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Two Year Outcomes of Autism Early Intervention in BC

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Title: Two Year Outcomes of Autism Early Intervention in BC


1
Two Year Outcomes of Autism Early Intervention in
BC
  • January, 2005
  • Pat Mirenda, Ph.D., Project Director
  • Veronica Smith, Anat Zaidman-Zait, Paula
    Kavanagh, and Karen Bopp, Research Assistants
  • Bruno Zumbo, Ph.D., Statistical Consultant
  • The University of British Columbia

2
What is Early Intensive Behavioral Intervention
in BC?
  • Early intensive behavioral intervention (EIBI)
    was implemented in May, 2001
  • There are three EIBI sites
  • Delta Association for Child Development
  • Queen Alexandra Centre for Children (Victoria)
  • Thompson Okanagan Autism Project (TOAP) (child
    development centres in Penticton, Kelowna,
    Vernon, Kamloops)

3
What Services Do EIBI Programs Provide?
  • EIBI consists of
  • Year-round, at least 20 hours/week of 11
    intervention
  • Highly structured teaching, based on applied
    behavior analysis (ABA) principles
  • Integrated therapies (SLP, OT, etc.)
  • Component of integration with typical peers
  • Positive behavioural support for problem
    behaviour
  • Family involvement in training and intervention
  • Each EIBI sites is funded to provide services to
    a minimum of 25 children and families at any time

4
What is Interim Early Intensive Intervention in
BC?
  • The Interim Early Intensive Intervention (IEII)
    funding model (also known as Individualized
    Funding) was implemented in June, 2002 for all BC
    children with autism spectrum disorders, ages 0-6
  • Families receive up to 20,000 per year to
    purchase services for their children from a list
    of Qualified Service Providers
  • Behaviour consultants and interventionists
  • Speech-language pathologists
  • Occupational and physiotherapists

5
The Evaluation Project
  • The evaluation project was initiated at the very
    beginning of the EIBI and IEII programs.
  • So, the results only apply to the children and
    families who were initially involved in these
    programs, which have developed considerably since
    the evaluation was completed
  • Results may be different if the evaluation was
    conducted today

6
Overview of the Evaluation
  • The evaluation project was approved by UBCs
    Behavioral Ethics Review Board
  • All EIBI and IEII families were invited but not
    required to participate in the project
  • 50 of EIBI children/families who gave consent in
    each site were selected at random for the
    evaluation. The total number of EIBI families in
    the project was 39.
  • All IEII families who consented to participate
    and whose children were eligible to receive at
    least one year of IEII funding were also
    included. The total number of EIBI families in
    the project was 31.

7
Evaluators
  • Evaluators assessed each family and child at the
    EIBI site office or at home
  • Multidisciplinary team of evaluators
  • Psychologist (same person each time)
  • Speech-language pathologist (SLP) (same person
    each time)
  • Family interviewer (different evaluators each
    time)
  • Psychologist, SLP each spent several hours with
    each child, often on separate days
  • Family interviewers spent several hours with
    family member(s)
  • Children and families were assessed before
    intervention started (T1), 6 months later (T2), 1
    yr later (T3), and 2 yrs later (T4)

8
Participants by Region
BC Region EIBI Participants IEII Participants
Kootenays 0 1
Okanagan 9 0
Thompson/Caribou 4 0
Upper Fraser 0 0
South Fraser 13 6
Simon Fraser 0 6
Coastal North Shore 0 0
Vancouver/Richmond 0 12
North 0 3
Upper Island 2 2
Victoria 11 1
TOTAL 39 31
9
Who Were the Children?
Variable EIBI (N 39) IEII (N 31)
Age at T1 46 mo (range 21-68 mo) 55 mo (range 28-72 mo)
Gender 33 boys (85), 6 girls 25 boys (81), 6 girls
T1 diagnosis 29 autism (74), 10 PDDNOS 27 autism (87), 4 PDDNOS
Ethnicity 74 Euro-Canadian, 21 Asian-Can, 5 other 26 Euro-Canadian, 42 Asian-Can, 32 other
Primary language at home 97 English, 3 other 13 spoke more than 1 language at home 58 English, 16 Chinese, 26 other 61 spoke more than 1 language at home
10
Children (Cont)
  • Before intervention started
  • 61 of EIBI children and 97 of IEII children
    were in preschool or day care
  • Most children both groups had received small
    amounts of intervention from infant development
    consultants, speech-language pathologists,
    occupational therapists, or other professionals
  • Four EIBI and three IEII children had received
    ABA therapy three received more than 900 hours,
    while the others received fewer hours

