POLICY AND CONSENT MANIFESTATIONTO THE PERSONAL DATA TREATMENTto take part to the observational research Quality

 

Dear User,

in accordance  with article 13 of the UE Regulation n. 679/2016 (also called GDPR) by means of this we provide you with information regarding the procedures and the aims of processing your data collected through our registry  LGMD 2C-2D-2E in the Quality Project, whose constitution is promoted and managed by GFB OdV – Gruppo Familiari Beta-Sarcoglicanopatie.   

The GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE  Odv and the Stem Cell Laboratory, directed by doctor Yvan Torrente, have promoted the described study, each one for their own area of competence and, in accordance with liabilities under standards of good clinical practice (D.L. 211/2003), will process your Personal Data, especially the ones concerning Your state of  health, Your medical history and other confidential data on your life, solely for the registry and Quality Project implementation.

 

We will ask you for the information we need through the completion of an online questionnaire, your adherence to observational research implies the processing of your data as described above.

The purpose of data processing is therefore the implementation of the clinical study and the legal basis that makes it legitimate is the execution of the contract between the parties for the conduct of clinical research activities in the field of health care and/ or therapy on beta-sarcoglycanopathies and other limb girdle muscular dystrophies.

The registry will collect different clinical data relating to your pathology and its course. The registry also contains information on collected biological samples, especially on the performed muscle biopsies, type, collecting date and immunohistochemistry features.

 

We will also ask your consent to reuse the data provided with the completion of the questionnaire, for other studies or research on these very rare forms of muscular dystrophy, such as:

  • Therapy or prevention programmes (trial);

  • Genetic disease diagnosis (diagnostic test);

  • Diagnosis of pathologies described in the rare disease national registry;

  • Prenatal diagnosis;

  • Genetic screening;

  • Genetic pathology prevention in high-risk populations;

  • Prevention of pathologies described in the rare disease national and/or regional registry;

  • Studies on human genome.

 

For transparency sake, we would like to point out that the Personal Data, as the name, date of birth, sex and place of residence are collected and stored separately from the clinical data stored in the registry or from the quality of life data collected in the Quality Project.

These data are never expressed in the registry/Quality Project but they are replaced by alphanumerical pseudonysms automatically created so that it can’t be traced back to the patient identity. With the exception for people involved in the study realization (below mentioned), no user of the registry/Quality Project will be able to link the patient identity to the data collected and recorded in the registry/project.

 

The data stored in the register will still be protected by an encryption system. The identification will be authorized only to the administrator of the LGMD 2C-2D-2E registry and of the Quality project and to the subjects in charge to deal directly with the user according to the processing needs.

Your data  could be made accessible to the following recipients:

  • You, anytime you wish, you wiil be able to have access to information regarding you that are in the registry /Quality project by contacting the physician who has included you in the registry /Quality project. In addition, your physician might explain to you the meaning of hte recorded data, in case of any doubt.

  • Your physician and his team will have access to your clinical data.

  • Physicians of the Centro Dino Ferrari: data stored in the registry could be accessible to the researchers and doctors for scientific studies. Data that are possibly exported, will receive a new pseudonym and they couldn’t be linked to their identity.

  • Researchers (only after an accurate assessment of the access request from the scientific registry of LGMD 2C-2D-2E/ Quality Project): if researchers from other institutes ask for a consultation of the LGMD 2C-2D-2E registry/ Quality Project in order to find patients suitable for specific clinical studies,  the registry/ Quality Project scientific committee will decide whether to allow or not the data access and their transmission. Here too, the data possibly transmitted will be anonymized again and so not traceable to the patient identity. Furthermore, your data could be transmitted anonymously to companies or third parties (Sponsors/Clinical studies Promoters or external companies that act on their behalf also in non-European Union Countries, even if in joint projects with private individuals, public entities (a local, national and international level) research bodies or companies, associations, foundations, bodies, or non-profit associative bodies, clinical laboratories, National Health Service bodies, physicians and medical staff, pharmaceutical companies) that carry out a research activity that requires the registry access.

  • Administrator: the data collected in the registry/Quality project will be visible to the administrator of the computing resources used for the registry. This will happen only if it is necessary to complete a task and i twill be recorded. 

  • Public entities: for the fulfillment of legal obligations, and to the judicial authority, in case of formal request. The  Ethics Committee and the Italian and foreign  Health Authorities can see your data, collected in your original medical documents, solely in order to check the Study procedures and the collected data correctness and accuracy, by taking all the necessary precautions to guarantee your confidentiality identity.

