Quality of Life of Persons Quality of Life of Persons with Tourette Syndrome with Tourette Syndrome Webinar Webinar July 19, 2007 July 19, 2007 Presented by AUCD and supported by Cooperative Presented by AUCD and supported by Cooperative Agreement U59/CCU321285- -01 from the National Center on 01 from the National Center on Agreement U59/CCU321285 Birth Defects and Developmental Disabilities (NCBDDD) at Birth Defects and Developmental Disabilities (NCBDDD) at Center for Disease Control and Prevention (CDC) Center for Disease Control and Prevention (CDC)
Webinar Agenda Webinar Agenda I. Welcome & Introduction – – Sue Lin, MS Project Sue Lin, MS Project I. Welcome & Introduction Director, AUCD- -NCBDDD Cooperative Agreement NCBDDD Cooperative Agreement Director, AUCD II. Presentation II. Presentation � Quality of Life Among Youth with Tourette � Quality of Life Among Youth with Tourette Syndrome – – Sam Zinner, MD & Tari Topolski, PhD Sam Zinner, MD & Tari Topolski, PhD Syndrome (WA UCEDD) (WA UCEDD) III. Discussant III. Discussant � Sue Levi � Sue Levi- -Pearl, V.P. and Director of Medical and Pearl, V.P. and Director of Medical and Scientific Programs at Tourette Syndrome Scientific Programs at Tourette Syndrome Association Association IV. Question and Answer IV. Question and Answer
NCBDDD- -AUCD Cooperative Agreement AUCD Cooperative Agreement NCBDDD � Strengthen the nation's capacity � Strengthen the nation's capacity to carry out public health and to carry out public health and disability activities disability activities � Foster collaborations among � Foster collaborations among AUCD, its members, and AUCD, its members, and NCBDDD NCBDDD � Facilitate a wide range of � Facilitate a wide range of research, education, and research, education, and dissemination activities. dissemination activities.
Research Topics of Interests (RTOI) Research Topics of Interests (RTOI) RTOI are specific research area of significance identified by scientists at ientists at RTOI are specific research area of significance identified by sc NCBDDD, CDC. Past RTOI projects have focused on the following NCBDDD, CDC. Past RTOI projects have focused on the following areas: areas: � � Health Communication and Education Health Communication and Education � � Prevention of Secondary Conditions Prevention of Secondary Conditions � � Healthcare Cost Analysis Healthcare Cost Analysis � � Quality of Life Studies Quality of Life Studies � � Developmental Factors and Outcomes Developmental Factors and Outcomes � � Health Promotion Interventions Health Promotion Interventions � � Co- -Morbidity Prevalence Studies Morbidity Prevalence Studies Co Specific disabilities areas include: autism, Down syndrome, Duchenne enne Specific disabilities areas include: autism, Down syndrome, Duch muscular dystrophy, hearing loss, fetal alcohol syndrome, spina muscular dystrophy, hearing loss, fetal alcohol syndrome, spina bifida, bifida, and Tourette syndrome. and Tourette syndrome.
Presenters and Discussant Presenters and Discussant Sam Zinner, MD Tari Topolski, PhD Sue Levi-Pearl, V.P. and Director of University of University of Medical and Washington Washington Scientific Programs at TSA
Webinar Guidelines Webinar Guidelines � All participants lines will � All participants lines will be MUTED during the be MUTED during the presentation presentation � Operator will facilitate � Operator will facilitate the Q&A session the Q&A session � Participants may submit � Participants may submit questions online during questions online during presentation through Go presentation through Go To Webinar text box at To Webinar text box at any time any time Sample webinar screen
Quality of Life among Youth Quality of Life among Youth with Tourette Syndrome with Tourette Syndrome Samuel H. Zinner, MD Samuel H. Zinner, MD Tari D. Topolski, PhD Tari D. Topolski, PhD University of Washington University of Washington
Supported by Supported by National Center on Birth Defects and National Center on Birth Defects and Developmental Disabilities Developmental Disabilities (NCBDDD) (NCBDDD) in cooperation with in cooperation with Assn of University Centers on Disabilities Assn of University Centers on Disabilities (AUCD) (AUCD)
Learning Objectives Learning Objectives � QoL definitions � QoL definitions � QoL in Tourette syndrome � QoL in Tourette syndrome � Our project � Our project
Project Aims Project Aims � Identify factors that contribute to � Identify factors that contribute to QoL in QoL in youth (TS and TS+) youth (TS and TS+) � Is a TS � Is a TS- -QoL specific measure needed? QoL specific measure needed? � Impact of TS on the Family � Impact of TS on the Family
Long- -range Goals range Goals Long Outcomes measurement dev dev’ ’t t phases phases Outcomes measurement 1. Create assessment modules Create assessment modules 1. 2. Validate among different populations Validate among different populations 2. 3. Confirm in clinical practice Confirm in clinical practice 3.
