1 Task Force on the Development of a Common Instrument to Measure Health States: Measuring Social Relationships (plus Communication) Cameron N. McIntosh; Sarah Connor Gorber; Julie Bernier; Jean-Marie Berthelot; Michael C. Wolfson Statistics Canada Ottawa, Ontario, Canada Joint UNECE/WHO/Eurostat Meeting on the Measurement of Health Status (Budapest, Hungary, November 2005) Working Paper No.3 Add.6 22 November 2005 STATISTICAL COMMISSION andSTATISTICAL OFFICE OF THE UN ECONOMIC COMMISSION FOREUROPEAN COMMUNITIES EUROPE (EUROSTAT) CONFERENCE OF EUROPEAN WORLD HEALTH STATISTICIANS ORGANIZATION (WHO) Joint UNECE/WHO/Eurostat Meeting on the Measurement of Health Status (Budapest, Hungary, November 2005) Session 3-Invited paper

2 Conceptual Issues in Measuring Social Relationships Conceptual Issues in Measuring Social Relationships are social relationships part of one’s health state, or determinants and consequences of it? are social relationships part of one’s health state, or determinants and consequences of it? “within-the-skin” approach limits health state measurement to physical and mental domains; social relationships are “outside-the- skin”, and so to measure them as part of one’s health state would lead to double-counting (e.g., HUI3) “within-the-skin” approach limits health state measurement to physical and mental domains; social relationships are “outside-the- skin”, and so to measure them as part of one’s health state would lead to double-counting (e.g., HUI3) another perspective is more in line with the WHO’s classic definition of health as encompassing physical, mental, and social well-being (e.g., EQ-5D) another perspective is more in line with the WHO’s classic definition of health as encompassing physical, mental, and social well-being (e.g., EQ-5D) How might we bridge these two perspectives? How might we bridge these two perspectives?

3 Conceptual Issues in Measuring Social Relationships Conceptual Issues in Measuring Social Relationships could attempt to measure social relationships in terms of capacity rather than realization could attempt to measure social relationships in terms of capacity rather than realization most instruments measure the impact of health states on social relationships, for example (SF-36) most instruments measure the impact of health states on social relationships, for example (SF-36) How much of the time, during the past month, has your health limited your social activities (like visiting with friends or close relatives)?” How much of the time, during the past month, has your health limited your social activities (like visiting with friends or close relatives)?” 1 All of the time 1 All of the time 2 Most of the time 2 Most of the time 3 A good bit of the time 3 A good bit of the time 4 Some of the time 4 Some of the time 5 A little of the time 5 A little of the time 6 None of the time 6 None of the time

4 Conceptual Issues in Measuring Social Relationships Conceptual Issues in Measuring Social Relationships WHS module treated social relationships more as part of one’s health state, rather than as an outcome: WHS module treated social relationships more as part of one’s health state, rather than as an outcome: “Overall in the last 30 days, how much difficulty did you have with personal relationships or participation in the community?” “Overall in the last 30 days, how much difficulty did you have with personal relationships or participation in the community?” None Mild Moderate Severe Extreme/Cannot do None Mild Moderate Severe Extreme/Cannot do The task force also aimed at measuring social relationships as an actual domain of health The task force also aimed at measuring social relationships as an actual domain of health

5 Proposed Items for Social Relationships: Set A Preamble: “Now I am going to ask you a couple of general questions about [your/his/her] social relationships. When answering 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 talk[s] to in [your/his/her] daily life.” Preamble: “Now I am going to ask you a couple of general questions about [your/his/her] social relationships. When answering 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 talk[s] to in [your/his/her] daily life.” SOCREL-1A. First, generally speaking, how much difficulty [do/does] [you/he/she] have in forming and maintaining social relationships? SOCREL-1A. First, generally speaking, how much difficulty [do/does] [you/he/she] have in forming and maintaining social relationships? [INTERVIEWER: Read categories to respondent] [INTERVIEWER: Read categories to respondent] 1 no difficulty 1 no difficulty 2 a little bit of difficulty 2 a little bit of difficulty 3 quite a bit of difficulty 3 quite a bit of difficulty 4 a great deal of difficulty 4 a great deal of difficulty 5 complete difficulty/unable to do it at all 5 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)