 

All authorised parties are obliged to keep information confidential. All data publication will be anonymous.


 

We also remind you that you’re the right to ask for  your personal data access,  their correction and deletion from research activities or limitation to processing.

You also have the right to revoke, at any time, the express consent and to end the research activities on your data, in the Quality study or in further ones, in which case no other data concerning you will be collected, without prejudice to the use of any data already collected to determine, without altering, the results of the research.

You have the right to  lodge a complaint to the competent Authority referred to in article  77 of the Regulation.

 

You may exercise the rights above mentioned and the right to withdraw the consent by writing GFB Association Odv, at the legal protempore representative, Mrs. VOLA BEATRICE, President of the association,  to the e-mail address volbeat@libero.it; address: Via Civasca 112,  23018 Talamona SO,  www.gfbonlus.it   

 

CONSENT EXPRESSION

 

Having read the above mentioned information and having  completely understood it, by subscription to the present I agree with my personal data processing for the purposes of research within the limits and in the manner indicated in the information for the conduct of the Quality study and further observational research on beta-sarcoglycanopathies and limb girdle muscular  dystrophies

Subject's name and surname *
Date *

I, the undersigned, confirm

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MOTION LIMITATION EVALUATION QUESTIONNAIRE

INSTRUCTIONS FOR THE ACTIVLIM AND THE ABILHAND QUESTIONNAIRE

 

For a child evaluation (between 6 and 15 years-old):

The parents fill in the questionnaire by estimating their child’s difficulty or ease in performing each activity.

 

For an adult evaluation (more than 16 years-old):

The patient fills in himself the questionnaire by estimating their own difficulty or ease in performing each activity.

 

The activities should be done:

• Without technical or human help (even if the patient actually uses help in daily life)

• Irrespective the limb(s) actually used to achieve the activity

• Whatever the strategy used (any compensation is allowed)

 

Three responses are presented. These assess the perception of the difficulty/ease depending on whether the activity is “impossible”, “difficult” or “easy”. Activities not attempted in the last 3 months are not scored and entered as missing responses (to tick the question mark).

So, for any activity, the four potential answers are:

Impossible: The patient is unable to perform the activity without using any other help.

Difficult: The patient is able to perform the activity without any help but experiences some

difficulty.

Easy: The patient is able to perform the activity without any help and experiences no

difficulty.

Question mark: The patient cannot estimate the difficulty of the activity because he has never done the activity.

 

Watch out!! If the activity was never attempted because it is impossible, then it must be scored “impossible” rather than “question mark”.

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Name and surname *
Age *
Email *
Number *
+39
Search
    Address *
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    ACTIVLIM - Activity Limitations Measure

    1 - Putting on a T-Shirt *
    2 - Washing one's upper body *
    3 - Dressing one's lower body *
    4 - Taking a shower *
    5 - Sitting on the toilet *
    6 - Taking a bath *
    7 - Walking downstairs *
    8 - Stepping out of a bath tub *
    9 - Opening a door *
    10 - Walking outdoors on level ground *
    11 - Washing one's face *
    12 - Hanging up a jacket on a handstand *
    13 - Wiping one's upper body *
    14 - Walking upstairs *

    To evaluate an adult patient (age 16-80), please answer to the following question.

    15 - Carrying a heavy load *
    16 - Getting into a car *
    17 - Standing for a long time (+10 min) *
    18 - Walking more than a kilometer *

    To evaluate a child patient (age 6-15), please answer to the following question.

    19 - Closing a door *
    20 - Hopping on one foot *
    21 - Putting on a backpack *
    22 - Running *
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    ABILHAND – Manual Ability Measure

    1 - Wiping one's hand *
    2 - Spreading butter on a slice of bread *
    3 - Turning a key in a keyhole *
    4 - Fastening a snap (jacket, bag...) *
    5 - Squeezing toothpaste onto a toothbrush *
    6 - Filling glass with water *
    7 - Opening a bread box *
    8 - Turning on a tap *
    9 - Washing one's hands *
    10 - Opening a toothpaste tube *
    11 - Opening a pack of biscuits *
    12 - Buttoning up a shirt *
    13 - Turning off a tap *
    14 - Fastening zipper of a jacket *

