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Protocol - Stroke Impact Scale (SIS) - Adults

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Description:

The Stroke Impact Scale (SIS) includes 59 proxy- or self-report items in 8 domains that assess multidimensional stroke outcomes. Items 1(a-d) measure strength. Items 2(a-g) measure memory and thinking. Items 3(a-I) measure emotions. Items 4(a-g) measure ease or difficulty of communication. Items 5(a-j) measure activities of daily living/instrumental activities of daily living (ADL/IADL). Items 6(a-I) measure mobility. Items 7(a-e) measure hand function. Items 8(a-h) measure participation/role function. Item responses are scored on a 5-point Likert-style scale. A score of 1 = an inability to complete the item and a score of 5 = no difficulty experienced at all. A standardized score ranging from 0 to 100 is calculated for all domains, with higher scores indicating a higher quality of life. An extra question on stroke recovery asks that the client rate on a scale from 0 to 100 how much the client feels that he/she has recovered from his/her stroke, where 0 = "no recovery" and 100 = "full recovery."

Protocol:

Stroke Impact Scale

VERSION 3.0

The purpose of this questionnaire is to evaluate how stroke has impacted your health and life. We want to know from YOUR POINT OF VIEW how stroke has affected you. We will ask you questions about impairments and disabilities caused by your stroke, as well as how stroke has affected your quality of life. Finally, we will ask you to rate how much you think you have recovered from your stroke.

These questions are about the physical problems which may have occurred as a result of your stroke.

1. In the past week, how would you rate the strength of your....

A lot of strength

Quite a bit of strength

Some strength

A little strength

No strength at all

a. Arm that was most affected by your stroke?

5

4

3

2

1

b. Grip of your hand that was most affected by your stroke?

5

4

3

2

1

c. Leg that was most affected by your stroke?

5

4

3

2

1

d. Foot/ankle that was most affected by your stroke?

5

4

3

2

1

These questions are about your memory and thinking.

2. In the past week, how difficult was it for you to...

Not difficult at all

A little difficult

Somewhat difficult

Very difficult

Extremely difficult

a. Remember things that people just told you?

5

4

3

2

1

b. Remember things that happened the day before?

5

4

3

2

1

c. Remember to do things (e.g. keep scheduled appointments or take medication)?

5

4

3

2

1

d. Remember the day of the week?

5

4

3

2

1

e. Concentrate?

5

4

3

2

1

f. Think quickly?

5

4

3

2

1

g. Solve everyday problems?

5

4

3

2

1

These questions are about how you feel, about changes in your mood and about your ability to control your emotions since your stroke.

3. In the past week, how often did you...

None of the time

A little of the time

Some of the time

Most of the time

All of the time

a. Feel sad?

5

4

3

2

1

b. Feel that there is nobody you are close to?

5

4

3

2

1

c. Feel that you are a burden to others?

5

4

3

2

1

d. Feel that you have nothing to look forward to?

5

4

3

2

1

e. Blame yourself for mistakes that you made?

5

4

3

2

1

f. Enjoy things as much as ever?

5

4

3

2

1

g. Feel quite nervous?

5

4

3

2

1

h. Feel that life is worth living?

5

4

3

2

1

i. Smile and laugh at least once a day?

5

4

3

2

1

The following questions are about your ability to communicate with other people, as well as your ability to understand what you read and what you hear in a conversation.

4. In the past week, how difficult was it to...

Not difficult at all

A little difficult

Somewhat difficult

Very difficult

Extremely difficult

a. Say the name of someone who was in front of you?

5

4

3

2

1

b. Understand what was being said to you in a conversation?

5

4

3

2

1

c. Reply to questions?

5

4

3

2

1

d. Correctly name objects?

5

4

3

2

1

e. Participate in a conversation with a group of people?

5

4

3

2

1

f. Have a conversation on the telephone?

5

4

3

2

1

g. Call another person on the telephone, including selecting the correct phone number and dialing?

5

4

3

2

1

The following questions ask about activities you might do during a typical day.

5. In the past 2 weeks, how difficult was it to...

Not difficult at all

A little difficult

Somewhat difficult

Very difficult

Could not do at all

a. Cut your food with a knife and fork?

5

4

3

2

1

b. Dress the top part of your body?

5

4

3

2

1

c. Bathe yourself?

5

4

3

2

1

d. Clip your toenails?

5

4

3

2

1

e. Get to the toilet on time?

5

4

3

2

1

f. Control your bladder (not have an accident)?

5

4

3

2

1

g. Control your bowels (not have an accident)?

5

4

3

2

1

h. Do light household tasks/chores (e.g. dust, make a bed, take out garbage, do the dishes)?

