Quality of Life of Persons Quality of Life of Persons with Tourette - - PowerPoint PPT Presentation

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 Agreement U59/CCU321285-

• 01 from the National Center on

01 from the National Center on 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
• I. Welcome & Introduction –

– Sue Lin, MS Project Sue Lin, MS Project Director, AUCD Director, AUCD-

• NCBDDD Cooperative Agreement

NCBDDD Cooperative Agreement

• II. Presentation
• II. Presentation
• Quality of Life Among Youth with Tourette

Quality of Life Among Youth with Tourette Syndrome Syndrome – – Sam Zinner, MD & Tari Topolski, PhD Sam Zinner, MD & Tari Topolski, PhD (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 NCBDDD-

• AUCD Cooperative Agreement

AUCD Cooperative Agreement

• 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 sc RTOI are specific research area of significance identified by scientists at ientists at 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

Co-

• Morbidity Prevalence Studies

Morbidity Prevalence Studies Specific disabilities areas include: autism, Down syndrome, Duch Specific disabilities areas include: autism, Down syndrome, Duchenne enne 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 University of Washington Tari Topolski, PhD University of Washington Sue Levi-Pearl, V.P. and Director of Medical and Scientific Programs at TSA

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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 Long-

• range Goals

range Goals

Outcomes measurement Outcomes measurement dev dev’ ’t t phases phases

1.

• 1. Create assessment modules

Create assessment modules 2.

• 2. Validate among different populations

Validate among different populations 3.

• 3. Confirm in clinical practice

Confirm in clinical practice

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 Wallander, Schmidt and , Schmidt and Koot Koot, 2001 , 2001

Concepts in Quality of Life Concepts in Quality of Life

Perceived Perceived vs. vs. Health Health-

• related

related

Determinants of Health and Determinants of Health and Perceived Quality of Life Perceived Quality of Life

Social & Cultural Economic & Political Physical & Geographic Health, Education & Social Care

External to Individual

Symptoms Functional Status Health Perceptions Opportunity Biology & Life Course Lifestyle & Health Behavior Personality & Motivation Values & Preferences

General Quality

• f Life

Health Status and Health-Related Quality of Life Internal to Individual

Illness 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

• thers
• thers’

’

• Pinpoints what is important to individuals

Pinpoints what is important to individuals

Generic Generic vs vs Specific QoL Measures Specific QoL Measures

• 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

• 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

• enjoying life
• feeling life is worthwhile
• satisfied with one’s life

"…my relationships with others" "…my life" "…my feelings about myself" "…my opportunities &

• bstacles"

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

OCD LD Depression ADHD GAD

“PLUS”

TOURETTE

Generic

quantitative QoL instrument

Tics Psycho- social Comorbid conditions Other Quantitative process Qualitative process Interviews

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

Tourette syndrome and QoL Tourette syndrome and QoL

• Sites

Sites – –U. Washington

• U. Washington

(USA) (USA) – –U. British Columbia

• U. British Columbia (Canada)

(Canada)

• Recruitment

Recruitment

Assessment Step: Quantitative Assessment Step: Quantitative

• Participants

Participants

Diagnosis Diagnosis TS TS-

• only
• nly TS+

TS+ UW UW 33 33 UBC UBC 18 18 25 25 43 43 Total Total 38 38 58 58 96 96 20 20 Total Total 53 53 Site Site

Assessment Step: Quantitative Assessment Step: Quantitative

• Participant characteristics

Participant characteristics

Age (n = 96) Age (n = 96) Mean (SD) Mean (SD)

• At tic onset

At tic onset 5.6 (2.3) 5.6 (2.3)

• At diagnosis

At diagnosis 9.2 (2.7) 9.2 (2.7)

• At time of participation

At time of participation 13.5 (2.4) 13.5 (2.4)

Participant features Participant features -

• Gender

Gender

Female (n = 9) Male (n=87)

Participant features Participant features -

• Ethnicity

Ethnicity

Caucasian Hispanic African American

• Amer. Indian/Alaskan

Asian/Pacific

Comorbid frequencies Comorbid frequencies

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

Additional frequencies Additional frequencies

Feature Feature n n (%) (%) Copro Copro-

• phenomena

phenomena hx hx 18 (19 %) 18 (19 %) Rage Attacks (now) Rage Attacks (now) 17 (18 %) 17 (18 %) Integrative health Integrative health hx hx 22 (23 %) 22 (23 %) Fine motor difficulty Fine motor difficulty 50 (52 %) 50 (52 %)

