Table 3 RUD patient characteristicsa.

From: “It seems like COVID-19 now is the only disease present on Earth”: living with a rare or undiagnosed disease during the COVID-19 pandemic

 

Self (n)

Self (%)

Patient of Family Member (n)

Patient of Family Member (%)

All (n)

All (%)

Diagnosis status

Diagnosed

187

94.4%

134

90.5%

321

92.8%

Undiagnosed

11

5.6%

14

9.5%

25

7.2%

Total patients

198

100.0%

148

100.0%

346

100.0%

Disabilityb,c

Deaf or severe hearing loss

17

7.3%

10

11.2%

27

8.4%

Blind or severe vision loss

12

5.1%

13

14.6%

25

7.7%

Serious difficulty doing errands

40

17.1%

35

39.3%

75

23.2%

Serious difficulty remembering, concentrating, or making decisions

24

10.3%

35

39.3%

59

18.3%

Serious difficulty walking or climbing stairs

45

19.2%

27

30.3%

72

22.3%

Serious difficulty dressing or bathing

21

9.0%

20

22.5%

41

12.7%

Serious difficulty communicating

5

3.5%

19

21.3%

24

7.4%

None of the above

150

64.1%

27

30.3%

177

54.8%

Selected at least one category

84

35.9%

62

69.7%

146

45.2%

Total patients

234

100.0%

89

100.0%

323

100.0%

COVID-19 risk factorsb

Diabetes

15

6.5%

2

1.4%

17

4.5%

Serious heart condition

16

6.9%

18

12.3%

34

9.0%

Immunocompromised

142

61.5%

58

39.7%

200

53.1%

Chronic kidney disease (undergoing dialysis)

3

1.3%

1

0.7%

4

1.1%

Liver disease

31

13.4%

20

13.7%

51

13.5%

Chronic lung disease or moderate to severe asthma

33

14.3%

24

16.4%

57

15.1%

Severe obesity (body mass index [BMI] of 40 or higher)

29

12.6%

8

5.5%

37

9.8%

Selected at least one category

174

75.3%

81

55.5%

255

67.6%

None of the above

57

24.7%

65

44.5%

122

32.4%

Total patients

231

100.0%

146

100.0%

377

100.0%

  1. aIncludes data for the first and second RUD patient, as reported by a family member. Detailed data were only collected on a maximum of two RUD patients per family member.
  2. bRespondents could select more than one response.
  3. cOnly asked for respondents who were patients themselves or family members of patients age 6 and above.