    To evaluate an adult patient (age 16-80), please answer the following question

    15 - Taking the cap off a bottle *
    16 - Cutting one's nails *
    17 - Inserting a key in a keyhole *
    18 - Counting banknotes *

    To evaluate a child patient (age 6-15), please answer the following question

    19 - Opening a pack of chips *
    20 - Sharpening a pencil *
    21 - Dealing cards *
    22 - Unwrapping a chocolate bar *
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    EK SCALE

    1 - Ability to use wheelchair - How do you get around indoors and outdoors?*
    Able to use a manual wheelchair on flat ground, 10m < 1 minute
    Able to use a manual wheelchair on flat ground, 10m > 1 minute
    Unable to use manual wheelchair, requires power wheelchair
    Uses power wheelchair, but occasionally has difficulty steering
    2 - Ability to transfer from wheelchair*
    Able to transfer from wheelchair without help
    Able to transfer indipendently from wheelchair, with use of aid
    Needs assistance to transfer with or without additional aids (hoits, easy glide)
    Needs to be lifted with support of head when transferring from wheelchair
    3 - Ability to stand*
    Able to stand with knees supported
    Able to stand with knees and hips supported, as when using standing aids
    Able to stand with full body support
    Unable to be stood
    4 - Ability to balance wheelchair*
    Able to push himself upright from complete forward flexion by pushing up with hands
    Able to move the upper part of the body >= 30 in all directions from the upright position, but cannot push himself upright as above
    Able to move the upper part of the body < 30 from one side to the other
    Unable to change position of the upper part of the body, cannot sit without total support of the trunk and head
    5 - Ability to move the arms - Can you move your fingers, hands and arms against gravity?*
    Able to raise the arms above the head with or without compensatory movements
    Unable to lift the arms above the head, but able to raise the forearms against gravity, ie. hand to mouth with / without elbow support
    Unable to lift the forearms against gravity, but able to use the hands against gravity when forearm is supported
    Unable to move the hands against gravity but able to use the fingers
    6 - Ability to use the hands and arms for eating - Can you describe how you eat and drink?*
    Able to eat and drink without elbow support
    Eats of drinks with support at elbow
    Eats and drinks with elbow support; with reinforcement of the opposite hand +or - aids
    Has to be fed
    I have the meat cut and then eat by myself. I fill the glass with 100ml and not with 250ml and take it to my mouth by myself
    7 - Ability to turn in bed - how do you turn in bed during the night?*
    Able to turn himself in bed with bedclothes
    I can move on the sofa, but not in the bed
    Unable to turn himself in bed. Has to be turned 0 - 3 times during the night
    Unable to turn himself in bed. Has to be turned >= 4 times during the night
    I turn left alone, right no
    8 - Ability to cough - How do you cough when you have to?*
    Able to cough effectively
    Has difficulty to cough and sometimes needs manual reinforcement. Able to clear throat
    Always needs help with coughing. Only possibile to cough in certain positions and with manual reinforcement,air-stacking etc.
    Unable to cough, Needs suction and/or hyperventilation techniques or IPPB in order to keep airways clear
    9 - Ability to speak - Can you speak so that what you say can be understood if you sit at the back of a large room?*
    Powerful speech. Able to sing and speak loudly
    Speaks normally, but cannot raise his voice
    Speaks with quiet voice and needs a breath after 3 to 5 words
    Speech is difficult to understand except to close relatives
    10 - Physical well-being - This relates to respiratory insufficiency only (see manual) Use the categories as questions*
    No complaints, feels good
    Easily tires. Has difficulty resting in a chair or in bed
    Has loss of weight, loss of appetite, Scared of falling aspleet at night, sleeps badly
    Experience additional symptoms to score 2: change of mood, stomac ache, palpitations, perspiring
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    Clinical Questionnaire

    Name and surname

    Personal Data

    Date of birth:
    Weight: kg
    Altezza: cm
    Compilation date
    Familiarity: Indicate whether there are other cases in the family and degree of kinship
    Are there any healthy carriers of this pathology in your family?
    Are the parents blood relatives and with which degrees of kinship?

