Quality of Life of Persons with Tourette Syndrome Webinar

Transcription

1 Quality of Life of Persons with Tourette Syndrome Webinar July 19, 2007 Presented by AUCD and supported by Cooperative Agreement U59/CCU from the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at Center for Disease Control and Prevention (CDC)

2 Webinar Agenda I. Welcome & Introduction Sue Lin, MS Project Director, AUCD-NCBDDD Cooperative Agreement II. Presentation Quality of Life Among Youth with Tourette Syndrome Sam Zinner, MD & Tari Topolski, PhD (WA UCEDD) III. Discussant Sue Levi-Pearl, V.P. and Director of Medical and Scientific Programs at Tourette Syndrome Association IV. Question and Answer

3 NCBDDD-AUCD Cooperative Agreement Strengthen the nation's capacity to carry out public health and disability activities Foster collaborations among AUCD, its members, and NCBDDD Facilitate a wide range of research, education, and dissemination activities.

4 Research Topics of Interests (RTOI) RTOI are specific research area of significance identified by scientists at NCBDDD, CDC. Past RTOI projects have focused on the following areas: Health Communication and Education Prevention of Secondary Conditions Healthcare Cost Analysis Quality of Life Studies Developmental Factors and Outcomes Health Promotion Interventions Co-Morbidity Prevalence Studies Specific disabilities areas include: autism, Down syndrome, Duchenne muscular dystrophy, hearing loss, fetal alcohol syndrome, spina bifida, and Tourette syndrome.

5 Presenters and Discussant Sam Zinner, MD University of Washington Tari Topolski, PhD University of Washington Sue Levi-Pearl, V.P. and Director of Medical and Scientific Programs at TSA

6 Webinar Guidelines All participants lines will be MUTED during the presentation Operator will facilitate the Q&A session Participants may submit questions online during presentation through Go To Webinar text box at any time Sample webinar screen

7 Quality of Life among Youth with Tourette Syndrome Samuel H. Zinner, MD Tari D. Topolski, PhD University of Washington

8 Supported by National Center on Birth Defects and Developmental Disabilities (NCBDDD) in cooperation with Assn of University Centers on Disabilities (AUCD)

9 Learning Objectives QoL definitions QoL in Tourette syndrome Our project

10 Project Aims Identify factors that contribute to QoL in youth (TS and TS+) Is a TS-QoL specific measure needed? Impact of TS on the Family

11 Long-range Goals Outcomes measurement dev t phases 1. Create assessment modules 2. Validate among different populations 3. Confirm in clinical practice

12 Why Measure Quality of Life? Goal of intervention QoL indistinguishable from unaffected peers Wallander,, Schmidt and Koot,, 2001

13 Concepts in Quality of Life Perceived vs. Health-related

14 Determinants of Health and Perceived Quality of Life External to Individual Social & Cultural Economic & Political Physical & Geographic Health, Education & Social Care Health Status and Health-Related Quality of Life Symptoms Functional Status Internal to Individual Health Perceptions Opportunity General Quality of Life Biology & Life Course Lifestyle & Health Behavior Illness Behavior Personality & Motivation Values & Preferences Survival Patrick, 1993

15 Definition of Quality of Life Perceptions of one s s position in life in context of their culture & value systems goals, expectations, standards & concerns World Health Org. QOL Group 1994, 1997

16 Quality of Life as a Lens Integrates internal & external influences Incorporates individual s s perspective Relates individual s s perceptions to others Pinpoints what is important to individuals

17 Generic vs Specific QoL Measures Generic compare different populations Specific capture concerns of specific populations evaluate interventions identify subtle influences

18 YQOL Conceptual Model "My Evaluation Of " Social Relationships Sense of Self Environment " my relationships with others" " my feelings about myself" " my opportunities & 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

19

20 Tourette syndrome and QoL Studies so far Elstner et al (2001) Bernard et al (2006) Storch et al (2007) Faqih (2007) Cultural influences

21 TOURETTE

22 LD Depression ADHD PLUS OCD TOURETTE GAD

23

24 Tics Psychosocial Generic quantitative QoL instrument Comorbid conditions Other Quantitative process Qualitative process Interviews TS-specific quantitative QoL instrument

25 Generic quantitative QoL instrument Quantitative process Qualitative process TS-specific quantitative QoL instrument

26 Assessment Instruments Quantitative Self-administered reports Other psychometric instruments Structured interview Qualitative Semi-structured interview

27 Tourette syndrome and QoL Sites U. Washington (USA) U. British Columbia (Canada) Recruitment

28 Assessment Step: Quantitative Participants Diagnosis Site TS-only TS+ UW Total 53 UBC Total

29 Assessment Step: Quantitative Participant characteristics Age (n = 96) Mean (SD) At tic onset 5.6 (2.3) At diagnosis 9.2 (2.7) At time of participation 13.5 (2.4)

30 Participant features - Gender Female (n = 9) Male (n=87)

31 Participant features - Ethnicity mer. Indian/Alaskan Asian/Pacific frican American Hispanic Caucasian

32 Comorbid frequencies Feature Med Interview Current n (%) Symptoms ADHD 44 (46%) 9 (09%) OCD 44 (46 %) 53 (55%) Anxiety 22 (23 %) Depression 14 (15%) 11 (12%) 8 (08%) LD 25 (26 %) 54 (56%)