Family History Family History

UBC UBC n=43 n=43 % % UW UW n=53 n=53 % % Total Total n=96 n=96 % % Tics Tics 61.9 61.9 56.6 56.6 58.9 58.9 ADHD ADHD 52.8 52.8 43.9 43.9 48.9 48.9 OCD OCD 41.5 41.5 56.6 56.6 50.0 50.0

Youth QoL Compared with Others Youth QoL Compared with Others

76.6 76.6

Relationships Relationships

75.5 75.5

Self Self

80.4 80.3 77.4 89.4 89.4

General General Quality Quality

• f Life
• f Life

79.8 78.4

Environment/Culture Environment/Culture ML ML n=52 n=52 ADHD ADHD n=55 n=55 TS TS n=96 n=96 Control Control n=107 n=107

YQOL YQOL-

• R Domain

R Domain

80.9 69.2 73.4

Scores are on a scale of 0-100;

82.7 72.2 72.7 89.4 81.4

QoL Comparisons QoL Comparisons Between Youth Populations Between Youth Populations

All condition groups reported lower QoL All condition groups reported lower QoL Scores than youth with no chronic Scores than youth with no chronic conditions conditions

• Sense of Self

Sense of Self TS lower than ML TS lower than ML

• Relationships

Relationships

• Environment

Environment = ADHD = ADHD

• General Quality of Life

General Quality of Life

During the past 4 weeks, how often has your child a. . . TS only TS only n=38 n=38 TS+ TS+ n=54 n=54 ADHD ADHD n=19 n=19 Control Control n=8 n=8

behavior caused problems in your family 1.34bc (0.99) 2.19 (1.01) 2.16 (0.77) 1.20bc (0.42) spent time with a friend

• utside of school

2.97 2.97bc (0.92) (0.92) 2.26 2.26 (0.99) (0.99) 2.16 2.16 (1.07) (1.07) 3.40bc (0.52) had serious emotional/ mental problems 0.61 0.61 (0.89) (0.89) 1.50 1.50 (1.13) (1.13) 1.21 1.21 (0.79) (0.79) 0.10 0.10 (0.32) (0.32) missed an activity because of physical/emotional problems 0.37 0.37b (.068) (.068) 1.00 1.00 (1.12) (1.12) 0.74 0.74 (0.87) (0.87) 0.10 0.10b (0.32) (0.32)

Mothers Reports on Contextual QoL Mothers Reports on Contextual QoL

a YQOL contextual items are scored on a scale of 0 to 5 with 0 =Never and 4 = Very Often bsig from TS+ p<.05 c Differs from ADHD group at the alpha <.05 level

Mothers Mothers’ ’ Reports of Impact on the Reports of Impact on the Family Family

TS Only Mean (sd) TS Plus Mean (sd) ADHD Mean (sd) Control Mean (sd) Negative Parenting 6.47 (4.69) 12.61 (5.50) 13.28 (6.31) 4.50 (2.97) Positive Parenting 11.79 (4.84) 8.89 (4.42) 6.88 (4.36) 12.63 (4.11) Social Impact 2.50 (4.11) 6.22 (7.00) 6.60 (6.54) 0.25 (0.577) Financial Impact 2.87 (3.57) 5.31 (4.55) 6.44 (3.28) 1.63 (3.36) Marital Impact 3.21 (3.20) 7.22 (3.90) 7.89 (5.27) 2.67 (2.46) Sibling Impact 3.24 (2.68) 7.30 (4.99) 7.05 (3.92) 2.40 (1.06)

Generic v Specific QoL Measures Generic v Specific QoL Measures

• 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

Determinants of Health and Determinants of Health and Perceived Quality of Perceived Quality of Life Life

Social & Cultural Economic & Political Physical & Geographic Health, Education & Social Care

External to Individual

Symptoms Functional Status Health Perceptions Opportunity Biology & Life Course Lifestyle & Health Behavior Personality & Motivation Values & Preferences

