Quality Improvement and Juvenile Dermatomyositis_2

We would like to work to improve the care of children with Juvenile Myositis (JM), including Juvenile Dermatomyositis (JDM) and Polymyositis.

Unfortunately, there are no formalized measures of quality of care in Juvenile Myositis (JM). Together with members of CARRA (Childhood Arthritis & Rheumatology Research Alliance), we have the power to develop measures of quality that are important to patients and families with JM, but also useful for clinicians who care for these patients and families.

This is an IRB approved survey. Proceeding with this web-based survey will imply your consent to participate in this study, and participants will remain anonymous. If this work is fruitful, our intention would be possible future publication and application for funding to expand this work.

Question Title

* 1. Are you a clinician who cares for children with Juvenile Myositis (JDM andPM)?

Yes, I am a pediatric Rheumatologist

Yes, I am an adult Rheumatologist

Yes, I am a pediatric Neurologist

Yes, I am an adult Neurologist

Yes, I am a pediatric Physical Therapist

Yes, I am an adult Physical Therapist

Yes, I am a pediatric Nurse Practitioner

Yes, I am an adult Nurse Practitioner

Yes, I am a pediatric Nurse

Yes, I am an adult Nurse

No, Other

Other (please specify)

Question Title

* 2. In which Geographic Region that you practice?

United States

Canada

Europe

Central America

South America

Asia

Africa

Austrailia

Other (please specify)

Question Title

* 3. How long have you cared for children with Juvenile Myositis?

1-5 years

6-10 years

11-20 years

>20 years

Question Title

* 4. Please estimate the number of patients with Juvenile Myositis that you follow?

1-5

6-10

11-15

16-20

21-25

26-30

>30-40

Other (please specify)

Question Title

* 5. What labs are performed in your patients with Juvenile Myositis?

Not applicable

LDH

AST

ALT

Aldolase

Factor 8 related antigen

CBC

C-reactive protein

ESR

ANA

Myositis specific antigens

Myositis associated antigens

double stranded DNA

ENA (eg: SS-A, SS-B, RNP, Sm, Scl-70)

Other (please specify)

Question Title

* 6. What additional testing do you perform in your patients with Juvenile Myositis?

EMG

MRI

Skin biopsy

Muscle biopsy

Other (please specify)

Question Title

* 7. Are the following monitored in your practice in patients with Juvenile Myositis?

Overall Quality of Life; Child Health Questionnaire Physical Summary Score

Physician Global Activity - Visual Analogue Scale/Likert

Patient/Parent Global Activity - Visual Analogue Scale/Likert

Muscle Strength Testing - general

Muscle Strength Testing - Manual Muscle Testing (MMT)

Functional Assessment Tools - CHAQ (Childhood Health Assessment Questionnaire)

Functional Assessment Tools - CMAS (Childhood Myositis Assessment Scale)

Extramuscular Assessment - Myositis Disease Activity Assessment Tool (MDAAT)

Disease Activity Score (DAS)

Myositis Disease Damage Index (MDI)

Physician Global Assessment of Disease Damage

Patient/Parent Global Assessment of Disease Damage

Ability for Self Care/Activities of Daily Living

Medication Tolerance

Time to discontinuation of Medications

Resolution of Pain

Resolution of Fatigue

Resolution of Rash

Normalization of Functioning

School Attendance

Work Attendance

Other (please specify)

Question Title

* 8. From your perspective, which quality measures or indicators are most important in the care of an child with JM?

• "1" very low importance
• "2" low importance
• "3" medium importance
• "4" very importanct
• "5" most important

