6.47 |
Very scared | 4 (1.87%) | 8.05 ± 6.61 |
Self-reported disease severity |
Improved | 78 (36.45%) | 5.76 ± 5.48 | 12.684 | 0.002 |
Unchanged | 122 (57.01%) | 7.78 ± 5.91 |
Worsen | 14 (6.54%) | 12.93 ± 6.22 |
The need for online consult |
Not need at all | 7 (3.27%) | 9.43 ± 4.79 | 2.406 | 0.068 |
Not very need | 14 (6.55%) | 4.21 ± 5.70 |
Somewhat need | 98 (45.79%) | 6.83 ± 5.78 |
Very need | 95 (44.39%) | 8.26 ± 6.65 |
HS, high school. |
We further investigated the reasons why they were scared of COVID-19 outbreak among these 106 participants. 66(66/106, 62.26%) participants feared of COVID-19 because there are still no specific treatments. 75 (75/106, 70.75%) participants were scared due to the strong infectivity of COVID-19. 46(46/106, 43.40%) participants were afraid of COVID-19 because of the mortality of this novel coronavirus. 71(71/106, 66.98%) participants feared of COVID-19 because humans are widely susceptible to infection with COVID-19. Besides, the extensive media coverage also caused a certain degree of panic.
We also investigated the sleep quality of adult MG patients during the COVID-19 outbreak. 154(154/214, 71.96%) participants reported their sleep quality was not impacted. 42(42/214, 19.63%) participants reported their sleep quality was worse than before. 15(15/214, 7.01%) participants reported their sleep quality was much worse than before. 3(3/214, 1.40%) participants reported their sleep quality was ever better than before.
There were 192(192/214, 89.72%) participants reported their daily life was significantly affected by COVID-19 outbreak. 175(175/214, 81.87%) participants reported it was inconvenience for them to go out and their communication with others was restricted. 55(55/214, 25.70%) participants reported their income decreased. 77(77/214, 35.98%) participants reported they were stressed out and extremely afraid of infection with COVID-19.
3.4 The impact of COVID-19 outbreak on severity of MG
During the COVID-19 outbreak, 78(78/214, 36.45%) patients thought they got an improvement. 122(122/214, 57.01%) patients reported they felt no change. 14(14/214, 6.54%) patients reported their condition got worse. Among these 14 patients, 4 patients reduced the drug dose or stopped taking drugs. 3 patients reported they were overworked during these days. 4 patients reported they had a cold or diarrhea. 5 patients thought their emotion response to the COVID-19 outbreak like anxiety, fear and depression posed a negative impact on the severity of MG. 1 patient reported a case of a miscarriage. And 4 patients did not find any obvious factors response for the deterioration.
The mean score of MGQOL15r was 7.38 ± 6.22, including the average MGQOL15r score of 7.69 ± 6.22 for the 84 male patients, and the 130 female patients had an average MGQOL15r of 7.18 ± 6.23. By Independent Sample T test, it suggested that there was no significant difference between MGQOL15r score and gender (t = 0.589, p = 0.557). By one-way ANOVA test, patients with different age had no significant difference in MGQOL15r score (F = 1.115, p = 0.330).
To examine whether there was any association between MGQOL15r score and other features like educational levels, married status and psychological states, one-way ANOVA test and Kruskal-Wallis test were conducted. The results suggested that patients with different educational levels had no significant difference in MGQOL15r score (p = 0.090). And there was no significant difference between MGQOL15r and married status (p = 0.240). Patients in different psychological status had a significant difference in MGQOL15r score (F = 3.075, p = 0.029). Those who were not scared of COVID-19 outbreak at all tended to have a lower MGQOL15r score. Patients with different self-reported disease severity had a significant difference in MGQOL15r score (p = 0.002). Those who thought their condition was worse tended to have a higher MGQOL15r score.
3.5 The Association Of Covid-19 Outbreak And Mg Therapy
There were 85(85/214, 39.72%) participants thought MG therapy was related to the outbreak of COVID-19. The relevant reasons were as follows: 1) 69(69/85, 81.18%) participants thought they could not go to the hospital as usual. 2) 28(28/85, 32.94%) participants thought their outdoor activities were limited and this might lower the immune system function. 3) 27(27/85, 31.76%) participants reported their emotion was significantly affected, it was easier for them to become anxious or depressed. 4) 26(26/85, 30.59%) participants thought they were likely to might get an infection such upper respiratory infection or diarrhea because of long-term immunosuppressive therapy. 5) 39(39/85, 45.88%) participants thought their condition related to MG would also get worse once they get upper respiratory infection. 6) 13(13/85, 15.29%) participants reported they had worse quality of diet and sleep since the outbreak of COVID-19 which might cause a negative impact on their disease severity of MG.