    ONSET

    1 - At what age did you notice the first signs and symptoms of the disease?
    2 - Which were the first signs and symptoms of the disease that you noticed?
    3 - Which muscle groups did they appear?
    4 - Are the lower limbs involved?
    5 - Are the upper limbs involved?
    6 - Are the face mimic muscles involved?
    7 - Are the ocular muscles involved?
    8 - Did you notice any chance in the muscle volume (dicrease/increase of the muscle volume) in anymuscle groups?
    9 - If yes, which one? At what age?
    10 - Age of the diagnosis:
    11 - Age of the loss of walking ability
    12 - Aids use: walker, wheelchair and other
    13 - Age of autonomy and hands use loss:
    14 - Presence of pain: Indicate age of pain onset and place (calves, lower limbs, upper limbs, hands,back, neck or other places)

    Current Situation

    1 - Which one of these descriptions is the most likely for you
    No problem
    I walk without any problems, some difficulties in running
    Waddling gait, lower limbs weakness
    I show muscle weakness, I climb the stairs by using a stick
    Difficulty in rising from the ground, that is a sign of positive Gower’s
    Impossible to rise from the ground.
    Impossible to climb the stairs
    Impossible to get out of the chair
    Impossible to walk on your own
    Impossible to eat without any help, inability to sit without any aid
    Do you often fall down? If yes, please say how often a week or a month.
    Have you got any difficulties in swallowing?
    Do you climb the stairs by using the banister?
    Do you walk with a stick?
    2 - How often do you fall down?
    3 - Do you have any other disorders that should be mentioned?

    Evolution

     Do you remember at what age did you start to have the following signs and symptoms? 

    1 - I walk without any problems, some difficulties in running
    2 - Waddling gait, lower limbs weakness
    3 - I show muscle weakness, I climb the stairs by using a stick
    4 - Difficulty in rising from the ground, that is a sign of positive Gower's
    5 - Impossible to climb the stairs
    6 - Impossible to get out of the chair
    7 - Impossible to walk on your own
    8 - Impossible to eat without any help, inability to sit without any aid
    9 - If woman, did you notice a symptom worsening following pregnancies?
    10 - Has your pathology had a progressive evolution or have you got sudden worsening? If yes, can you link them to a specific cause?
    11 - Before the disease onset, did you practise any sports?
    12 - If yes, which one?
    13 - How long?
    14 - At What Level?

    Comments on other diseases

    1 - Have you had a heart exam recently?
    2 - Do you have a cardiomyopathy?
    3 - What age were you diagnosed with cardiomyopathy? What age were you diagnosed with cardiomyopathy?
    4 - Have you done an ECG and/or an echocardiogram recently?
    5 - Have you got heart conduction disorders? Do you remember when you started showing this disorder? 
    6 - Have you had a recently?
    7 - Have you got respiratory problems? Do you remember when you started showing this disorder?
    8 - Have you done Emogas reently?
    9 - Have you done the polysomnography recently?
    10 - Have you had a physiatric visit recently?
    11 - Do you suffer from scoliosis?
    12 - Do you suffer from kyphosis?
    13 - Do you have any other back problems?
    14 - Diet: please say if high-calories or low-calories and how many times a week you eat meat, whetheryou are vegetarian or whether you eat soy regularly.
    15 - Does your disease has a fluttering movement? If yes, can you link these variations to a specificreason?
    16 - Have you undergone any surgeries? If yes, which ones?
    17 - Have you got any cognitive deficits? If yes, which ones?

    Diagnostic Data

    1 - Which clinical center has made your diagnosis?
    2 - Which doctor has run your diagnosis?
    3 - Genetic diagnosis: Which is the mutation reported in your diagnosis? If yes attach your diagnosis
    Please, attach your report *
    Drag & Drop Files Here Browse Files
    4 - Which clinical center has made your diagnosis?

    Clinical investigations

    5 - In which clinical center are you being treated?
    6 - Heart investigations: ECG, Echocardiogram
    Yes
    No
    Please, attach your report *
    Drag & Drop Files Here Browse Files
    7 - Respiratory investigations: spirometry, polysomnography and sleep apnea test, thorax x-ray.
    Yes
    No
    Please, attach your report *
    Drag & Drop Files Here Browse Files
    8 - Pneumonia episodes (at what age and how many)
    9 - Infectious episodes of the respiratory tract (at what age and how many)
    10 - Pneumonia ab ingestis (at what age and how many)
    11 - Food investigations: recommended diets.
    Yes
    No
    Please, attach your report *
    Drag & Drop Files Here Browse Files
    12 - Dysphagia (at what age, for liquids or for solids or both)
    13 - PEG introduction
    Yes
    No
    Please, attach your report *
    Drag & Drop Files Here Browse Files
    14 - Movements investigations: neuromuscular test by the means of MRC scale, 6MWT, MFM, NorthStar scale or other functional scales
    Yes
    No
    Please, attach your report *
    Drag & Drop Files Here Browse Files

