Index

Questionnaire on cumulative life course impairment in skin diseases – DermCLCI-r

The following questions will help us to understand

a) what negative impact the skin disease has had on you in the course of your life,

b) whether these impacts still persist and

c) whether they had a life-changing effect on you.

Note: Life-changing in this context means that your life would have been different in these areas without the skin disease.

Please mark your answer (3 answers per line) for each of the following statements:

Since the onset of the first symptoms of the disease, I have found the following to be burdensome in the course of my disease:

If burdensome:

ongoing

life-changing

not at all

somewhat

quite

very

yes

...limitations of physical performance

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...effort with the treatment of the disease

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...insufficient care by the attending physicians

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...other diseases

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...impairments in professional life/education

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...negative financial impacts

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...nervousness, anxiety or tenseness

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...not being able to stop or control worries

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...feeling stressed by the disease

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...little interest or pleasure in my activities

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...depression, melancholy or hopelessness

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...thoughts of no longer wanting to live

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

…problems in my family

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...problems in (previous) intimate partner relationships

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

…problems in other social relations (friends, colleagues)

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

…impairments in sex life

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...in terms of fulfilling of my desire to have children

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...restrictions in leisure activities

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

…impairments regarding choice of clothing

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...feelings of shame

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...prejudices of others

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...nutritional disadvantages

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...increased use of tobacco, alcohol, drugs, or the internet

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...sleep disorders

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...impairments in the quality of life

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

...Other

Not at all

Somewhat

Quite

Very

If burdensome:

ongoing

Yes

life-changing

Yes

not at all

somewhat

moderately

quite

very

I have come to terms with my disease and its associated impairments.

Not at all

Somewhat

moderately

Quite

Very

Through coping strategies or avoidance behaviors, I have learned to deal better with the disease.

Not at all

Somewhat

moderately

Quite

Very

30 How old were you when your first disease symptoms occurred?

Please mark how strongly you have felt burdened by your disease in the respective years of your life (from the onset of your disease to your current age).

Average burden of the disease on your life:

At the age of:

no symptoms yet

not at all

somewhat

moderate

quite

very

<10 years

no symptoms yet

not at all

somewhat

moderate

quite

very

11-20 years

no symptoms yet

not at all

somewhat

moderate

quite

very

21-30 years

no symptoms yet

not at all

somewhat

moderate

quite

very

31-40 years

no symptoms yet

not at all

somewhat

moderate

quite

very

41-50 years

no symptoms yet

not at all

somewhat

moderate

quite

very

51-60 years

no symptoms yet

not at all

somewhat

moderate

quite

very

61-70 years

no symptoms yet

not at all

somewhat

moderate

quite

very

71-80 years

no symptoms yet

not at all

somewhat

moderate

quite

very

81-90 years

no symptoms yet

not at all

somewhat

moderate

quite

very

>90 years

no symptoms yet

not at all

somewhat

moderate

quite

very

Thank you very much for your cooperation!

Questionnaire on cumulative impairments in skin diseases – DermCLCI-r, Augustin 2022 Version: UK-English for use in UK. 1.0

Page 1 Title - en

Page 1 Description - en

Questionnaire on cumulative life course impairment in skin diseases – DermCLCI-r

Please mark your answer (3 answers per line) for each of the following statements:

Please mark how strongly you have felt burdened by your disease in the respective years of your life (from the onset of your disease to your current age).

Average burden of the disease on your life:

Your eDermCLCI-r sumscore is:

0 - 5 = no cumulative life course impairment

6 - 20 = minor cumulative life course impairment

21 - 40 = moderate cumulative life course impairment

41 - 75 = strong cumulative life course impairment

Your proportion of the answers „quite“ and „very“ is:

Sumscore of items with ongoing burden

0 - 1 = no impairment

2 - 5 = minor impairment

6 - 10 = moderate impairment

Sumscore of items with lifechanging burden

0 = no cumulative life course impairment

1 - 3 = minor cumulative life course impairment

4 - 5 = moderate cumulative life course impairment

>5 = strong cumulative life course impairment