Dufresne et al reported the Ectodermal Dysplasia Burden of Disease (ED-BD) score for evaluating a patient with an ectodermal dysplasia. It is intended to be completed by the parent or guardian. The authors are from Hopital Universitaire Necker-Enfants Malades, Hopitaux de Paris-Centre, and the University of Paris.
Patient selection: an ectodermal dysplasia
Dimensions covered: impact on social life and hobbies; future prospects; impact on outdoor activities; financial burden; acceptance of the disease.
Items:
(1) give up certain leisure activities
(2) eating out is complicated
(3) eating difficulties affect social life
(4) affects where to go on vacation
(5) certain foods excluded
(6) want to quit job
(7) fear for child's future
(8) complications of the illness worry us
(9) feel lost when faced by the symptoms
(10) life has been disrupted
(11) child's future career worries us
(12) feel bad on the day after going to the hospital
(13) feel bad on the day before going to the hospital (anticipatory)
(14) getting ready each morning takes a long time
(15) part of household budget is allocated for care
(16) less money to spend due to non-reimbursed costs
(17) need to spend more attention with the child compared to other children (depending on the season)
(18) hard to get the child to accept dental care
(19) hard to see child being teased because of the illness
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Responses
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Points
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never
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0
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rarely
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1
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sometimes
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2
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often
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3
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all of the time
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4
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not applicable
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NA
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where:
• In the development phase the responses also included a "very often" category.
total score =
= SUM(points for all of the parameters)
Interpretation:
• minimum score: 0
• maximum score: 76
• The higher the score the greater the burden.
