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Protocol - Recovery and Recurrence Questionnaire (RRQ) - Pediatrics

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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.

Protocol Name from Source:

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

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self- or proxy-administered questionnaire

Life Stage:

Infant, Toddler, Child, Adolescent

Participants:

Children and adolescents who have a stroke, ages 0-18

Specific Instructions:

None

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 Text 4924256 CDE 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_Affect_Daily_Activities PX820702010103 Does the problem affect your child's day-to-day activities? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_CauseOfDeath PX820702080200 If your child is deceased, please specify: Cause of death: ___________________________________________________________ 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_NewStroke PX820702030203 If yes, did the CT /MRI show a new stroke? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_Recurrence PX820702030201 Did your child have a CT / MRI at the time of the recurrence? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_Recurrence_WhichDone PX820702030202 If yes, which test was done? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_DateOfDeath PX820702080100 If your child is deceased, please specify: Date of death: 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Expressing_Verbally PX820702010201 Does your child have difficulty expressing him/herself verbally? (Exclude dysarthrias or pronunciation problems) 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Expressing_Verbally_Describe PX820702010202 Does your child have difficulty expressing him/herself verbally? (Exclude dysarthrias or pronunciation problems): Please describe 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Thinking_Behavior PX820702010401 Does your child have difficulty with his/her thinking or behavior? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Thinking_Behavior_Describe PX820702010402 Does your child have difficulty with his/her thinking or behavior? Please describe 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Understanding PX820702010301 Does your child have difficulty understanding what is said to her/him? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Understanding_Describe PX820702010302 Does your child have difficulty understanding what is said to her/him? Please describe 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_HeadachesOrSeizures_Discharged PX820702040100 Does your child suffer from headaches or seizures since being discharged after the stroke(s)? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Headaches_Discharged PX820702040200 Headache 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Help_DailyActivities_Compared_OtherChildren PX820702020000 Does your child need extra help with day-to-day activities compared with other children of the same age? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_LeftSide_Face_Body PX820702010105 Left side face or body 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Long_Symptoms_Lasted PX820702030400 Describe how long the symptoms lasted with the most recent attack: 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_MedicationsNow_Stroke_Treatment PX820702060100 What medications are being used right now for stroke treatment? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_MedicationsNow_Stroke_Treatment_Describe PX820702060200 What medications are being used right now for stroke treatment? Other(describe)" 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_New_Clinical_Symptoms PX820702030301 Describe the new clinical symptoms at the time of the recurrence: 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_New_Clinical_Symptoms_Describe PX820702030302 Describe the new clinical symptoms at the time of the recurrence: Other, describe 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_OtherHealthProblems_Procedures_FromStrokeOrTreatment PX820702050100 Have there been any other major health problems or procedures resulting from the stroke(s) or the stroke(s) treatment? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_OtherHealthProblems_Procedures_FromStrokeOrTreatmentDescribe PX820702050200 If yes, describe: ___________________________________________________________ 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Problems_Strength_Coordination_Sensation PX820702010101 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: 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Problems_Strength_Coordination_SensationDescribe PX820702010102 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: Please describe 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Recovered_Completely PX820702010000 Has your child recovered completely from the stroke? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Rehabilitation_Treatment_Now PX820702070100 What rehabilitation treatments is your child receiving now? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Rehabilitation_Treatment_Now_Describe PX820702070200 What rehabilitation treatments is your child receiving now? Other (describe): 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_RightSide_Face_Body PX820702010104 Right side face or body 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Seizures_Discharged PX820702040301 Seizures 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Seizures_Medicine_Now PX820702040302 If yes, is he/she on a seizure medicine now? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClot PX820702030101 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) ? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClotType PX820702030102 If yes, which type? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClotType_Other PX820702030103 If yes, which type? Other blood clot: (State location of blood clot :_______________ ) 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClot_WhenRecurrence PX820702030104 If yes, when was the recurrence (if unknown, please estimate)? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Total_Episodes PX820702030500 If there was more than one episode, how many episodes occurred?_________________ 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Treatment_Beginning_Episode PX820702030601 What stroke treatment was he/she on at the beginning of the episode? 4 N/A
PX820702_FunctionalityAfterStrokePediatrics_Treatment_Beginning_Episode_Describe PX820702030602 What stroke treatment was he/she on at the beginning of the episode? Other (describe): 4 N/A
Research Domain Information
Measure Name:

Functionality after Stroke

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.

Keywords

Stroke, Stroke Impact Scale, SIS, multidimensional stroke outcomes, Pediatric Stroke Outcome Measure, PSOM, Recovery and Recurrence Questionnaire, RRQ, Sickle Cell Disease, SCD, Infant, Child, Adolescent, Teen, Elderly, Geriatrics, Level of Consciousness, LOC, Behavior, Mental status, Language, Cranial nerves, Motor exam, Motor testing, Fine motor, Gross motor, Involuntary movements, Tendon reflexes, Coordination, Sensory, Gait, Stroke recovery