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Table 2 PNQ Fabry (final version – 26 items)

From: Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire

How important is it to you that the treatment …

Please tick a box for each statement

Not at all important

Slightly important

Moderately important

Fairly important

Very important

Does not apply to me

ensures you feel less tired

reduces the pain in your hands and feet

ensures you are less breathless when performing daily activities or with strenuous activities

reduces gastrointestinal disorders (nausea, pain, diarrhoea, constipation)

enables you to tolerate variations with heat and temperature better

reduces the intensity, frequency, or duration of painful attacks

enables you to continue working

enables you to cope with physical exertion better

enables you to live normally, as if you did not have Fabry disease (handicraft, housework, gardening, playing with your children, grandchildren.)

enables you to maintain your social life (work, school, family, friends.)

enables you to travel easily

enables you to have a better quality of life

ensures you are not dependent on other people on a daily basis

enables you to spend time with your family

enables you to stay fit for longer

prevents the onset of heart, kidney, or neurological problems

slows down the deterioration of your organs (kidneys, heart, brain.)

enables you to feel good every day, even on days preceding or following treatment administration

does not cause side effects or adverse effects related to the medication

ensures you do not experience pain and tiredness returning on days before medication is administered

reduces the amount of medication that you are taking

How important is it to you to have a treatment …

Please tick a box for each statement

Not at all important

Slightly important

Moderately important

Fairly important

Very important

Does not apply to me

that easily fits into your schedule and lifestyle

that you can take or administer on your own

that is easy to administer

that is administered orally (in tablet or capsule form)

with a short duration of administration