Description

Piram et al reported various activity measures to record daily by patients with an auto-inflammatory disease. One such diary entry if for patients with mevalonate kinase deficiency (MKD). The authors are from multiple institutions in Europe, Turkey and the United States.


Patient selection: mevalonate kinase deficiency (MKD)

 

Parameters:

(1) maximum body temperature in °C (for detection of fever)

(2) abdominal pain

(3) painful lymph nodes

(4) limb pain

(5) nausea and vomiting

(6) diarrhea

(7) pain relief medication

 

Parameter

Finding

Points

body temperature

< 38°C

0

 

>= 38°C

1

abdominal pain

none

0

 

mild

1

 

moderate

2

 

severe

3

painful lymph nodes

none

0

 

mild

1

 

moderate

2

 

severe

3

limb pain

none

0

 

mild

1

 

moderate

2

 

severe

3

nausea and vomiting

none

0

 

mild

1

 

moderate

2

 

severe

3

diarrhea

none

0

 

mild

1

 

moderate

2

 

severe

3

pain relief taken

no

0

 

yes

1

 

total score for daily activity =

= SUM(points for the first 6 parameters)

 

Interpretation:

minimum score: 0

maximum score: 16

The higher the score the greater the disease activity.


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