Why Measure Quality of Life? Why Measure Quality of Life? � Goal of intervention � Goal of intervention – QoL indistinguishable from unaffected QoL indistinguishable from unaffected – peers peers Wallander, Schmidt and , Schmidt and Koot Koot, 2001 , 2001 Wallander
Concepts in Quality of Life Concepts in Quality of Life Perceived Perceived vs. vs. Health- -related related Health
Determinants of Health and Determinants of Health and Perceived Quality of Life Perceived Quality of Life External to Individual Social & Economic Physical & Health, Cultural & Political Geographic Education & Social Care Health Status and Health-Related Quality of Life General Functional Health Symptoms Opportunity Quality Status Perceptions Internal to Individual of Life Lifestyle Biology & Illness Personality & Values & & Health Life Course Behavior Motivation Preferences Behavior Survival Patrick, 1993
Definition of Quality of Life Definition of Quality of Life � Perceptions of one � Perceptions of one’ ’s position in life s position in life – in context of their culture & value systems in context of their culture & value systems – – goals, expectations, standards & concerns goals, expectations, standards & concerns – World Health Org. QOL Group 1994, 1997 World Health Org. QOL Group 1994, 1997
Quality of Life as a Lens Quality of Life as a Lens � Integrates internal & external influences � Integrates internal & external influences � Incorporates individual � Incorporates individual’ ’s perspective s perspective � Relates individual � Relates individual’ ’s perceptions to s perceptions to others’ ’ others � Pinpoints what is important to individuals � Pinpoints what is important to individuals
Generic vs vs Specific QoL Measures Specific QoL Measures Generic � Generic � Generic – compare different populations compare different populations – � Specific � Specific – capture concerns of specific populations capture concerns of specific populations – – evaluate interventions evaluate interventions – – identify subtle influences identify subtle influences –
YQOL Conceptual Model YQOL Conceptual Model "My Evaluation Of…" Social Relationships Sense of Self Environment "…my relationships "…my feelings about "…my opportunities & with others" myself" obstacles" • adult support • belief in self • engagement, activities • caring for others • being oneself • good education • family relations • mental health • liking neighborhood • freedom • physical health • monetary resources • friendships • spirituality • personal safety • participation • view of future • peer relations General Quality of Life "…my life" • enjoying life • feeling life is worthwhile • satisfied with one’s life
Tourette syndrome and QoL Tourette syndrome and QoL � Studies so far � Studies so far –Elstner Elstner et al et al (2001) – (2001) –Bernard et al Bernard et al (2006) – (2006) –Storch Storch et al et al (2007) – (2007) –Faqih Faqih (2007) – (2007) � Cultural influences � Cultural influences
TOURETTE
GAD ADHD Depression TOURETTE “PLUS” OCD LD
Comorbid Generic Tics conditions quantitative QoL instrument Psycho- Other social Quantitative process Interviews Qualitative process TS-specific quantitative QoL instrument
Generic quantitative QoL instrument Quantitative process Qualitative process TS-specific quantitative QoL instrument
Assessment Instruments Assessment Instruments � Quantitative � Quantitative – Self Self- -administered reports administered reports – – Other psychometric instruments Other psychometric instruments – – Structured interview Structured interview – � Qualitative � Qualitative – Semi Semi- -structured interview structured interview –
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