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Protocol - Recovery and Recurrence Questionnaire (RRQ) - Pediatrics

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Protocol Name from Source:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

Description:

The Recovery and Recurrence Questionnaire (RRQ) includes seven questions completed by a parent about their child. Questions 1A to 1D capture problems with strength, coordination, or sensation, problems with expression, problems with understanding, and problems with thoughts or behaviors. Questions 2 to 7 capture difficulties with day-to-day activities, recurrence of stroke, occurrence of headaches or seizures, other medical problems, medications, and treatments. Responses from questions 1A to 1D are summed to give a total score, with higher scores indicating greater functional impairment.

Protocol:

International Pediatric Stroke Study (IPSS) Recovery and Recurrence Questionnaire

Note: If child has died since discharge from hospital, please go directly to item 8 (skip items 1-7)

Q1. Has your child recovered completely from the stroke?

[ ] Yes

[ ] No - If no, please answer the following questions:

1A. Does your child have any problems with strength, coordination, or sensation including vision or hearing, as a result of the stroke? If yes, please choose which of the following are present in your child:

[ ] Developmental delay

[ ] Difficulty with speaking clearly (problem with pronouncing words)

[ ] Abnormal tone

[ ] Difficulty with drinking, chewing or swallowing

[ ] Weakness on one side of the body

[ ] Loss of sensation on one side of the body

[ ] Weakness on one side of the face

[ ] Other sensory problems

[ ] Unsteadiness on one side of the body

[ ] Difficulty with vision

[ ] Difficulty with hearing

[ ] Other problems with strength or coordination; Describe:______________________

Does the problem affect your child’s day-to-day activities?

[ ] Yes

[ ] No

Right side face or body

Left side face or body

Not Done

n/t

n/t

None

0

0

Mild but no impact on function

0.5

0.5

Moderate with some limitations with daily functions

1

1

Severe or Profound with missing function

2

2

1B. Does your child have difficulty expressing him/herself verbally? (Exclude dysarthrias or pronunciation problems)

Not Done

n/t

None

0

Mild but no impact on function

0.5

Moderate with some limitations with daily functions

1

Severe or Profound with missing function

2

Please describe: ___________________________

1C. Does your child have difficulty understanding what is said to her/him?

Not Done

n/t

None

0

Mild but no impact on function

0.5

Moderate with some limitations with daily functions

1

Severe or Profound with missing function

2

Please describe: ___________________________

1D. Does your child have difficulty with his/her thinking or behavior?

Not Done

n/t

None

0

Mild but no impact on function

0.5

Moderate with some limitations with daily functions

1

Severe or Profound with missing function

2

Please describe: ___________________________

TOTAL PARENTAL PSOM SCORE: ___________/10

Q2. Does your child need extra help with day-to-day activities compared with other children of the same age?

[ ] Yes

[ ] No

Q3. Since the first stroke, has your child had another Stroke or Transient Ischemic Attack (TIA) or blood clot in any other blood vessel (e.g. in the leg, lung, heart, other location) ?

[ ] Yes

[ ] No

[ ] Unknown

If yes, which type?

[ ] Unknown

[ ] Stroke in a brain artery (usual form of ‘stroke’)

[ ] Stroke in a brain vein (‘sinus thrombosis’)

[ ] TIA

[ ] Other blood clot: (State location of blood clot :_______________ )

If yes, when was the recurrence (if unknown, please estimate)? Year______ Month_____ Day____

Did your child have a CT / MRI at the time of the recurrence?

[ ] Yes

[ ] No

[ ] Unknown

If yes,

a) which test was done?

[ ] CT

[ ] MRI

[ ] Unknown

b) did the CT /MRI show a new stroke?

[ ] Yes

[ ] No

[ ] Unknown

Describe the new clinical symptoms at the time of the recurrence:

[ ] Difficulty walking

[ ] Difficulty using hands

[ ] Difficulty speaking

[ ] Difficulty with vision

[ ] Difficulty with drinking, chewing or swallowing

[ ] Other, describe: ______________________________

Describe how long the symptoms lasted with the most recent attack:

[ ] Less than 6hrs

[ ] 6-24 hours

[ ] More than 24 hours

If there was more than one episode, how many episodes occurred?_________________

What stroke treatment was he/she on at the beginning of the episode?