11
Who Were the Families?
Variable EIBI IEII
Marital status 29 two-parent families (74), little change over 2 yrs 26 two-parent families (84), little change over 2 yrs
Average family education Professional diploma/some University Some University
Average family occupation Semi-skilled worker/skilled manual worker Semi-skilled worker/skilled manual worker
12
Treatment Provided
? Pat Mirenda, Ph.D., 2005
13
Treatment Services Received
  • As part of their intervention, all EIBI and
    almost all IEII children received
  • At least some structured ABA teaching or behavior
    support services
  • Either direct or consultative speech-language and
    occupational therapy
  • Some EIBI and IEII children received various
    recreation therapies
  • All but two children attended day care,
    preschool, or school as well

14
Average Hours of Treatment Over 2 Years
15
Was There a Relationship Between Child Progress
and Hours of Treatment?
  • Using statistical tests, we found no significant
    relationship between child progress on any
    measure and either
  • Total hours of treatment without school or
  • Total hours of treatment including school
  • This means that factors other than hours of
    treatment were better predictors of child outcomes

16
Outcomes over 2 Years (T1-T4)
T1 average age 42 T4 average age 61
? Pat Mirenda, Ph.D., 2005
17
Understanding the Results.
  • Sometimes, test scores can change just because a
    child has good day or a bad day when he/she
    is tested -- but the difference is not really
    meaningful or important -- it could have occurred
    by chance
  • We used a number of statistical tests to
    determine whether children made more progress
    over 2 years they would have made just by chance
  • We use the term significant in this
    presentation to indicate that there is a 5 or
    less likelihood that a change occurred by chance,
    and code this in green
  • We use the term not significant to indicate
    that the result could have occurred by chance,
    and code this in red

18
Understanding the Results.
  • First, growth curve analyses were done
  • To determine whether the rate of change over 2
    yrs of treatment was greater than expected by
    chance (i.e., significantly different) and
  • To obtain estimates of the childrens rate of
    progress on various measures prior to
    intervention
  • Then, the data were analyzed to examine specific
    predictors of progress over 2 yrs

19
Were There Differences In Progress Between the
EIBI and IEII Groups?
  • There no significant differences between the two
    service delivery groups on any measure
  • On average, the EIBI and IEII children made
    similar progress over 2 years
  • So, we combined the two groups into one group of
    70 children to answer the rest of the questions

20
Were There Differences in Progress Between
Children with Autism and PDD-NOS?
  • There were no significant differences between the
    two diagnostic groups on any measure
  • Children with autism and children with PDD-NOS
    (pervasive developmental disorder-not otherwise
    specified) made similar progress
  • So, we analyzed the results across both children
    with autism and those with PDD-NOS to answer the
    rest of the questions

21
Was More Progress Made by Children Who Were
Younger at T1?
  • There were no significant differences
    between children who started treatment younger
    and those who started when they were older on any
    measure
  • Children who started when they were older made as
    much progress as children who started when they
    were younger
  • But remember At T1, EIBI children were 46 months
    old, on average (range 21-68 mo) and IEII
    children were 55 months old, on average (range
    28-72 mo), at T1 -- that is, no children were
    older than age 6 at T1

22
Were There Differences for Children Who Were
Testable vs. Untestable?
  • Untestability was determined on a test-by-test
    basis, using different criteria for each measure
  • Children were considered to be untestable if they
    met the criterion established for each test at
    both T1 and T2
  • Significant differences were found between
    testable and untestable children on several
    measures
  • In other words, children who could not achieve at
    least a minimum test score on these tests both
    before they began treatment as well as 6 months
    later made less progress over 2 years, compared
    to children who could be tested successfully
  • So, the results for testable and untestable
    children will be presented separately in the
    slides that follow

23
Reading the Graphs
  • We used growth curve analysis to find out whether
    the childrens scores on various tests changed
    significantly over the 2 yrs
  • We charted the results using graphs that look
    like this

