Cameron N. McIntosh; Sarah Connor Gorber; Julie Bernier;

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Task Force on the Development of a Task Force on the Development of a Common Instrument to Measure Health States:Common Instrument to Measure Health States:

Measuring Social Relationships (plus Communication)Measuring Social Relationships (plus Communication)

Cameron N. McIntosh; Sarah Connor Gorber; Julie Bernier; Cameron N. McIntosh; Sarah Connor Gorber; Julie Bernier;

Jean-Marie Berthelot; Michael C. Wolfson Jean-Marie Berthelot; Michael C. Wolfson

Statistics CanadaStatistics Canada

Ottawa, Ontario, CanadaOttawa, Ontario, Canada

Joint UNECE/WHO/Eurostat Meeting on the Measurement of Joint UNECE/WHO/Eurostat Meeting on the Measurement of Health Status (Budapest, Hungary, 14-16 November 2005)Health Status (Budapest, Hungary, 14-16 November 2005)

Working Paper No.3 Add.622 November 2005

STATISTICAL COMMISSION and STATISTICAL OFFICE OF THEUN ECONOMIC COMMISSION FOR EUROPEAN COMMUNITIESEUROPE (EUROSTAT) CONFERENCE OF EUROPEAN WORLD HEALTHSTATISTICIANS ORGANIZATION (WHO)

Joint UNECE/WHO/Eurostat Meetingon the Measurement of Health Status (Budapest, Hungary, 14-16 November 2005) Session 3-Invited paper

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Conceptual Issues in Measuring Social RelationshipsConceptual Issues in Measuring Social Relationships

are social relationships part of one’s health state, or determinants are social relationships part of one’s health state, or determinants and consequences of it?and consequences of it?

““within-the-skin” approach limits health state measurement to within-the-skin” approach limits health state measurement to physical and mental domains; social relationships are “outside-the-physical and mental domains; social relationships are “outside-the-skin”, and so to measure them as part of one’s health state would skin”, and so to measure them as part of one’s health state would lead to double-counting (e.g., HUI3)lead to double-counting (e.g., HUI3)

another perspective is more in line with the WHO’s classic definition another perspective is more in line with the WHO’s classic definition of health as encompassing physical, mental, and social well-being of health as encompassing physical, mental, and social well-being (e.g., EQ-5D)(e.g., EQ-5D)

How might we bridge these two perspectives? How might we bridge these two perspectives?

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could attempt to measure social relationships in terms of capacity could attempt to measure social relationships in terms of capacity rather than realizationrather than realization

most instruments measure the impact of health states on social most instruments measure the impact of health states on social relationships, for example (SF-36)relationships, for example (SF-36)

How much of the time, How much of the time, during the past monthduring the past month, has your , has your health limited health limited your social activitiesyour social activities (like visiting with friends or close relatives)?” (like visiting with friends or close relatives)?”

1 All of the time 1 All of the time

2 Most of the time2 Most of the time

3 A good bit of the time3 A good bit of the time

4 Some of the time4 Some of the time

5 A little of the time5 A little of the time

6 None of the time6 None of the time

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WHS module treated social relationships more as part of one’s WHS module treated social relationships more as part of one’s health state, rather than as an outcome: health state, rather than as an outcome:

“ “Overall in the last 30 days, how much difficulty did you have with Overall in the last 30 days, how much difficulty did you have with personal relationships or participation in the community?”personal relationships or participation in the community?”

None Mild Moderate Severe Extreme/Cannot doNone Mild Moderate Severe Extreme/Cannot do

The task force also aimed at measuring social relationships as an The task force also aimed at measuring social relationships as an actual domain of healthactual domain of health

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Proposed Items for Social Relationships: Set AProposed Items for Social Relationships: Set A

PreamblePreamble: : “Now I am going to ask you a couple of general “Now I am going to ask you a couple of general questions about [your/his/her] social relationships. When answering questions about [your/his/her] social relationships. When answering these questions, I would like you to try and think about [your/his/her] these questions, I would like you to try and think about [your/his/her] social relationships with all of the people [you/he/she] meet[s] and social relationships with all of the people [you/he/she] meet[s] and talk[s] to in [your/his/her] daily life.” talk[s] to in [your/his/her] daily life.”

SOCREL-1A. SOCREL-1A. First, gFirst, generally speaking,enerally speaking, how much difficulty how much difficulty [do/does] [you/he/she] have in forming and maintaining social [do/does] [you/he/she] have in forming and maintaining social relationships? relationships?