    Therapies

    15 - Surgical treatments: Achilles tendon elongation, back surgery
    Yes
    No
    Please, attach your report *
    Drag & Drop Files Here Browse Files
    16 - Physiotherapy: Are you being treated with muscle physiotherapy? How often?
    17 - Hydrotherapy: From what age, how often, mode
    18 - Drug Therapies: Do you take cortisone? Since when? Which drug?
    19 - If you’ve taken it in the past, please say when you started your treatment and when you finished. Which drug? With what dosage?

    AIDS

    1 - Please say which aids you have:
    AUSILI
    Walker
    Tarsian tibio tutors
    Corset
    Manual wheelchair
    Power wheelchair
    Car lifter
    Car suitable for disabled
    Home lifter
    Stairlift
    Lift
    Cough machine
    CPAP
    BPAP
    Others

    Participation in Clinical Trials

    1 - Have you ever taken part to experimental clical trials?
    2 - Which ones and the reference Center
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    PedsQL

    Duchenne Muscular Dystrophy Module

    Insert Your Age and click "Next" to be redirected to the right section

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PedsQL

    Duchenne Muscular Dystrophy Module

    Version 3.0

    YOUNG ADULT REPORT (ages 18-25)

     

    DIRECTIONS

    Young Adults with Duchenne Muscular Dystrophy sometimes have special problems. Please tell us how much of a problem each one has been for you during the past ONE month by circling:

    0 if it is never a problem

    1 if it is almost never a problem

    2 if it is sometimes a problem

    3 if it is often a problem

    4 if it is almost always a problem

    There are no right or wrong answers.

    If you do not understand a question, please ask for help.

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    YOUNG ADULT REPORT (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    1 - I have trouble eating with a fork and knifee

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    2 - It is hard to write or draw with a pen or pencil

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    3 - It is hard to put on my clothes

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    4 - It is hard to use the toilet without help

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    5 - I need more time than others to complete tasks

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    6 - It is hard to take medicines

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    7 - My physical therapy or daily stretching hurts

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    8 - It is hard to be responsible for my medicines or physical therapy

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    YOUNG ADULT REPORT (ages 18-25)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    9 - It is hard to manage my muscle problem

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    10 - I worry about my muscle problem

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    11 - I worry whether or not my medicines are working

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    12 - I worry about my family

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    13 - I worry about needing help from others

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    14 - I worry about not being accepted by others

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

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    YOUNG ADULT REPORT (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    15 - I worry about being treated differently from others my age

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    YOUNG ADULT REPORT (ages 18-25)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    16 - It is hard for me to tell the doctors and nurses how i fell

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    YOUNG ADULT REPORT (ages 18-25)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    17 - It is hard for me to ask the doctors and nurses questions

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    YOUNG ADULT REPORT (ages 18-25)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    18 - It is hard for me to explain my muscle problem to other people

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PedsQL

    Duchenne Muscular Dystrophy Module

    Version 3.0

    PARENT REPORT for YOUNG ADULTS (ages 18-25)

     

    DIRECTIONS

    Young Adults with Duchenne Muscular Dystrophy sometimes have special problems. Please tell us how much of a problem each one has been for you during the past ONE month by circling:

    0 if it is never a problem

    1 if it is almost never a problem

    2 if it is sometimes a problem

    3 if it is often a problem

    4 if it is almost always a problem

    There are no right or wrong answers.

    If you do not understand a question, please ask for help.

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    1 - Trouble eating with a fork and knife

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    2 - Difficulty writing or drawing with a pen or pencil

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    3 - Difficulty putting his/her clothes on

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    4 - Using the toilet without assistance

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    5 - Needing more time to complete tasks

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    6 - Taking medicines

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    7 - Physical therapy or daily exercise causing pain

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    8 - Difficulty being responsible for medicines or physical therapy

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    9 - Difficulty managing his or her muscle problem

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    10 - Worrying about his or her muscle problem

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    11 - Worrying about whether or not medicines are working

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    12 - Worrying about his or her family

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    13 - Worrying about needing help from others

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    14 - Worrying about not being accepted by others

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    15 - Worrying about being treated differently than others his/her age