6 Proposed Items for Social Relationships: Set B Preamble: “Now I am going to ask you a couple of general questions about [your/his/her] social relationships during the past ___ days. When answering these questions, please try and focus only on [your/his/her] life during the past ___ days. Preamble: “Now I am going to ask you a couple of general questions about [your/his/her] social relationships during the past ___ days. When answering these questions, please try and focus only on [your/his/her] life during the past ___ days. SOCREL-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? SOCREL-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? [INTERVIEWER: Read categories to respondent] [INTERVIEWER: Read categories to respondent] 1 no difficulty 1 no difficulty 2 a little bit of difficulty 2 a little bit of difficulty 3 quite a bit of difficulty 3 quite a bit of difficulty 4 a great deal of difficulty 4 a great deal of difficulty 5 complete difficulty/unable to do it at all 5 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)

7 Proposed Items for Social Relationships: Set C 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 each of these questions, you will be asked to use a rating scale that goes from 0 to means that [you/he/she] had complete 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 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 try and focus only on [your/his/her] life during the past ___ days. 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 each of these questions, you will be asked to use a rating scale that goes from 0 to means that [you/he/she] had complete 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 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 try and focus only on [your/his/her] life during the past ___ days. SOCREL-1C. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? SOCREL-1C. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? [INTERVIEWER: Present scale to respondent and say: “Please choose the number from 0 to 100 that best describes how much difficulty [you/he/she] had with forming and maintaining social relationships over the past ___ days”] [INTERVIEWER: Present scale to respondent and say: “Please choose the number from 0 to 100 that best describes how much difficulty [you/he/she] had with forming and maintaining social relationships over the past ___ days”] completely unable to form and no difficulty forming and completely unable to form and no difficulty forming and maintain social relationships maintaining social relationships maintain social relationships maintaining social relationships |____________________________________________________| |____________________________________________________| Relevant ICF Category: d7200 (Forming relationships) Relevant ICF Category: d7200 (Forming relationships)

8 Proposed Items for Social Relationships: Filter SOCREL-1B-F. Overall during the past ___ days, did you have any difficulty [did] [you/he/she] have in forming and maintaining social relationships? SOCREL-1B-F. Overall during the past ___ days, did you have any difficulty [did] [you/he/she] have in forming and maintaining social relationships? [INTERVIEWER: Read categories to respondent] [INTERVIEWER: Read categories to respondent] 1 no 1 no 2 yes 2 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) Relevant ICF Category: d7200 (Forming relationships) Relevant ICF Category: d7200 (Forming relationships)

9 Proposed Items for Social Relationships: Follow-up to Filter Question SOCREL-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? SOCREL-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? [INTERVIEWER: Read categories to respondent] [INTERVIEWER: Read categories to respondent] 1 a little bit of difficulty 1 a little bit of difficulty 2 quite a bit of difficulty 2 quite a bit of difficulty 3 a great deal of difficulty 3 a great deal of difficulty 4 complete difficulty/unable to do it at all 4 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)

10 Proposed Items for Social Relationships (Communication): Set A COMM-1A. Second, how much difficulty [do/does] [you/he/she] usually have in making [yourself/himself/herself] understood in conversations? COMM-1A. Second, how much difficulty [do/does] [you/he/she] usually have in making [yourself/himself/herself] understood in conversations? [INTERVIEWER: Read categories to respondent] [INTERVIEWER: Read categories to respondent] 1 no difficulty 1 no difficulty 2 a little bit of difficulty 2 a little bit of difficulty 3 quite a bit of difficulty 3 quite a bit of difficulty 4 a great deal of difficulty 4 a great deal of difficulty 5 complete difficulty/unable to do it at all 5 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 Categories: d330 (Speaking); d335 (Producing Non- verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation) Relevant ICF Categories: d330 (Speaking); d335 (Producing Non- verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation)