33 Additional frequencies Feature n (%) Copro-phenomena phenomena hx 18 (19 %) Rage Attacks (now) 17 (18 %) Integrative health hx 22 (23 %) Fine motor difficulty 50 (52 %)

34 Family History UBC n=43 % UW n=53 % Total n=96 % Tics ADHD OCD

35 Youth QoL Compared with Others YQOL-R R Domain Self Relationships Environment/Culture General Quality of Life Control n= TS n= ADHD n= ML n= Scores are on a scale of 0-100;

36 QoL Comparisons Between Youth Populations All condition groups reported lower QoL Scores than youth with no chronic conditions Sense of Self TS lower than ML Relationships Environment = ADHD General Quality of Life

37 Mothers Reports on Contextual QoL During the past 4 weeks, how often has your child a... TS only n=38 TS+ n=54 ADHD n=19 Control n=8 behavior caused problems in your family 1.34 bc (0.99) 2.19 (1.01) 2.16 (0.77) 1.20 bc (0.42) spent time with a friend outside of school had serious emotional/ mental problems missed an activity because of physical/emotional problems 2.97 bc (0.92) 0.61 (0.89) 0.37 b (.068) 2.26 (0.99) 1.50 (1.13) 1.00 (1.12) 2.16 (1.07) 1.21 (0.79) 0.74 (0.87) 3.40 bc (0.52) 0.10 (0.32) 0.10 b (0.32) a YQOL contextual items are scored on a scale of 0 to 5 with 0 =Never and 4 = Very Often b sig from TS+ p<.05 c Differs from ADHD group at the alpha <.05 level

38 Mothers Reports of Impact on the Family TS Only Mean (sd) TS Plus Mean (sd) ADHD Mean (sd) Control Mean (sd) Negative Parenting Positive Parenting Social Impact Financial Impact Marital Impact Sibling Impact 6.47 (4.69) (5.50) (6.31) 4.50 (2.97) (4.84) 8.89 (4.42) 6.88 (4.36) (4.11) 2.50 (4.11) 6.22 (7.00) 6.60 (6.54) 0.25 (0.577) 2.87 (3.57) 5.31 (4.55) 6.44 (3.28) 1.63 (3.36) 3.21 (3.20) 7.22 (3.90) 7.89 (5.27) 2.67 (2.46) 3.24 (2.68) 7.30 (4.99) 7.05 (3.92) 2.40 (1.06)

39 Generic v Specific QoL Measures Generic compare different populations Specific capture concerns of specific populations evaluate interventions identify subtle influences

40 Determinants of Health and Perceived Quality of Life External to Individual Social & Cultural Economic & Political Physical & Geographic Health, Education & Social Care Health Status and Health-Related Quality of Life Symptoms Functional Status Internal to Individual Health Perceptions Opportunity General Quality of Life Biology & Life Course Lifestyle & Health Behavior Illness Behavior Personality & Motivation Values & Preferences Survival Patrick, 1993

41 Assessment Step: Qualitative Interviews Semi-structured item-generation Site # Subjects UW 18 UBC 15 TOTAL 33

42 Module Development Process Semi-structured interviews (33 youth with/ts) Expert opinion Item pool development Items selected based on theoretical approach Focus groups: young adults w/ts

43 Semi-structured Interviews: Question samples How would you describe a person with a good/poor QoL? If you could change one thing about your life, what would it be? Would you say people treat you differently because of your TS, either positively or negatively?

44 Item Pool Development: Text selection by 2 members Sociology Developmental psychology Interview transcripts Social psychology Anthropology Developmental pediatrics Relevant text Ecological psychology

45 Item Pool Development: Code generation by 2 members Relevant text Gen QoL Env Self Rel Sorted into Basic Domains

46 Item Pool Development: Draft items written it makes it difficult to make friends, especially in the teenager years because people are just so judgmental on what you look like and what you do. Gen QoL Self My peers judge me because of my tics Because of my tics it is difficult to make friends Env Rel Relevant text Basic domains Draft items

47 Item Criteria Item must be: specific to TS relevant to all youth with TS amenable to change frequently mentioned by youth with TS likely to discriminate w/symptom severity

48 Item Criteria Item should: evaluate a feeling, sensation or perception have semantic equivalence in other languages be in the parlance of the youth

49 Results from Interviews Generic QOL measure doesn t t address: teasing & bullying issues identified in the interviews environmental issues such as feeling like they cannot go to some public places YQOL-TS in development

50 Conclusions Preliminary results show: youth w/ TS experience a poorer QOL than youth w/o chronic conditions there is a significant impact upon the family there is a need for a TS-specific QOL measure

51 Collaborators University of Washington Samuel H. Zinner, MD Tari D. Topolski, PhD Todd C. Edwards, PhD Donald L. Patrick, PhD, MSPH University of British Columbia Roger D. Freeman, MD

52 Assistants University of Washington Ren Taylor, BS Katie White, BA Vanessa White, BA University of British Columbia Stefan Caney Lauren Giles

53 Contact Information Tari D. Topolski, PhD U. Washington - Seattle QoL Group topolski@u.washington.edu Samuel H. Zinner, MD U. Washington Dep t t of Pediatrics szinner@u.washington.edu