Protocol - Recovery and Recurrence Questionnaire (RRQ) - Pediatrics
- Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)
- Emotional Distress
- General Well-being
- History of Stroke - Ischemic Infarction and Hemorrhage
- Impairment - Adolescent
- Impairment - Adult
- PedsQL Sickle Cell Disease Module
- Physical, Social, and Mental Health Functioning (SF-36V2)
- Quality of Life - Adult
- Quality of Life - Pediatric
- Quality of Life Enjoyment and Satisfaction - Adult
- Quality of Life Enjoyment and Satisfaction - Children
- Stroke Risk in Children with Sickle Cell Disease - TCD
- Stroke Risk in Children with Sickle Cell Disease - TCDi
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
Availability
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 Category | Required |
---|---|
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
Lifestage
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
Standard | Name | ID | Source |
---|---|---|---|
Human Phenotype Ontology | Sickle Cell Anemia | ORPHA:232 | HPO |
Human Phenotype Ontology | Anemia | OMIM:603903 | HPO |
Human Phenotype Ontology | Stroke | HP:0001297 | HPO |
caDSR Form | PhenX PX820702 - Recovery And Recurrence Questionnaire Rrq Pediatrics | 6254814 | caDSR Form |
Derived Variables
None
Process and Review
Not applicable.
Protocol Name from Source
The Recovery and Recurrence Questionnaire (RRQ)
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 VariablesVariable Name | Variable ID | Variable Description | dbGaP Mapping | |
---|---|---|---|---|
PX820702_FunctionalityAfterStrokePediatrics_Affect_Daily_Activities | ||||
PX820702010103 | Does the problem affect your child's more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_CauseOfDeath | ||||
PX820702080200 | If your child is deceased, please specify: more | 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 | 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 | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Expressing_Verbally | ||||
PX820702010201 | Does your child have difficulty expressing more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Expressing_Verbally_Describe | ||||
PX820702010202 | Does your child have difficulty expressing more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Thinking_Behavior | ||||
PX820702010401 | Does your child have difficulty with his/her more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Thinking_Behavior_Describe | ||||
PX820702010402 | Does your child have difficulty with his/her more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Understanding | ||||
PX820702010301 | Does your child have difficulty more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Difficulty_Understanding_Describe | ||||
PX820702010302 | Does your child have difficulty more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_HeadachesOrSeizures_Discharged | ||||
PX820702040100 | Does your child suffer from headaches or more | 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 | 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 | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_MedicationsNow_Stroke_Treatment | ||||
PX820702060100 | What medications are being used right now more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_MedicationsNow_Stroke_Treatment_Describe | ||||
PX820702060200 | What medications are being used right now more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_New_Clinical_Symptoms | ||||
PX820702030301 | Describe the new clinical symptoms at the more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_New_Clinical_Symptoms_Describe | ||||
PX820702030302 | Describe the new clinical symptoms at the more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_OtherHealthProblems_Procedures_FromStrokeOrTreatment | ||||
PX820702050100 | Have there been any other major health more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_OtherHealthProblems_Procedures_FromStrokeOrTreatmentDescribe | ||||
PX820702050200 | If yes, describe: more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Problems_Strength_Coordination_Sensation | ||||
PX820702010101 | Does your child have any problems with more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Problems_Strength_Coordination_SensationDescribe | ||||
PX820702010102 | Does your child have any problems with more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Recovered_Completely | ||||
PX820702010000 | Has your child recovered completely from the more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Rehabilitation_Treatment_Now | ||||
PX820702070100 | What rehabilitation treatments is your child more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Rehabilitation_Treatment_Now_Describe | ||||
PX820702070200 | What rehabilitation treatments is your child more | 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 | 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 | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClot_WhenRecurrence | ||||
PX820702030104 | If yes, when was the recurrence (if unknown, more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Total_Episodes | ||||
PX820702030500 | If there was more than one episode, how many more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Treatment_Beginning_Episode | ||||
PX820702030601 | What stroke treatment was he/she on at the more | N/A | ||
PX820702_FunctionalityAfterStrokePediatrics_Treatment_Beginning_Episode_Describe | ||||
PX820702030602 | What stroke treatment was he/she on at the more | N/A |
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, "Neurology, quality of life, and Health Services"
Measure Protocols
Protocol ID | Protocol Name |
---|---|
820701 | Stroke Impact Scale (SIS) - Adults |
820702 | Recovery and Recurrence Questionnaire (RRQ) - Pediatrics |
Publications
There are no publications listed for this protocol.