5

4

3

2

1

i. Go shopping?

5

4

3

2

1

j. Do heavy household chores (e.g. vacuum, laundry or yard work)?

5

4

3

2

1

The following questions are about your ability to be mobile at home and in the community.

6. In the past 2 weeks, how difficult was it to...

Not difficult at all

A little difficult

Somewhat difficult

Very difficult

Could not do at all

a. Stay sitting without losing your balance?

5

4

3

2

1

b. Stay standing without losing your balance?

5

4

3

2

1

c. Walk without losing your balance?

5

4

3

2

1

d. Move from a bed to a chair?

5

4

3

2

1

e. Walk one block?

5

4

3

2

1

f. Walk fast?

5

4

3

2

1

g. Climb one flight of stairs?

5

4

3

2

1

h. Climb several flights of stairs?

5

4

3

2

1

i. Get in and out of a car?

5

4

3

2

1

The following questions are about your ability to use your hand that was MOST AFFECTED by your stroke.

7. In the past 2 weeks, how difficult was it to use your hand that was most affected by your stroke to...

Not difficult at all

A little difficult

Somewhat difficult

Very difficult

Could not do at all

a. Carry heavy objects (e.g. bag of groceries)?

5

4

3

2

1

b. Turn a doorknob?

5

4

3

2

1

c. Open a can or jar?

5

4

3

2

1

d. Tie a shoe lace?

5

4

3

2

1

e. Pick up a dime?

5

4

3

2

1

The following questions are about how stroke has affected your ability to participate in the activities that you usually do, things that are meaningful to you and help you to find purpose in life.

8. During the past 4 weeks, how much of the time have you been limited in...

None of the time

A little of the time

Some of the time

Most of the time

All of the time

a. Your work (paid, voluntary or other)

5

4

3

2

1

b. Your social activities?

5

4

3

2

1

c. Quiet recreation (crafts, reading)?

5

4

3

2

1

d. Active recreation (sports, outings, travel)?

5

4

3

2

1

e. Your role as a family member and/or friend?

5

4

3

2

1

f. Your participation in spiritual or religious activities?

5

4

3

2

1

g. Your ability to control your life as you wish?

5

4

3

2

1

h. Your ability to help others?

5

4

3

2

1

9. Stroke Recovery

On a scale of 0 to 100, with 100 representing full recovery and 0 representing no recovery, how much have you recovered from your stroke?

_______

100 Full Recovery

____

_______

90

____

_______

80

____

_______

70

____

_______

60

____

_______

50

____

_______

40

____

_______

30

____

_______

20

____

_______

10

____

_______

0 No Recovery

Scoring: Each item is rated in a 5-point Likert scale in terms of the difficulty the patient has experienced in completing each item. A score of 1 = an inability to complete the item and a score of 5 = no difficulty experienced at all. Summative scores are generated for each domain. Domain scores range from 0-100.

The Stroke Impact Scale (SIS) is scored in the following way, for each domain:

Transformed Scale = [(Actual raw score - lowest possible raw score) / Possible raw score range] x 100

Three items in the emotion domain, 3f, 3h, and 3i, are reverse-scored, i.e., 1 becomes 5, 2 becomes 4, 3 remains the same, 4 becomes 2, and 5 becomes 1, prior to manual calculation. For these items, use the following equation to compute the individual’s score:

6 - individual’s rating = item score

The last item assesses the participant’s overall perception of recovery and is presented in the form of a visual analog scale from 0 to 100, where 0 = "no recovery" and 100 = "full recovery."

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:

Adult

Participants:

Adults who have had a stroke, ages 18 and older.

Specific Instructions:

The Stroke Impact Scale (SIS) should be used with caution in individuals with mild impairment as the items in the Communication, Memory, and Emotion domains are considered easy and only capture limitations in the most impaired individuals.

Selection Rationale

The Stroke Impact Scale (SIS), Version 3.0 is a reliable and valid proxy- or self-administered questionnaire that is widely used to measure the quality of life in stroke survivors. In contrast to more generic quality of life instruments, the SIS is more sensitive to short-term changes in health status after a stroke.

Language

Danish, Dutch, Dutch, English, French, German, Greek, Hebrew, Italian, Japanese, Norwegian, Portuguese, Russian, Spanish, Swedish, Tagalog, Thai, Turkish

Standards
StandardNameIDSource
Common Data Elements (CDE) Stroke Impact Scale Assessment Scale 4924280 CDE Browser
Derived Variables

None

Process and Review

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

Source

Duncan, P. W., Bode, R. K., Min Lai, S., & Perera, S. (2003). Rasch analysis of a new stroke-specific outcome scale: The Stroke Impact Scale. Archives of Physical Medicine and Rehabilitation 84(7), 950-963.

