Proxy
Stroke Impact Scale
Version 3.0
GUIDE FOR ADMINISTRATION
Historical Overview
The Stroke Impact Scale, or SIS was created to assess changes in impairments, disabilities and handicaps following a stroke. The measure was designed for repeated administration to track change over time, and was created to be used both in clinical and research settings.
The Proxy version of the Stroke Impact Scale has been adapted so that another individual who knows the stroke patient well may answer questions for and in the name of the patient. This information will, ideally, be utilized when a patient is unable to speak for themselves.
The items within the Stroke Impact Scale were derived specifically from the feedback of stroke patients and their caregivers, who identified physical, mental, and emotional changes that were particularly troublesome and contributed to a change in quality of life. We are indebted to these individuals for their willingness to share their experiences so that others with stroke could benefit.
General Instructions
The Proxy version of the Stroke Impact Scale (SIS) is an interviewer-administered measure. Prior to beginning the SIS, basic demographic information on the respondent is gathered, and mental status is determined using the Folstein Mini-Mental (Folstein MF, Folstein SE, McHugh PR: Mini-Mental State. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res, 12: 189-198, 1975). The respondent must be able to follow a 3-step command. Analysis is underway to determine an appropriate cutoff in Mini-Mental score below which the SIS should not be administered. Although there is no specific cutoff presently, a score of less than 16 may be used. The value of Proxy response when patient response is inappropriate is currently being evaluated.
Information about the frequency of contact with the patient (number of days per week, number of hours of contact each day) is should be determined and the Proxy should rate how well s/he feels s/he knows the patient.
The purpose statement must be read prior to administration. It is important to tell the respondent that the information is to be based on his or her point of view.
Response sheets in large print should provided with the instrument, so that the respondent may see, as well as hear, the choice of responses for each question. The respondent may either answer with the number or the text associated with the number (eg. “5” or “Not difficult at all”) for an individual question. If the respondent uses the number, it is important for the interviewer to verify the answer by stating the corresponding text response. The interviewer displays the sheet appropriate for that particular set of question, and after each question must read all five choices. Questions are listed in sections, or domains, with a general description of the type of questions that will follow (eg. “These questions are about the physical problems which may have occurred as a result of the stroke”). Each group of questions is then given a statement with a reference to a specific time period (eg. “In the past week how would you rate the strength of his/her…”). The statement must be repeated before each individual question. Within the measure the time period changes from one week, to two weeks, to four weeks. It is therefore important to emphasize the change in the time period being assessed for the specific group of questions.
Scoring
The Proxy SIS uses the scoring algorithm of the SF-36 (Stuart AL, Ware JE: Measuring functioning and well-being: the Medical Outcomes Study approach. Durham, North Carolina. Duke University Press, 1992: 375-376). The Proxy SIS is scored in the following way, for each domain:
Item Clarifications
Specific item clarifications, indicated by question number:
(1) If proxy says “Patient doesn’t have an affected side”, then instruct them to score using the perceived weaker side. If they still insist there is no affected, or weaker, side instruct them to score using the patient’s dominant side. (6/23/99)
(4) If proxy says patient does not do any or all of the items listed, code item(s) as Extremely Dificult.
(Item f) If patient does not call but is handed the phone this is OK.
(Item g) If patient cannot hold a phone book, if they can read it this is OK. This item addresses whether the patient is able to initiate a phone call, look up the number, and dial this number correctly.
(5) If proxy says patient does not do any or all of the items listed, code item(s) as Cannot do at all.
(Item a) If person is on pureed food, even if they feel they could cut the food, code as Cannot do at All (1/5/98).
(Item c) Bathing oneself does not include getting into the tub.
(Item e) This question is associated with the patient’s movement. Does the person have the physical ability to get to the bathroom quickly enough?
(Item f) Losing a little urine/dribbling is considered an accident.
If person has intermittent catheter and is having no leaking problems code them as per report. (1/5/98)
If person has an in-dwelling Foley catheter, code as Cannot do at all. (1/5/98)
(Item g) Constipation is not counted here, person has to have an accident.
(Item i) “Shopping” means any type of shopping and does not include driving.
(6) If proxy indicates that the patient hasn’t done any of the items in the past two weeks code as Cannot do at all.
(Item h) If proxy says patient hasn’t “climbed several flights of stairs” in two weeks, they may be prompted by saying “has s/he gone up and down one flight of stairs a couple of times in a row.” If they still say the patient has not done it then they must be coded as Cannot do at all.(7/21/99)
(Item i) If the proxy wants to know “what kind of car” say “the car the patient rides in most.” (9/99)
(7) If proxy says “Patient doesn’t have an affected side,” then instruct them to score using the perceived weaker side. If they still insist there is no affected, or weaker, side instruct them to score using the patient’s dominant side. (6/23/99)
(Item a) If the proxy says the patient has not been to the grocery store say “has s/he carried anything heavy in that hand.”
(Item d) This item is to tie a shoelace/bow using both hands.
(8) If proxy says patient does not do any of the specific items (and has never done), code interference as None of the time.
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The University of Kansas Medical Center