24
What Do the Graphs Mean?
  • Each grey line is one child
  • These are the childs test score
  • These are when the child was tested
  • 0 before intervention (T1)
  • 6 months later (T2)
  • 12 months later (T3)
  • 24 months later (T4)

25
What Do the Graphs Mean?
  • The red line is the average test score across all
    70 children
  • So, in this graph, the average score increased
    from 60 to just over 80 between T1 and 2 years
    later

26
Test Results
  • The next slides present the test results over 2
    years for all 70 children

27
Autism Severity and Symptoms CARS and ABC
  • CARS Childhood Autism Rating Scale
  • Administered by psychologist
  • Based on observation of child and family
    interview
  • Provides descriptions of symptoms and severity
    rating
  • ABC Autism Behavior Checklist
  • Administered by family interviewer
  • Based on parent report of behaviors

28
CARS
  • On the CARS, low scores less severe autism
  • Average score at baseline 35.9
  • Average score at 2 yrs 34.2
  • This is not a meaningful decrease in autism
    severity, as observed by the psychologist

29
ABC
  • On the ABC, low scores fewer autistic behaviors
  • Average score at baseline 61
  • Average score at 2 yrs 41
  • This is a significant decrease in autistic
    behaviors, as reported by parents

30
Temperament and Atypical Behavior Scale (TABS)
  • Administered by family interviewer, based on
    parent report
  • Provides subscale scores related to four clusters
    of atypical behaviors
  • Detached behaviors related to being in his/her
    own world
  • Hypersensitive easily frustrated, tantrums,
    aggressive, impulsive
  • Underreactive socially unresponsive
  • Dysregulated sleep problems, difficult to
    comfort

31
TABS Standard Scores
  • On the TABS, high scores fewer unusual
    behaviors
  • On average, the childrens lowest scores were on
    the detached subscale and remained atypical
    after 2 years of intervention
  • Scores for the other subscales improved somewhat,
    but the children were still in the TABS at risk
    category

32
IQ Testable Children
  • These are standard scores, not raw scores
  • Typical childrens standard scores tend to be
    stable over time
  • Testable children
  • Started with a mean score of 60
  • Ended with a mean score of 83.7 at T4 (23.7 pts)
  • This is significant

33
IQ Untestable Children
  • Untestable children
  • Started with a mean score of 45.8
  • Ended with a mean score of 49.7 at T4 (3.9 pts)
  • This is significant, even though it is a small
    increase

34
One More Lesson!
  • To read the next set of graphs, you need to know
    what this dotted red line means
  • This is a statistical estimate of what the
    average childs test score would have been
    without intervention
  • In general, the bigger the gap between the solid
    and the dotted red lines, the greater the impact
    of the intervention

35
Adaptive Behavior VABS
  • VABS Vineland Adaptive Behavior Scales
  • Administered by psychologist
  • Based on parent interview
  • Provides total score and subscale scores in four
    areas
  • Communication
  • Daily living skills
  • Socialization
  • Motor skills

36
VABS Communication
  • Typical children (ages 0-8) gain approx. 1.15 raw
    score points per month (ppm) on this subscale
  • EIBI and IEII children gained, on average
  • .7 ppm prior to intervention
  • 1.07 ppm during intervention
  • This is a significant gain of 7 months more than
    would have occurred without intervention
  • 31 of the change was due to treatment 69 was
    due to maturation

37
VABS Socialization
  • Typical children (ages 0-8) gain approximately
    1.0 raw score ppm on this subscale
  • EIBI and IEII children gained, on average
  • .72 ppm prior to intervention
  • .74 ppm during intervention
  • This is not a significant gain compared to what
    would have occurred without intervention
  • 4 of the change was due to treatment 96 was
    due to maturation

38
VABS Motor Skills
  • Typical children (ages 0-6) gain approximately
    1.0 raw score ppm
  • EIBI and IEII children gained, on average
  • .87 ppm prior to intervention
  • .74 ppm during intervention
  • This is not a significant gain compared to what
    would have occurred without intervention in
    fact, it is a slight decrease in gain

39
VABS Daily Living Skills
  • Typical children (ages 0-8) gain approximately
    1.35 raw score ppm
  • EIBI and IEII children gained, on average
  • .7 ppm prior to intervention
  • 1.15 ppm during intervention
  • This is a significant gain of 6 months more than
    would have occurred without intervention
  • 46 of the change was due to treatment 54 was
    due to maturation