11 Proposed Items for Social Relationships (Communication): Set B COMM-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in making [yourself/himself/herself] understood in conversations? COMM-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in making [yourself/himself/herself] understood in conversations? [INTERVIEWER: Read categories to respondent] [INTERVIEWER: Read categories to respondent] 1 no difficulty 1 no difficulty 2 a little bit of difficulty 2 a little bit of difficulty 3 quite a bit of difficulty 3 quite a bit of difficulty 4 a great deal of difficulty 4 a great deal of difficulty 5 complete difficulty/unable to do it at all 5 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 Categories: d330 (Speaking); d335 (Producing Non- verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation) Relevant ICF Categories: d330 (Speaking); d335 (Producing Non- verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation)

12 Proposed Items for Social Relationships (Communication): Set C COMM-1C. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? COMM-1C. Overall during the past ___ days, how much difficulty [did] [you/he/she] have in forming and maintaining social relationships? [INTERVIEWER: Present scale to respondent and say: “Please choose the number from 0 to 100 that best describes how much difficulty [you/he/she] had with making yourself/himself/herself] understood in conversations, over the past ___ days”] [INTERVIEWER: Present scale to respondent and say: “Please choose the number from 0 to 100 that best describes how much difficulty [you/he/she] had with making yourself/himself/herself] understood in conversations, over the past ___ days”] completely unable to make no difficulty making [myself/himself/herself] [myself/himself/herself] completely unable to make no difficulty making [myself/himself/herself] [myself/himself/herself] understood in conversations understood in conversations understood in conversations understood in conversations |________________________________________________| |________________________________________________| Relevant ICF Categories: d330 (Speaking); d335 (Producing Non-verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation) Relevant ICF Categories: d330 (Speaking); d335 (Producing Non-verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation)

13 Proposed Items for Social Relationships (Communication): Filter COMM-1B-F. Overall during the past ___ days, did you have any difficulty [did] [you/he/she] in making [yourself/himself/herself] understood in conversations? COMM-1B-F. Overall during the past ___ days, did you have any difficulty [did] [you/he/she] in making [yourself/himself/herself] understood in conversations? [INTERVIEWER: Read categories to respondent] [INTERVIEWER: Read categories to respondent] 1 no 1 no 2 yes 2 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 Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation) Relevant ICF Categories: d330 (Speaking); d335 (Producing Non verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation)

14 Proposed Items for Social Relationships: Follow-up to Filter Question COMM-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] in making [yourself/himself/herself] understood in conversations? COMM-1B. Overall during the past ___ days, how much difficulty [did] [you/he/she] in making [yourself/himself/herself] understood in conversations? [INTERVIEWER: Read categories to respondent] [INTERVIEWER: Read categories to respondent] 1 a little bit of difficulty 1 a little bit of difficulty 2 quite a bit of difficulty 2 quite a bit of difficulty 3 a great deal of difficulty 3 a great deal of difficulty 4 complete difficulty/unable to do it at all 4 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 Categories: d330 (Speaking); d335 (Producing Non- verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation) Relevant ICF Categories: d330 (Speaking); d335 (Producing Non- verbal Messages); could also cover d340 (Producing messages in formal sign language); d350 (Conversation)

15 Broad Questions Broad Questions What are your views on measuring Social Relationships in terms of capacity? What are your views on measuring Social Relationships in terms of capacity? Is it useful to have the Communi cation item? Is it useful to have the Communi cation item? Are any of the three approaches (i.e., no recall period, specific recall period, VAS) obviously superior, or is it worthwhile to subject all three to cognitive testing? Are any of the three approaches (i.e., no recall period, specific recall period, VAS) obviously superior, or is it worthwhile to subject all three to cognitive testing? Is it worthwhile to use filter questions? Is it worthwhile to use filter questions?