General Quality

• f Life

Health Status and Health-Related Quality of Life Internal to Individual

Illness Behavior

Survival

Patrick, 1993

Assessment Step: Qualitative Assessment Step: Qualitative

• Interviews

Interviews

Semi Semi-

• structured item

structured item-

• generation

generation Site Site # Subjects # Subjects

• UW

UW 18 18 15 15 TOTAL TOTAL 33 33

• UBC

UBC

Module Development Process Module Development Process

Semi-structured interviews (33 youth with/TS) Item pool development Expert

• pinion

Items selected based on theoretical approach Focus groups: young adults w/TS

Semi Semi-

• structured Interviews:

structured Interviews: Question samples Question samples

• How would you describe a person with

How would you describe a person with a a “ “good/poor good/poor” ” QoL? QoL?

• If you could change one thing about

If you could change one thing about your life, what would it be? your life, what would it be?

• Would you say people treat you

Would you say people treat you differently because of your TS, either differently because of your TS, either positively or negatively? positively or negatively?

Item Pool Development: Item Pool Development: Text selection by 2 members Text selection by 2 members

Sociology Social psychology Developmental psychology Ecological psychology Anthropology

Interview transcripts

Developmental pediatrics

Relevant text

Item Pool Development: Item Pool Development: Code generation by 2 members Code generation by 2 members

Relevant text Sorted into Basic Domains

Env Rel Self Gen QoL

Item Pool Development: Item Pool Development: Draft items written Draft items written

Relevant text

Basic domains

Draft items

My peers judge me because of my tics Because of my tics it is difficult to make friends “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.”

Env Rel Self Gen QoL

Item Criteria Item Criteria

• Item must be:

Item must be:

– – specific to TS specific to TS – – relevant to all youth with TS relevant to all youth with TS – – amenable to change amenable to change – – frequently mentioned by youth with TS frequently mentioned by youth with TS – – likely to discriminate w/symptom severity likely to discriminate w/symptom severity

Item Criteria Item Criteria

• Item should:

Item should:

– – evaluate a feeling, sensation or perception evaluate a feeling, sensation or perception – – have semantic equivalence in other have semantic equivalence in other languages languages – – be in the parlance of the youth be in the parlance of the youth

Results from Interviews Results from Interviews

Generic QOL measure doesn Generic QOL measure doesn’ ’t address: t address:

• teasing & bullying issues identified in

teasing & bullying issues identified in the interviews the interviews

• environmental issues such as feeling

environmental issues such as feeling like they cannot go to some public like they cannot go to some public places places

• YQOL

YQOL-

• TS in development

TS in development

Conclusions Conclusions

• Preliminary results show:

Preliminary results show:

– –youth w/ TS experience a poorer QOL youth w/ TS experience a poorer QOL than youth w/o chronic conditions than youth w/o chronic conditions – –there is a significant impact upon the there is a significant impact upon the family family – –there is a need for a TS there is a need for a TS-

• specific QOL

specific QOL measure measure

Collaborators Collaborators

University of Washington University of Washington

• Samuel H. Zinner, MD

Samuel H. Zinner, MD

• Tari D. Topolski, PhD

Tari D. Topolski, PhD

• Todd C. Edwards, PhD

Todd C. Edwards, PhD

• Donald L. Patrick, PhD, MSPH

Donald L. Patrick, PhD, MSPH University of British Columbia University of British Columbia

• Roger D. Freeman, MD

Roger D. Freeman, MD

Assistants Assistants

University of Washington University of Washington

• Ren Taylor, BS

Ren Taylor, BS

• Katie White, BA

Katie White, BA

• Vanessa White, BA

Vanessa White, BA University of British Columbia University of British Columbia

• Stefan Caney

Stefan Caney

• Lauren Giles

Lauren Giles

Contact Information Contact Information

Tari D. Topolski, PhD Tari D. Topolski, PhD

• U. Washington
• U. Washington -
• Seattle QoL Group

Seattle QoL Group topolski@u.washington.edu topolski@u.washington.edu

Samuel H. Zinner, MD Samuel H. Zinner, MD

• U. Washington
• U. Washington –

– Dep Dep’ ’t of Pediatrics t of Pediatrics szinner@u.washington.edu szinner@u.washington.edu