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    16 - Difficulty telling the doctors and nurses how he/she feels

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    17 - Difficulty asking the doctors and nurses questions

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG ADULTS (ages 18-25)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    18 - Difficulty explaining his/her muscle problem to other people

    PedsQL 3.0 - Parent (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PedsQL

    Duchenne Muscular Dystrophy Module

    Version 3.0

    TEEN REPORT (ages 13-18)

     

    DIRECTIONS

    Young Adults with Duchenne Muscular Dystrophy sometimes have special problems. Please tell us how much of a problem each one has been for you during the past ONE month by circling:

    0 if it is never a problem

    1 if it is almost never a problem

    2 if it is sometimes a problem

    3 if it is often a problem

    4 if it is almost always a problem

    There are no right or wrong answers.

    If you do not understand a question, please ask for help.

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    TEEN REPORT (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    1 - I have trouble eating with a fork and knife

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    2 - It is hard to write or draw with a pen or pencil

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    TEEN REPORT (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    3 - It is hard to put on my clothes

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    4 - It is hard to use the toilet without help

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    TEEN REPORT (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    5 - I need more time than others to complete tasks

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    6 - It is hard to take medicines

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    7 - My physical therapy or daily stretching hurts

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    TEEN REPORT (ages 13-18)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    8 - It is hard to be responsible for my medicines or physical therapy

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    9 - It is hard to manage my muscle problem

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    10 - I worry about my muscle problem

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    11 - I worry whether or not my medicines are working

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

     12 - I worry about my family 

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    13 - I worry about needing help from others

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    14 - I worry about not being accepted by others

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    15 - I worry about being treated differently from others my age

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    16 - It is hard for me to tell the doctors and nurses how i fell

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    TEEN REPORT (ages 13-18)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    17 - It is hard for me to ask the doctors and nurses questions

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    TEEN REPORT (ages 13-18)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    18 - It is hard for me to explain my muscle problem to other people

    PedsQL 3.0 (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PedsQL

    Duchenne Muscular Dystrophy Module

    Version 3.0

    PARENT REPORT for TEENS (ages 13-18)

     

    DIRECTIONS

    Young Adults with Duchenne Muscular Dystrophy sometimes have special problems. Please tell us how much of a problem each one has been for you during the past ONE month by circling:

    0 if it is never a problem

    1 if it is almost never a problem

    2 if it is sometimes a problem

    3 if it is often a problem

    4 if it is almost always a problem

    There are no right or wrong answers.

    If you do not understand a question, please ask for help.

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    1 - Trouble eating with a fork and knife

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    2 - Difficulty writing or drawing with a pen or pencil

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    3 - Difficulty putting his/her clothes on

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    4 - Using the toilet without assistance

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    5 - Needing more time to complete tasks

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    6 - Taking medicines

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    7 - Physical therapy or daily exercise causing pain

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    8 - Difficulty being responsible for medicines or physical therapy

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    9 - Difficulty managing his or her muscle problem

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    10 - Worrying about his or her muscle problem

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for TEEN (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    11 - Worrying about whether or not medicines are working

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for TEEN (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    12 - Worrying about his or her family

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for TEEN (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    13 - Worrying about needing help from others

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for TEEN (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    14 - Worrying about not being accepted from others

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for TEEN (ages 13-18)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    15 - Worrying about being treated differently than others his/her age

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    16 - Difficulty telling the doctors and nurses how he/she feels

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    17 - Difficulty asking the doctors and nurses questions

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for TEEN (ages 13-18)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    18 - Difficulty explaining his/her muscle problem to other people

    PedsQL 3.0 - Parent (13-18) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PedsQL

    Duchenne Muscular Dystrophy Module

    Version 3.0

    CHILD REPORT (ages 8-12)

     

    DIRECTIONS

    Young Adults with Duchenne Muscular Dystrophy sometimes have special problems. Please tell us how much of a problem each one has been for you during the past ONE month by circling:

    0 if it is never a problem

    1 if it is almost never a problem

    2 if it is sometimes a problem

    3 if it is often a problem

    4 if it is almost always a problem

    There are no right or wrong answers.

    If you do not understand a question, please ask for help.