[INTERVIEWER: Read categories to respondent][INTERVIEWER: Read categories to respondent]

1 no difficulty 1 no difficulty

2 a little bit of difficulty2 a little bit of difficulty

3 quite a bit of difficulty3 quite a bit of difficulty

4 a great deal of difficulty4 a great deal of difficulty

5 complete difficulty/unable to do it at all5 complete difficulty/unable to do it at all

Don’t Know, Refusal (Go to next question)Don’t Know, Refusal (Go to next question)

Relevant ICF Category: d7200 (Forming relationships)Relevant ICF Category: d7200 (Forming relationships)

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Proposed Items for Social Relationships: Set BProposed Items for Social Relationships: Set B

PreamblePreamble: “Now I am going to ask you a couple of general : “Now I am going to ask you a couple of general questions about [your/his/her] social relationships during the past questions about [your/his/her] social relationships during the past ___ days. When answering these questions, please try and focus ___ days. When answering these questions, please try and focus only on [your/his/her] life during the past ___ days.only on [your/his/her] life during the past ___ days.

SOCREL-1B. Overall during the past ___ days, how much difficulty SOCREL-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social [did] [you/he/she] have in forming and maintaining social relationships? relationships?









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Proposed Items for Social Relationships: Set CProposed Items for Social Relationships: Set C

Preamble: “Now I am going to ask you a couple of general questions about Preamble: “Now I am going to ask you a couple of general questions about [your/his/her] social relationships during the past ___ days. For answering [your/his/her] social relationships during the past ___ days. For answering each of these questions, you will be asked to use a rating scale that goes each of these questions, you will be asked to use a rating scale that goes from 0 to 100. 0 means that [you/he/she] had complete difficulty with social from 0 to 100. 0 means that [you/he/she] had complete difficulty with social relationships, and 100 means that you had no difficulty with social relationships, and 100 means that you had no difficulty with social relationships. When answering these questions, I would like you to try and relationships. When answering these questions, I would like you to try and think about [your/his/her] social relationships with all of the people think about [your/his/her] social relationships with all of the people [you/he/she] meet[s] and talk[s] to in [your/his/her] daily life.” Further, please [you/he/she] meet[s] and talk[s] to in [your/his/her] daily life.” Further, please try and focus only on [your/his/her] life during the past ___ days. try and focus only on [your/his/her] life during the past ___ days.

SOCREL-1C. Overall during the past ___ days, how much difficulty [did] SOCREL-1C. Overall during the past ___ days, how much difficulty [did]

[you/he/she] have in forming and maintaining social relationships? [you/he/she] have in forming and maintaining social relationships? [INTERVIEWER: Present scale to respondent and say: “Please choose the [INTERVIEWER: Present scale to respondent and say: “Please choose the

number from 0 to 100 that best describes how much difficulty [you/he/she] number from 0 to 100 that best describes how much difficulty [you/he/she] had with forming and maintaining social relationships over the past ___ had with forming and maintaining social relationships over the past ___ days”]days”]

completely unable to form and no difficulty forming andcompletely unable to form and no difficulty forming and maintain social relationships maintaining social relationships maintain social relationships maintaining social relationships |____________________________________________________||____________________________________________________| 00 100 100 Relevant ICF Category: d7200 (Forming relationships)Relevant ICF Category: d7200 (Forming relationships)

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Proposed Items for Social Relationships: FilterProposed Items for Social Relationships: Filter

SOCREL-1B-F. SOCREL-1B-F. Overall during the past ___ days, did you have any Overall during the past ___ days, did you have any difficulty [did] [you/he/she] have in forming and maintaining social difficulty [did] [you/he/she] have in forming and maintaining social relationships? relationships?


1 no 1 no

2 yes2 yes

Yes (Go to question SOC-1B)Yes (Go to question SOC-1B)

No (Go to question SOC-2B-F)No (Go to question SOC-2B-F)

Don’t Know, Refusal (Go to question COG-2B-F)Don’t Know, Refusal (Go to question COG-2B-F)


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Proposed Items for Social Relationships: Proposed Items for Social Relationships: Follow-up to Filter QuestionFollow-up to Filter Question

SOCREL-1B. Overall during the past ___ days, how much difficulty SOCREL-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social [did] [you/he/she] have in forming and maintaining social relationships? relationships?








