Quality Improvement and Juvenile Dermatomyositis

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

Unfortunately, there are no formalized measures of quality of care in JM. Together with members of organizations like CureJM and 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.

The first series of questions are for baseline assessment of the type/extent of JM, followed by questions regarding specific measures which we ask you to rate in terms of importance.

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 continued collaboration with CureJM, possible future publication and application for funding to expand this work.

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* 1. Which type of Juvenile Myositis does your child have?

Juvenile Dermatomyositis

Juvenile Polymyositis

Other (please specify)

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* 2. What is your relationship to your child with JM?

Self

Parent

Aunt/Uncle

Grandparent

Other (please specify)

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* 3. Basic Information Regarding the individual with JM:


Current Age (years)	Current Age (years) menu
Age at Diagnosis (years)	Age at Diagnosis (years) menu
Time to Diagnosis, approximate (months)	Time to Diagnosis, approximate (months) menu

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* 4. What is the gender of the individual with JM?

Female

Male

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* 5. What is the ethnicity of the individual with JM? (Please select all that apply.)

American Indian or Alaskan Native

Asian or Pacific Islander

Black or African American

Hispanic or Latino

White / Caucasian

Prefer not to answer

Other (please specify)

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* 6. From your perspective, over the past 2 weeks, how has JM affected the functioning of your child ?

A rating of "1" would indicate "poorly" and "5" would indicate "no evidence of disease".

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* 7. From your perspective, at its worst, how has JM affected the functioning of your child?

A rating of "1" would indicate "poorly" and "5" would indicate "no evidence of disease".

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* 8. How important are the following for a JM patient?

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

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

Other (please specify)

Question Title

* 1. Which type of Juvenile Myositis does your child have?

Question Title

* 2. What is your relationship to your child with JM?

Question Title

* 3. Basic Information Regarding the individual with JM:

Question Title

* 4. What is the gender of the individual with JM?

Question Title

* 5. What is the ethnicity of the individual with JM? (Please select all that apply.)

Question Title

* 6. From your perspective, over the past 2 weeks, how has JM affected the functioning of your child ? A rating of "1" would indicate "poorly" and "5" would indicate "no evidence of disease".

Question Title

* 7. From your perspective, at its worst, how has JM affected the functioning of your child? A rating of "1" would indicate "poorly" and "5" would indicate "no evidence of disease".

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* 8. How important are the following for a JM patient? • "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 or email me at ImprovingOutcomesJM@gmail.com:

* 6. From your perspective, over the past 2 weeks, how has JM affected the functioning of your child ?

A rating of "1" would indicate "poorly" and "5" would indicate "no evidence of disease".

* 7. From your perspective, at its worst, how has JM affected the functioning of your child?

A rating of "1" would indicate "poorly" and "5" would indicate "no evidence of disease".

* 8. How important are the following for a JM patient?

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