[ ] None

[ ] Aspirin

[ ] Low molecular weight Heparin (Enoxaparin, Loxaprin, injections under the skin)

[ ] Coumadin (blood thinning pill) Other (describe): ______________________

Q4. Does your child suffer from headaches or seizures since being discharged after the stroke(s)?

Headache:

[ ] Yes

[ ] No

Seizures:

[ ] Yes

[ ] No

If yes is he/she on a seizure medicine now?

[ ] Yes

[ ] No

Q5. Have there been any other major health problems or procedures resulting from the stroke(s) or the stroke(s) treatment?

[ ] Yes

[ ] No

If yes, describe: ___________________________________________________________

Q6. What medications are being used right now for stroke treatment?

[ ] None

[ ] Aspirin

[ ] LMWH (blood thinner injected under the skin)

[ ] Coumadin (blood thinner pill)

[ ] Other (describe): __________________________

Q7. What rehabilitation treatments is your child receiving now?

[ ] None

[ ] Occupational Therapy

[ ] Physical Therapy

[ ] Speech therapy

[ ] Special education services

[ ] Other (describe): ________________________________________

Q8. If your child is deceased, please specify:

Date of death: Year______ Month_____ Day____

Cause of death: ___________________________________________________________

Scoring:

The scores from questions 1A-1D are summed to give a total score, with higher scores indicating greater disability.

Personnel and Training Required

None

Equipment Needs

None

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualNo
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Self-administered

Life Stage:

Infant, Toddler, Child, Adolescent

Specific Instructions:

None

Research Domain Information

Release Date:

July 30, 2015

Definition

A questionnaire to measure the health status of individuals who had a stroke.

Purpose

This measure is used to assess multidimensional stroke outcomes in both clinical and research settings.

Selection Rationale

The Recovery and Recurrence Questionnaire (RRQ) is a brief, reliable, and valid proxy-administered questionnaire that can be used to characterize function after a stroke if a physical examination cannot be performed.

Language

English

Standards

StandardNameIDSource
Common Data Elements (CDE)Stroke Recovery and Recurrence Questionnaire Assessment Text4924256CDE Browser

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

Lo, W.D., Ichord, R.N., Dowling, M.M., Rafay, M., Templeton, J., Halperin, A., Smith, S.E., Licht. D.J., Moharir, M., Askalan, R., Deveber, G.; International Pediatric Stroke Study (IPSS) Investigators. (2012). The Pediatric Stroke Recurrence and Recovery Questionnaire: Validation in a prospective cohort. Neurology, 79(9), 864-870.

General References

Lo, W., Zamel, K., Ponnappa, K., Allen, A., Chisolm, D., Tang, M., Kerlin, B., & Yeats, K.O. (2008). The cost of pediatric stroke care and rehabilitation. Stroke, 39(1), 161-165.

Lo, W.D., Hajek, C., Pappa, C., Wang, W., & Zumberge, N. (2013). Outcomes in children with hemorrhagic stroke. JAMA Neurology, 70(1), 66-71.

Protocol ID:

820702

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX820702_FunctionalityAfterStrokePediatrics_Problems_Strength_Coordination_SensationPX820702010101Does your child have any problems with strength, coordination, or sensation including vision or hearing, as a result of the stroke? If yes, please choose which of the following are present in your child:4N/A
PX820702_FunctionalityAfterStrokePediatrics_Problems_Strength_Coordination_SensationDescribePX820702010102Does your child have any problems with strength, coordination, or sensation including vision or hearing, as a result of the stroke? If yes, please choose which of the following are present in your child: Please describe4N/A
PX820702_FunctionalityAfterStrokePediatrics_Affect_Daily_ActivitiesPX820702010103Does the problem affect your child¿¿¿s day-to-day activities?4N/A
PX820702_FunctionalityAfterStrokePediatrics_RightSide_Face_BodyPX820702010104Right side face or body4N/A
PX820702_FunctionalityAfterStrokePediatrics_LeftSide_Face_BodyPX820702010105Left side face or body4N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Expressing_VerballyPX820702010201Does your child have difficulty expressing him/herself verbally? (Exclude dysarthrias or pronunciation problems)4N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Expressing_Verbally_DescribePX820702010202Does your child have difficulty expressing him/herself verbally? (Exclude dysarthrias or pronunciation problems): Please describe4N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_UnderstandingPX820702010301Does your child have difficulty understanding what is said to her/him?4N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Understanding_DescribePX820702010302Does your child have difficulty understanding what is said to her/him? Please describe4N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Thinking_BehaviorPX820702010401Does your child have difficulty with his/her thinking or behavior?4N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Thinking_Behavior_DescribePX820702010402Does your child have difficulty with his/her thinking or behavior? Please describe4N/A
PX820702_FunctionalityAfterStrokePediatrics_Help_DailyActivities_Compared_OtherChildrenPX820702020000Does your child need extra help with day-to-day activities compared with other children of the same age?4N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClotPX820702030101Since the first stroke, has your child had another Stroke or Transient Ischemic Attack (TIA) or blood clot in any other blood vessel (e.g. in the leg, lung, heart, other location) ?4N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClotTypePX820702030102If yes, which type?4N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClotType_OtherPX820702030103If yes, which type? Other blood clot: (State location of blood clot :_______________ )4N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClot_WhenRecurrencePX820702030104If yes, when was the recurrence (if unknown, please estimate)?4N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_RecurrencePX820702030201Did your child have a CT / MRI at the time of the recurrence?4N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_Recurrence_WhichDonePX820702030202If yes, which test was done?4N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_NewStrokePX820702030203If yes, did the CT /MRI show a new stroke?4N/A
PX820702_FunctionalityAfterStrokePediatrics_New_Clinical_SymptomsPX820702030301Describe the new clinical symptoms at the time of the recurrence:4N/A
PX820702_FunctionalityAfterStrokePediatrics_New_Clinical_Symptoms_DescribePX820702030302Describe the new clinical symptoms at the time of the recurrence: Other, describe4N/A
PX820702_FunctionalityAfterStrokePediatrics_Long_Symptoms_LastedPX820702030400Describe how long the symptoms lasted with the most recent attack:4N/A
PX820702_FunctionalityAfterStrokePediatrics_Total_EpisodesPX820702030500If there was more than one episode, how many episodes occurred?_________________4N/A
PX820702_FunctionalityAfterStrokePediatrics_Treatment_Beginning_EpisodePX820702030601What stroke treatment was he/she on at the beginning of the episode?4N/A
PX820702_FunctionalityAfterStrokePediatrics_Treatment_Beginning_Episode_DescribePX820702030602What stroke treatment was he/she on at the beginning of the episode? Other (describe):4N/A
PX820702_FunctionalityAfterStrokePediatrics_HeadachesOrSeizures_DischargedPX820702040100Does your child suffer from headaches or seizures since being discharged after the stroke(s)?4N/A
PX820702_FunctionalityAfterStrokePediatrics_Headaches_DischargedPX820702040200Headache4N/A
PX820702_FunctionalityAfterStrokePediatrics_Seizures_Medicine_NowPX820702040302If yes, is he/she on a seizure medicine now?4N/A
PX820702_FunctionalityAfterStrokePediatrics_OtherHealthProblems_Procedures_FromStrokeOrTreatmentPX820702050100Have there been any other major health problems or procedures resulting from the stroke(s) or the stroke(s) treatment?4N/A
PX820702_FunctionalityAfterStrokePediatrics_OtherHealthProblems_Procedures_FromStrokeOrTreatmentDescribePX820702050200If yes, describe: ___________________________________________________________4N/A
PX820702_FunctionalityAfterStrokePediatrics_MedicationsNow_Stroke_TreatmentPX820702060100What medications are being used right now for stroke treatment?4N/A
PX820702_FunctionalityAfterStrokePediatrics_MedicationsNow_Stroke_Treatment_DescribePX820702060200What medications are being used right now for stroke treatment? Other(describe)"4N/A
PX820702_FunctionalityAfterStrokePediatrics_Rehabilitation_Treatment_NowPX820702070100What rehabilitation treatments is your child receiving now?4N/A
PX820702_FunctionalityAfterStrokePediatrics_Rehabilitation_Treatment_Now_DescribePX820702070200What rehabilitation treatments is your child receiving now? Other (describe):4N/A
PX820702_FunctionalityAfterStrokePediatrics_DateOfDeathPX820702080100If your child is deceased, please specify: Date of death:4N/A
PX820702_FunctionalityAfterStrokePediatrics_CauseOfDeathPX820702080200If your child is deceased, please specify: Cause of death: ___________________________________________________________4N/A
PX820702_FunctionalityAfterStrokePediatrics_Seizures_DischargedPX820702040301Seizures4N/A
PX820702_FunctionalityAfterStrokePediatrics_Recovered_CompletelyPX820702010000Has your child recovered completely from the stroke?4N/A