3.6 The impact of COVID-19 outbreak on MG therapy and the related behaviors
207(207/214, 96.73%) participants realized they should take immunosuppressive drugs every day even during the COVID-19 outbreak. And 189(189/214, 88.32%) participants reported they still had medicines at home.
To investigate the impact of COVID-19 epidemic on the MG therapy and the related behaviors, we supposed that the medicines at home were running out. 154(154/214, 71.96%) patients reported they would come to nearby pharmacy to buy drugs according to the former therapeutic plan. 23(23/214, 10.75%) patients would reduce the drug does in order to keep taking drugs every day. 22(22/214, 10.28%) patients would take drugs as usual and then stop immediately. 15(15/214, 7.01%) patients tended to choose other choices but not reported in detail.
We supposed that their body conditions were getting worse to investigate their behaviors in such condition. 18(18/214, 8.41%) patients would increase the drug does and keep staying at home. 79(79/214,36.92%) patients would take drugs according to the former therapeutic plan. 87(87/214, 40.65%) patients would come to the tertiary hospitals as much as possible. 25(25/214, 11.68%) patients would come to the nearby hospital or clinic which was much smaller than a tertiary hospital. 5(5/214, 2.34%) patients tended to choose other choices but not reported in detail.
If the Outpatient Department of the tertiary hospitals opened, there were 139(139/214,64.95%) patients would go to there looking for help for specialist physicians without hesitation. But 75(75/214, 35.05%) patients still would not go to the tertiary hospital. The factors affected their decisions included social isolation, fear of infection with COVID-19 and the constriction of public traffic during the COVID-19 epidemic.
3.7 The Factors Affecting The Need For Online Consult
With the development of internet, it is possible for adult MG patients to get online consult to specialist physicians. There were 207(207/214, 96.73%) patients hoped the specialist physicians to provide online consult. But only 179(179/214, 83.64%) patients would choose to contact specialist physicians on line. In order to distinguish those really in need and offer professional advice in time, we set four degree to evaluate the need for online consult (very need, somewhat need, not very need, not need at all), and then investigate the factors associated to it.
By one-way ANOVA test, it suggested that there was no significant difference between MGQOL15r score and the need for online consult (F = 2.406, p = 0.068). The results of Kruskal-Wallis tests were shown in Table 4. Patients with different age, gender, educational levels, married status, psychological status and self-reported disease severity presented no significant difference in the degree of need for online consult (p > 0.05).
Table 4
The need for online consult in different subgroups
Subgroups | The degree of need for online consult | P value |
Very need | Somewhat need | Not very need | Not need at all |
Gender |
Male | 37 | 39 | 6 | 2 | 0.987 |
Female | 38 | 59 | 8 | 5 |
Age |
18–35 years | 40 | 49 | 7 | 3 | 0.057 |
36–50 years | 23 | 28 | 4 | 4 |
> 50 years | 32 | 21 | 3 | 0 |
Educational levels |
No HS diploma | 36 | 30 | 3 | 3 | 0.584 |
HS, no college | 22 | 31 | 5 | 1 |
Some college, no degree | 17 | 15 | 4 | 2 |
Bachelor degree or above | 20 | 22 | 2 | 1 |
Married status |
Single | 16 | 25 | 3 | 2 | 0.446 |
Married | 76 | 68 | 10 | 5 |
Divorced | 2 | 4 | 0 | 0 |
Widowed | 1 | 1 | 1 | 0 |
Psychological status |
Not scared at all | 42 | 56 | 7 | 3 | 0.084 |
Not very scared | 39 | 29 | 4 | 1 |
Somewhat scared | 11 | 12 | 3 | 3 |
Very scared | 3 | 1 | 0 | 0 |
Self-reported disease severity |
Improved | 34 | 35 | 6 | 3 | 0.087 |
Unchanged | 51 | 59 | 8 | 4 |
Worsen | 10 | 4 | 0 | 0 |
HS, high school. |