40
Preschool Lifestyle Inventory
  • The PLI measures the number of different leisure
    and personal management activities done by the
    child across nine areas in the past 30 days, by
    parent report
  • Also measures the amount of support required by
    the child in activities (1 no support
    independent, 4 substantial support), by parent
    report

41
Results Leisure Activities
  • Children were engaged in significantly more
  • Play activities (e.g., puzzles, drawing, lego,
    play-dough, doll play, looking at books, board
    games)
  • Exercise activities (e.g., riding a tricycle,
    going on swings/slides, skating, throwing a ball)
  • Media activities (e.g., using a computer,
    watching TV/videos
  • Community activities (e.g., going to the park,
    movies, swimming, church, parties)
  • Other leisure activities identified by the parent

42
Results Daily Living Skills
  • Children were also engaged in significantly more
  • Food-related activities (e.g., using spoon/fork,
    ordering food in restaurant, making a snack)
  • Space and belongings activities (e.g., putting
    away toys, setting the table, pet care)
  • Personal hygiene and community activities (e.g.,
    toileting, dressing, using a schedule)

43
Results Support
  • Over 2 years, children required significantly
    less support for personal hygiene and community
    activities (e.g., toileting, dressing, washing
    hands, brushing teeth)

44
Social Network Analysis Form (SNAF)
  • Measures the number of socially important people
    in the childs life within the past 30 days, by
    parent report
  • Family members
  • Preschool/daycare/school contacts
  • Friends
  • Neighbours
  • Paid staff
  • Other

45
Social Network Results
  • Significant increases were found in the number of
    childrens
  • Preschool/school peers
  • Friends
  • Paid staff
  • No significant differences were found in other
    areas (e.g., number of family members,
    neighbours, etc.)

46
Receptive Language Tests
  • PLS-AC Preschool Language Scale-3
  • Administered by speech-language pathologist (SLP)
  • Provides receptive language subscale score
    (global language comprehension)
  • PPVT Peabody Picture Vocabulary Test (IIIA and
    IIIB)
  • Administered by SLP
  • Measures single word vocabulary comprehension

47
PLS-AC Testable Children
  • Typical children (ages 0-8) gain approximately
    0.6 raw score ppm
  • Testable children gained, on average
  • 0.4 ppm prior to intervention
  • .75 ppm during intervention
  • This is a significant gain of 12 months more
    than would have occurred without intervention
  • 39 of the change was due to treatment 61 was
    due to maturation

48
What Does This Mean?
  • For these children, skills gained as a result of
    the change in rate of progress include the
    ability to understand
  • Advanced spatial concepts (e.g., under, in back
    of)
  • Advanced descriptors (e.g., long ,short)
  • Time concepts (e.g., day versus night)
  • Advanced quantities (e.g., Which one has
    five?)
  • Complex directions (e.g., Give me the small red
    ball in the box)
  • Passive voice (e.g.,The boy was chased by the
    dog)

49
PLS-AC Untestable Children
  • Typical children (ages 0-8) gain approx. 0.6 raw
    score ppm
  • Untestable children gained, on average
  • 0.2 ppm prior to intervention
  • 0.5 ppm during intervention
  • This is a significant gain of 12 months more
    than would have occurred without intervention
  • 67 of the change was due to treatment 33 was
    due to maturation

50
What Does This Mean?
  • For these children, skills gained as a result of
    the change in rate of progress include the
    ability to identify
  • Pictures
  • Body parts (e.g., hair, mouth, eye, nose, etc.)
  • Action words (e.g., eat, sleep, drink, play,
    wash)
  • Basic spatial concepts (e.g., in, off, out of)
  • Pronouns (e.g., me, my, him)
  • Early quantity concepts (e.g., some, the rest of)
  • Functional object use (e.g., scissors are used
    for cutting paper)
  • Basic descriptors (e.g., big, little, wet)

51
PPVT Testable Children
  • Typical children (ages 0-8) gain approx. 1.1 raw
    score ppm
  • Testable children gained, on average
  • 0.4 ppm prior to intervention
  • 1.6 ppm during intervention
  • This is a significant gain of 27 months more
    than would have occurred without intervention
  • 77 of the change was due to treatment 23 was
    due to maturation