	1	2	3	4	5
Timely Diagnosis	Timely Diagnosis 1	Timely Diagnosis 2	Timely Diagnosis 3	Timely Diagnosis 4	Timely Diagnosis 5
Access to Rheumatology (Ease of getting an appointment)	Access to Rheumatology (Ease of getting an appointment) 1	Access to Rheumatology (Ease of getting an appointment) 2	Access to Rheumatology (Ease of getting an appointment) 3	Access to Rheumatology (Ease of getting an appointment) 4	Access to Rheumatology (Ease of getting an appointment) 5
Access to Dermatology (Ease of getting an appointment)	Access to Dermatology (Ease of getting an appointment) 1	Access to Dermatology (Ease of getting an appointment) 2	Access to Dermatology (Ease of getting an appointment) 3	Access to Dermatology (Ease of getting an appointment) 4	Access to Dermatology (Ease of getting an appointment) 5
Access to Physical Therapy (Ease of getting an appointment)	Access to Physical Therapy (Ease of getting an appointment) 1	Access to Physical Therapy (Ease of getting an appointment) 2	Access to Physical Therapy (Ease of getting an appointment) 3	Access to Physical Therapy (Ease of getting an appointment) 4	Access to Physical Therapy (Ease of getting an appointment) 5
Medication Counseling	Medication Counseling 1	Medication Counseling 2	Medication Counseling 3	Medication Counseling 4	Medication Counseling 5
Monitoring of medication toxicity	Monitoring of medication toxicity 1	Monitoring of medication toxicity 2	Monitoring of medication toxicity 3	Monitoring of medication toxicity 4	Monitoring of medication toxicity 5
Medication tolerance	Medication tolerance 1	Medication tolerance 2	Medication tolerance 3	Medication tolerance 4	Medication tolerance 5
Discontinution of steroids/prednisone	Discontinution of steroids/prednisone 1	Discontinution of steroids/prednisone 2	Discontinution of steroids/prednisone 3	Discontinution of steroids/prednisone 4	Discontinution of steroids/prednisone 5
Discontinuation of Medications	Discontinuation of Medications 1	Discontinuation of Medications 2	Discontinuation of Medications 3	Discontinuation of Medications 4	Discontinuation of Medications 5
Normalization of Labs	Normalization of Labs 1	Normalization of Labs 2	Normalization of Labs 3	Normalization of Labs 4	Normalization of Labs 5
Overall Quality of Life	Overall Quality of Life 1	Overall Quality of Life 2	Overall Quality of Life 3	Overall Quality of Life 4	Overall Quality of Life 5
Ability for Self Care/Activities of Daily Living	Ability for Self Care/Activities of Daily Living 1	Ability for Self Care/Activities of Daily Living 2	Ability for Self Care/Activities of Daily Living 3	Ability for Self Care/Activities of Daily Living 4	Ability for Self Care/Activities of Daily Living 5
Resolution of Pain	Resolution of Pain 1	Resolution of Pain 2	Resolution of Pain 3	Resolution of Pain 4	Resolution of Pain 5
Resolution of Fatigue	Resolution of Fatigue 1	Resolution of Fatigue 2	Resolution of Fatigue 3	Resolution of Fatigue 4	Resolution of Fatigue 5
Resolution of Rash	Resolution of Rash 1	Resolution of Rash 2	Resolution of Rash 3	Resolution of Rash 4	Resolution of Rash 5
Normalization of Functioning/Strength	Normalization of Functioning/Strength 1	Normalization of Functioning/Strength 2	Normalization of Functioning/Strength 3	Normalization of Functioning/Strength 4	Normalization of Functioning/Strength 5
School Attendance	School Attendance 1	School Attendance 2	School Attendance 3	School Attendance 4	School Attendance 5
Work Attendance	Work Attendance 1	Work Attendance 2	Work Attendance 3	Work Attendance 4	Work Attendance 5
Minimizing Hospital/Clinic Visits	Minimizing Hospital/Clinic Visits 1	Minimizing Hospital/Clinic Visits 2	Minimizing Hospital/Clinic Visits 3	Minimizing Hospital/Clinic Visits 4	Minimizing Hospital/Clinic Visits 5

Other (please specify)

Quality Improvement and Juvenile Dermatomyositis_2

Question Title

* 1. Are you a clinician who cares for children with Juvenile Myositis (JDM andPM)?

Question Title

* 2. In which Geographic Region that you practice?

Question Title

* 3. How long have you cared for children with Juvenile Myositis?

Question Title

* 4. Please estimate the number of patients with Juvenile Myositis that you follow?

Question Title

* 5. What labs are performed in your patients with Juvenile Myositis?

Question Title

* 6. What additional testing do you perform in your patients with Juvenile Myositis?

Question Title

* 7. Are the following monitored in your practice in patients with Juvenile Myositis?

Question Title

* 8. From your perspective, which quality measures or indicators are most important in the care of an child with JM?

• "1" very low importance
• "2" low importance
• "3" medium importance
• "4" very importanct
• "5" most important

Question Title

* 9. If you have any questions/comments about this survey please feel free to list them here:

Question Title

* 10. If you would like to be more actively involved with this project, please send email me directly at: Susan.kim@childrens.harvard.edu

Question Title

* 1. Are you a clinician who cares for children with Juvenile Myositis (JDM andPM)?

Question Title

* 2. In which Geographic Region that you practice?

Question Title

* 3. How long have you cared for children with Juvenile Myositis?

Question Title

* 4. Please estimate the number of patients with Juvenile Myositis that you follow?

Question Title

* 5. What labs are performed in your patients with Juvenile Myositis?

Question Title

* 6. What additional testing do you perform in your patients with Juvenile Myositis?

Question Title

* 7. Are the following monitored in your practice in patients with Juvenile Myositis?

Question Title

* 8. From your perspective, which quality measures or indicators are most important in the care of an child with JM?• "1" very low importance• "2" low importance• "3" medium importance• "4" very importanct• "5" most important

Question Title

* 9. If you have any questions/comments about this survey please feel free to list them here:

Question Title

* 10. If you would like to be more actively involved with this project, please send email me directly at: Susan.kim@childrens.harvard.edu

* 8. From your perspective, which quality measures or indicators are most important in the care of an child with JM?

• "1" very low importance
• "2" low importance
• "3" medium importance
• "4" very importanct
• "5" most important