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    1 - I have trouble eating with a fork and knife

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    2 - It is hard to write or draw with a pen or pencil

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    3 - It is hard to put on my clothes

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    4 - It is hard to use the toilet without help

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    5 - I need more time than others to complete tasks

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    6 - It is hard to take medicines

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    7 - My physical therapy or daily stretching hurts

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    8 - It is hard to be responsible for my medicines or physical therapy

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    CHILD REPORT (ages 8-12)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    9 - It is hard to manage my muscle problem

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    10 - I worry about my muscle problem

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    11 - I worry whether or not my medicines are working

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    12 - I worry about my family

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    13 - I worry about needing help from others

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    14 - I worry about not being accepted by others

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    15 - I worry about being treated differently from others my age

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    16 - It is hard for me to tell the doctors and nurses how i feel

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    17 - It is hard for me to ask the doctors and nurses questions

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    CHILD REPORT (ages 8-12)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for you during the past ONE month

    18 - It is hard for me to explain my muscle problem to other people

    PedsQL 3.0 (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PedsQL

    Duchenne Muscular Dystrophy Module

    Version 3.0

    PARENT REPORT for CHILDREN (ages 8-12)

     

    DIRECTIONS

    Young Adults with Duchenne Muscular Dystrophy sometimes have special problems. Please tell us how much of a problem each one has been for you during the past ONE month by circling:

    0 if it is never a problem

    1 if it is almost never a problem

    2 if it is sometimes a problem

    3 if it is often a problem

    4 if it is almost always a problem

    There are no right or wrong answers.

    If you do not understand a question, please ask for help.

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    1 - Trouble eating with a fork and knife

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    2 - Difficulty writing or drawing with a pen or pencil

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    3 - Difficulty putting his/her clothes on

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    4 - Using the toilet without assistance

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    5 - Needing more time to complete tasks

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    6 - Taking medicines

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    7 - Physical therapy or daily exercise causing pain

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    8 - Difficulty being responsible for medicines or physical therapy

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    9 - Difficulty managing his or her muscle problem

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    10 - Worrying about his or her muscle problem

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    11 - Worrying about whether or not medicines are working

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for CHILD(ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    12 - Worrying about his or her family

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for CHILD(ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    13 - Worrying about needing help from others

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for CHILD(ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    14 - Worrying about not being accepted by others

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for CHILD(ages 8-12)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    15 - Worrying about being treated differently than others his/her age

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for CHILD(ages 8-12)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    16 - Difficulty telling the doctors and nurses how he/she feels

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for CHILD(ages 8-12)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    17 - Difficulty asking the doctors and nurses questions

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for CHILD(ages 8-12)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    18 - Difficulty explaining his/her muscle problem to other people

    PedsQL 3.0 - Parent (8-12) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PedsQL

    Duchenne Muscular Dystrophy Module

    Version 3.0

    PARENT REPORT for YOUNG CHILDREN (ages 5-7)

     

    DIRECTIONS

    Young Adults with Duchenne Muscular Dystrophy sometimes have special problems. Please tell us how much of a problem each one has been for you during the past ONE month by circling:

    0 if it is never a problem

    1 if it is almost never a problem

    2 if it is sometimes a problem

    3 if it is often a problem

    4 if it is almost always a problem

    There are no right or wrong answers.

    If you do not understand a question, please ask for help.

    PedsQL 3.0 (18-25) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    1 - Trouble eating with a fork and knife

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    2 - Difficulty wiritng or drawing with a pen or pencil

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    3 - Difficulty putting his/her clothes on

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    4 - Using the toilet without assistance

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    DAILY ACTIVITIES (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    5 - Needing more time to complete tasks

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    6 - Taking medicines

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    7 - Physical therapy or daily exercise causing pain

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    8 - Difficulty being responsible for medicines or physical therapy

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    TREATMENT (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    9 - Difficulty managing his or her muscle problem

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    10 - Worrying about his or her muscle problem

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    11 - Worrying about whether or not medicines are working

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    12 - Worrying about his or her family

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    13 - Worrying about needing help from others

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    14 - Worrying about not being accepted by others

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    WORRY (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    15 - Worrying about being treated differently than others his/her age

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    16 - Difficulty telling the doctors and nurses how he/she feels

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    17 - Difficulty asking the doctors and nurses questions

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

    Back Next Save Progress

    PARENT REPORT for YOUNG CHILDREN(ages 5-7)

    COMMUNICATION (problems with...)

    Please tell us how much of a problem each one has been for your child during the past ONE month

    18 - Difficulty explaining his/her muscle problem to other people

    PedsQL 3.0 - Parent (5-7) Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

    4/17/2012

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