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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.

Specific Instructions:

None

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:

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

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
Human Phenotype Ontology Sickle Cell Anemia ORPHA:232 HPO
Human Phenotype Ontology Sickle Cell Anemia OMIM:603903 HPO
Human Phenotype Ontology Stroke HP:0001297 HPO
Derived Variables

None

Process and Review

Not applicable.

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 Name Variable IDVariable DescriptiondbGaP Mapping
PX820702_FunctionalityAfterStrokePediatrics_Affect_Daily_Activities
PX820702010103 Does the problem affect your child's more
day-to-day activities? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_CauseOfDeath
PX820702080200 If your child is deceased, please specify: more
Cause of death: ___________________________________________________________ show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_NewStroke
PX820702030203 If yes, did the CT /MRI show a new stroke? N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_Recurrence
PX820702030201 Did your child have a CT / MRI at the time more
of the recurrence? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_CT_MRI_Recurrence_WhichDone
PX820702030202 If yes, which test was done? N/A
PX820702_FunctionalityAfterStrokePediatrics_DateOfDeath
PX820702080100 If your child is deceased, please specify: more
Date of death: show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Expressing_Verbally
PX820702010201 Does your child have difficulty expressing more
him/herself verbally? (Exclude dysarthrias or pronunciation problems) show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Expressing_Verbally_Describe
PX820702010202 Does your child have difficulty expressing more
him/herself verbally? (Exclude dysarthrias or pronunciation problems): Please describe show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Thinking_Behavior
PX820702010401 Does your child have difficulty with his/her more
thinking or behavior? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Thinking_Behavior_Describe
PX820702010402 Does your child have difficulty with his/her more
thinking or behavior? Please describe show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Understanding
PX820702010301 Does your child have difficulty more
understanding what is said to her/him? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Understanding_Describe
PX820702010302 Does your child have difficulty more
understanding what is said to her/him? Please describe show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_HeadachesOrSeizures_Discharged
PX820702040100 Does your child suffer from headaches or more
seizures since being discharged after the stroke(s)? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Headaches_Discharged
PX820702040200 Headache N/A
PX820702_FunctionalityAfterStrokePediatrics_Help_DailyActivities_Compared_OtherChildren
PX820702020000 Does your child need extra help with more
day-to-day activities compared with other children of the same age? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_LeftSide_Face_Body
PX820702010105 Left side face or body N/A
PX820702_FunctionalityAfterStrokePediatrics_Long_Symptoms_Lasted
PX820702030400 Describe how long the symptoms lasted with more
the most recent attack: show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_MedicationsNow_Stroke_Treatment
PX820702060100 What medications are being used right now more
for stroke treatment? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_MedicationsNow_Stroke_Treatment_Describe
PX820702060200 What medications are being used right now more
for stroke treatment? Other(describe)" show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_New_Clinical_Symptoms
PX820702030301 Describe the new clinical symptoms at the more
time of the recurrence: show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_New_Clinical_Symptoms_Describe
PX820702030302 Describe the new clinical symptoms at the more
time of the recurrence: Other, describe show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_OtherHealthProblems_Procedures_FromStrokeOrTreatment
PX820702050100 Have there been any other major health more
problems or procedures resulting from the stroke(s) or the stroke(s) treatment? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_OtherHealthProblems_Procedures_FromStrokeOrTreatmentDescribe
PX820702050200 If yes, describe: more
___________________________________________________________ show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Problems_Strength_Coordination_Sensation
PX820702010101 Does your child have any problems with more
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: show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Problems_Strength_Coordination_SensationDescribe
PX820702010102 Does your child have any problems with more
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 show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Recovered_Completely
PX820702010000 Has your child recovered completely from the more
stroke? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Rehabilitation_Treatment_Now
PX820702070100 What rehabilitation treatments is your child more
receiving now? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Rehabilitation_Treatment_Now_Describe
PX820702070200 What rehabilitation treatments is your child more
receiving now? Other (describe): show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_RightSide_Face_Body
PX820702010104 Right side face or body N/A
PX820702_FunctionalityAfterStrokePediatrics_Seizures_Discharged
PX820702040301 Seizures N/A
PX820702_FunctionalityAfterStrokePediatrics_Seizures_Medicine_Now
PX820702040302 If yes, is he/she on a seizure medicine now? N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClot
PX820702030101 Since the first stroke, has your child had more
another Stroke or Transient Ischemic Attack (TIA) or blood clot in any other blood vessel (e.g. in the leg, lung, heart, other location) ? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClotType
PX820702030102 If yes, which type? N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClotType_Other
PX820702030103 If yes, which type? Other blood clot: (State more
location of blood clot :_______________ ) show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClot_WhenRecurrence
PX820702030104 If yes, when was the recurrence (if unknown, more
please estimate)? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Total_Episodes
PX820702030500 If there was more than one episode, how many more
episodes occurred?_________________ show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Treatment_Beginning_Episode
PX820702030601 What stroke treatment was he/she on at the more
beginning of the episode? show less
N/A
PX820702_FunctionalityAfterStrokePediatrics_Treatment_Beginning_Episode_Describe
PX820702030602 What stroke treatment was he/she on at the more
beginning of the episode? Other (describe): show less
N/A
Sickle Cell Disease
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