General References

Duncan, P. W., Wallace, D., Lai, S. M., Johnson, D., Embretson, S., & Laster, L. J. (1999). The Stroke Impact Scale version 2.0. Evaluation of reliability, validity, and sensitivity to change. Stroke, 30(10), 2131-2140.

Lai, S. M., Studenski, S., Duncan P. W., & Perera, S. (2002). Persisting consequences of stroke measured by the Stroke Impact Scale. Stroke, 33(7), 1840-1844.

Duncan, P. W., Lai, S. M., Tyler, D., Perera, S., Reker, D. M., & Studenski, S. (2002). Evaluation of proxy response to the Stroke Impact Scale. Stroke, 33(11), 2593-2599.

Lai, S. M., Perera, S., Duncan, P. W., & Bode, R. (2003). Physical and social functioning after stroke: Comparison of the Stroke Impact Scale and Short Form-36. Stroke, 34(2), 488-493.

Duncan, P. W., Reker, D. M., Horner, R. D., Samsa, G. P., Hoenig, H., LaClair, B. J., & Dudley, T. K. (2002). Performance of a mail-administered version of a stroke-specific outcome measure, the Stroke Impact Scale. Clinical Rehabilitation 16(5), 493-505.

Kwon, S., Duncan, P., Studenski, S., Perera, S., Lai, S. M.,& Reker, D. (2006). Measuring stroke impact with SIS: Construct validity of SIS telephone administration. Quality of Life Research 15(3), 367-376.

Duncan, P. W., Lai, S. M., Bode, R. K., Perea, S., & DeRosa, J. T. (2003). Stroke Impact Scale-16: A brief assessment of physical function. Neurology, 60, 291-296.

Protocol ID:

820701

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_Blame_Mistakes PX820701030500 In the past week, how often did you blame yourself for mistakes that you made? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_EnjoyThings PX820701030600 In the past week, how often did you enjoy things as much as ever? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_FeelBurden_Others PX820701030300 In the past week, how often did you feel that you are a burden to others? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_FeelNervous PX820701030700 In the past week, how often did you feel quite nervous? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_FeelNobody_Close PX820701030200 In the past week, how often did you feel that there is nobody you are close to? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_FeelNothing_Forward PX820701030400 In the past week, how often did you feel that you have nothing to look forward to? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_FeelSad PX820701030100 In the past week, how often did you feel sad? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_FeelWorth_Living PX820701030800 In the past week, how often did you feel that life is worth living? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Did_Past7days_Smile_Laugh PX820701030900 In the past week, how often did you smile and laugh at least once a day? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Hand_Past2weeks_CarryObjects PX820701070100 In the past 2 weeks, how difficult was it to use your hand that was most affected by your stroke to carry heavy objects (e.g., bag of groceries)? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Hand_Past2weeks_OpenCanJar PX820701070300 In the past 2 weeks, how difficult was it to use your hand that was most affected by your stroke to open a can or jar? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Hand_Past2weeks_PickUpDime PX820701070500 In the past 2 weeks, how difficult was it to use your hand that was most affected by your stroke to pick up a dime? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Hand_Past2weeks_TieShoeLace PX820701070400 In the past 2 weeks, how difficult was it to use your hand that was most affected by your stroke to tie a shoe lace? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Hand_Past2weeks_TurnDoorknob PX820701070200 In the past 2 weeks, how difficult was it to use your hand that was most affected by your stroke to turn a doorknob? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Bathe_Yourself PX820701050300 In the past 2 weeks, how difficult was it to bathe yourself? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Climb_OneFlightStairs PX820701060700 In the past 2 weeks, how difficult was it to climb one flight of stairs? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Climb_SeveralFlightsStairs PX820701060800 In the past 2 weeks, how difficult was it to climb several flights of stairs? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_ClipToenails PX820701050400 In the past 2 weeks, how difficult was it to clip your toenails? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Control_Bladder PX820701050600 In the past 2 weeks, how difficult was it to control your bladder (not have an accident)? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Control_Bowels PX820701050700 In the past 2 weeks, how difficult was it to control your bowels (not have an accident)? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Cut_Food PX820701050100 In the past 2 weeks, how difficult was it to cut your food with a knife and fork? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_DressTop_Body PX820701050200 In the past 2 weeks, how difficult was it to dress the top part of your body? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_GetInOut_Car PX820701060900 In the past 2 weeks, how difficult was it to get in and out of a car? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Go_Shopping PX820701050900 In the past 2 weeks, how difficult was it to go shopping? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Heavy_Chores PX820701051000 In the past 2 weeks, how difficult was it to do heavy household chores (e.g., vacuum, laundry or yard work)? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_LightChores_Tasks PX820701050800 In the past 2 weeks, how difficult was it to do light household tasks/chores (e.g., dust, make a bed, take out garbage, do the dishes)? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_MoveBedTo_Chair PX820701060400 In the past 2 weeks, how difficult was it to move from a bed to a chair? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Stay_Sitting PX820701060100 In the past 2 weeks, how difficult was it to stay sitting without losing your balance? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Stay_Standing PX820701060200 In the past 2 weeks, how difficult was it to stay standing without losing your balance? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_ToiletOn_Time PX820701050500 In the past 2 weeks, how difficult was it to get to the toilet on time? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_WalkWithout_LosingBalance PX820701060300 In the past 2 weeks, how difficult was it to walk without losing your balance? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Walk_Fast PX820701060600 In the past 2 weeks, how difficult was it to walk fast? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past2weeks_Walk_OneBlock PX820701060500 In the past 2 weeks, how difficult was it to walk one block? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_CallPerson_Telephone PX820701040700 In the past week, how difficult was it to call another person on the telephone, including selecting the correct phone number and dialing? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Concentrate PX820701020500 In the past week, how difficult was it for you to concentrate? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_HaveConversation_Telephone PX820701040600 In the past week, how difficult was it to have a conversation on the telephone? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Name_Objects PX820701040400 In the past week, how difficult was it to correctly name objects? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Name_Someone PX820701040100 In the past week, how difficult was it to say the name of someone who was in front of you? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_ParticipateIn_Conversation PX820701040500 In the past week, how difficult was it to participate in a conversation with a group of people? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Problems PX820701020700 In the past week, how difficult was it for you to solve everyday problems? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Remember_DoThings PX820701020300 In the past week, how difficult was it for you to remember to do things (e.g., keep scheduled appointments or take medication)? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Remember_PreviousDay PX820701020200 In the past week, how difficult was it for you to remember things that happened the day before? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Remember_Things PX820701020100 In the past week, how difficult was it for you to remember things that people just told you? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Remember_Weekday PX820701020400 In the past week, how difficult was it for you to remember the day of the week? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_ReplyTo_Questions PX820701040300 In the past week, how difficult was it to reply to questions? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Think PX820701020600 In the past week, how difficult was it for you to think quickly? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Difficult_Past7days_Understand_Conversation PX820701040200 In the past week, how difficult was it to understand what was being said to you in a conversation? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Representing_Stroke_Recovery PX820701090000 On a scale of 0 to 100, with 100 representing full recovery and 0 representing no recovery, how much have you recovered from your stroke? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Strength_Past7days_Arm PX820701010100 In the past week, how would you rate the strength of your arm that was most affected by your stroke? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Strength_Past7days_Foot_Ankle PX820701010400 In the past week, how would you rate the strength of your foot/ankle that was most affected by your stroke? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Strength_Past7days_Grip PX820701010200 In the past week, how would you rate the strength of your grip of your hand that was most affected by your stroke? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_Strength_Past7days_Leg PX820701010300 In the past week, how would you rate the strength of your leg that was most affected by your stroke? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_TimeLimited_Past4weeks_Active_Recreation PX820701080400 During the past 4 weeks, how much of the time have you been limited in active recreation (sports, outings, travel)? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_TimeLimited_Past4weeks_Control_Life PX820701080700 During the past 4 weeks, how much of the time have you been limited in your ability to control your life as you wish? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_TimeLimited_Past4weeks_Help_Others PX820701080800 During the past 4 weeks, how much of the time have you been limited in your ability to help others? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_TimeLimited_Past4weeks_Quiet_Recreation PX820701080300 During the past 4 weeks, how much of the time have you been limited in quiet recreation (crafts, reading)? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_TimeLimited_Past4weeks_Role_FamilyFriend PX820701080500 During the past 4 weeks, how much of the time have you been limited in your role as a family member and/or friend? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_TimeLimited_Past4weeks_Social_Activities PX820701080200 During the past 4 weeks, how much of the time have you been limited in your social activities? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_TimeLimited_Past4weeks_SpiritualReligous_Activities PX820701080600 During the past 4 weeks, how much of the time have you been limited in your participation in spiritual or religious activities? 4 N/A
PX820701_FunctionalityAfterStrokeAdult_TimeLimited_Past4weeks_Work PX820701080100 During the past 4 weeks, how much of the time have you been limited in your work (paid, voluntary or other)? 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