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Proposed Items for Social Relationships (Communication): Proposed Items for Social Relationships (Communication): Set ASet A

COMM-1A. Second, how much difficulty [do/does] [you/he/she] COMM-1A. Second, how much difficulty [do/does] [you/he/she] usually have in making [yourself/himself/herself] understood in usually have in making [yourself/himself/herself] understood in conversations? conversations?








Relevant ICF Categories: d330 (Speaking); d335 (Producing Non-Relevant ICF Categories: d330 (Speaking); d335 (Producing Non-verbal Messages); could also cover d340 (Producing messages in verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation)formal sign language); d350 (Conversation)

1111

Proposed Items for Social Relationships (Communication): Proposed Items for Social Relationships (Communication): Set BSet B

COMM-1B. Overall during the past ___ days, how much difficulty COMM-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in making [yourself/himself/herself] [did] [you/he/she] have in making [yourself/himself/herself] understood in conversations? understood in conversations?









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Proposed Items for Social Relationships (Communication): Proposed Items for Social Relationships (Communication): Set CSet C

COMM-1C. COMM-1C. Overall during the past ___ days, how much difficulty [did] Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? [you/he/she] have in forming and maintaining social relationships?

[INTERVIEWER: Present scale to respondent and say: “Please choose the [INTERVIEWER: Present scale to respondent and say: “Please choose the number from 0 to 100 that best describes how much difficulty [you/he/she] number from 0 to 100 that best describes how much difficulty [you/he/she] had with making yourself/himself/herself] understood in conversations, over had with making yourself/himself/herself] understood in conversations, over the past ___ days”]the past ___ days”]

completely unable to make no difficulty making completely unable to make no difficulty making [myself/himself/herself] [myself/himself/herself] [myself/himself/herself] [myself/himself/herself]

understood in conversations understood in conversations understood in conversations understood in conversations |________________________________________________||________________________________________________| 00 100 100

Relevant ICF Categories: d330 (Speaking); d335 (Producing Non-verbal Relevant ICF Categories: d330 (Speaking); d335 (Producing Non-verbal Messages); could also cover d340 (Producing messages in formal sign Messages); could also cover d340 (Producing messages in formal sign

language); d350 (Conversation)language); d350 (Conversation)

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Proposed Items for Social Relationships (Communication): Proposed Items for Social Relationships (Communication): FilterFilter

COMM-1B-F. COMM-1B-F. Overall during the past ___ days, did you have any difficulty [did] Overall during the past ___ days, did you have any difficulty [did] [you/he/she] in making [yourself/himself/herself] understood in conversations? [you/he/she] in making [yourself/himself/herself] understood in conversations?


1 no 1 no

2 yes2 yes

Yes (Go to question COMM-1B)Yes (Go to question COMM-1B)

No (Go to question COG-2B-F)No (Go to question COG-2B-F)

Don’t Know, Refusal (Go to question COG-2B-F)Don’t Know, Refusal (Go to question COG-2B-F)

Relevant ICF Categories: d330 (Speaking); d335 (Producing Non verbal Relevant ICF Categories: d330 (Speaking); d335 (Producing Non verbal Messages); could also cover d340 (Producing messages in formal sign language); Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation)d350 (Conversation)

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Proposed Items for Social Relationships: Proposed Items for Social Relationships: Follow-up to Filter QuestionFollow-up to Filter Question

COMM-1B. COMM-1B. Overall during the past ___ days, how much difficulty Overall during the past ___ days, how much difficulty [did] [you/he/she] in making [yourself/himself/herself] understood in [did] [you/he/she] in making [yourself/himself/herself] understood in conversations? conversations?








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Broad QuestionsBroad Questions What are your views on measuring Social Relationships in terms of What are your views on measuring Social Relationships in terms of

capacity?capacity?

Is it useful to have the CommuniIs it useful to have the Communication item?cation item?

Are any of the three approaches (i.e., no recall period, specific recall Are any of the three approaches (i.e., no recall period, specific recall period, VAS) obviously superior, or is it worthwhile to subject all period, VAS) obviously superior, or is it worthwhile to subject all three to cognitive testing?three to cognitive testing?

Is it worthwhile to use filter questions?Is it worthwhile to use filter questions?

Documents

Cameron N. McIntosh; Sarah Connor Gorber; Julie Bernier;