Protocol - Recovery and Recurrence Questionnaire (RRQ) - Pediatrics

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

This protocol is freely available; permission not required for use.

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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 Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
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_Thinking_Behavior
	PX820702010401	Does your child have difficulty with his/her more thinking or behavior? 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_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_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_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_New_Clinical_Symptoms
	PX820702030301	Describe the new clinical symptoms at the more time of the recurrence: 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_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_RightSide_Face_Body
	PX820702010104	Right side face or body	N/A
PX820702_FunctionalityAfterStrokePediatrics_Seizures_Discharged
	PX820702040301	Seizures	N/A
PX820702_FunctionalityAfterStrokePediatrics_Stroke_TIA_BloodClotType
	PX820702030102	If yes, which type?	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_Treatment_Beginning_Episode
	PX820702030601	What stroke treatment was he/she on at the more beginning of the episode? show less	N/A

SCD Neurology, Quality of Life, and Health Services

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

Protocol - Recovery and Recurrence Questionnaire (RRQ) - Pediatrics

Related Protocols:

Essential Protocols:

Description

Specific Instructions

Availability

Protocol

Personnel and Training Required

Equipment Needs

Requirements

Mode of Administration

Lifestage

Participants

Selection Rationale

Language

Standards

Derived Variables

Process and Review

Protocol Name from Source

Source

General References

Protocol ID

Variables

Measure Name

Release Date

Definition

Purpose

Keywords

Measure Protocols