52
PPVT Untestable Children
  • Typical children gain approximately 1.1 raw score
    ppm
  • Untestable children gained, on average
  • 0 ppm prior to intervention
  • .4 ppm during intervention
  • This is a significant gain of 20 months more
    than would have occurred without intervention
  • Unable to estimate the amount of change due to
    treatment because of very low T1 scores

53
Expressive Language Tests
  • PLS-EC Preschool Language Scale
  • Administered by SLP
  • Measures global expressive language
  • EOWPVT Expressive One-Word Picture Vocabulary
    Test
  • Administered by SLP
  • Measures single word vocabulary output
  • MacArthur Words Gestures, Words Sentences
  • Administered by family interviewers
  • Measures parent report of of words child
    understand and says, from a list of 680 words

54
PLS-EC
  • Typical children gain approx. 0.6 raw score ppm
  • Both testable and untestable children gained, on
    average
  • 0.3 ppm prior to intervention
  • 0.5 ppm during intervention
  • This is a significant gain of 6 months more than
    would have occurred without intervention
  • 39 of the change was due to treatment 61 was
    due to maturation

55
What Does This Mean?
  • For the average child, skills gained as a
    result of the change in rate of progress include
    the ability to
  • Use possessives (e.g., The boys cat)
  • Tell how an object is used in a short sentence
    (e.g., I use a spoon to eat)
  • Answer questions logically (e.g., What do you do
    when youre sleepy? I go to bed)
  • Use pronouns such as I, she, we, they

56
EOWPVT Testable Children
  • Typical children gain approximately 1.0 raw score
    ppm
  • Testable children gained, on average
  • 0.4 ppm prior to intervention
  • 1.4 ppm during intervention
  • This is a significant gain of 25 months more
    than would have occurred without intervention
  • 71 of the change was due to treatment 29 was
    due to maturation

57
EOWPVT Untestable Children
  • Typical children gain approx. 1.0 raw score ppm
  • Untestable children gained, on average
  • 0 ppm prior to intervention
  • .2 ppm during intervention
  • This is a significant gain of 15 months more
    than would have occurred without intervention
  • Unable to estimate the amount of change due to
    treatment because of very low T1 scores

58
MCDI Words Said
  • Approximately one-third (34.3) of the children
    could say only 1-49 words on the MCDI at T1,
    compared to only 12 at T4
  • Only 4.3 of the children could say 650 words or
    more on the MCDI at T1, compared to almost
    one-third (32.7) at T4

59
MCDI Words Said
  • The childrens average number of words on the
    MCDI increased from 164 at T1 to 424 at T4 -- a
    260 increase

60
What Predicted Change?
  • We used statistical tests to determine whether
    any T1 variables or measures were good predictors
    of how much change would occur in individual
    children over the 2 years
  • In other words, was it possible to predict before
    intervention which children would benefit the
    most and, if so -- how?

61
Predictors
  • None of the following were good predictors of
    change over 2 years
  • Type of service (EIBI vs. IEII)
  • Diagnosis (autism vs. PDD-NOS)
  • Age at baseline
  • Total hours of treatment, either with or without
    school/ preschool/daycare
  • Combinations of the following were good
    predictors of child change on some measures, over
    2 years
  • Testability at T1 and T2 but not at T1 alone
  • T1 CARS scores (less severe autism predicted more
    progress)
  • T1 IQ scores (higher IQ scores predicted more
    progress)
  • T1 number of words said on the MCDI (more words
    predicted more progress)
  • There may be other (and better) predictors as
    well that were not examined in this analysis

62
Parenting Stress PSI-SF
  • PSI Parenting Stress Inventory-Short Form
  • Administered by family interviewer
  • Based on parent report
  • Provides total parenting stress score and
    subscale scores in four areas

63
Parenting Stress PSI-SF
  • PSI Parenting Stress Inventory-Short Form
  • Administered by family interviewer
  • Based on parent report
  • Measures total parenting stress -- that is,
    stress related to parenting (in this case) the
    child with autism, not stress caused by other
    factors (e.g., marital problems, family illness,
    financial difficulties, etc.)
  • Scores of 90 or above are considered problematic
    (see blue line on next slide)

64
PSI-SF
  • Average score at baseline 96.6
  • 90 or more 64 of families
  • Average score at 2 yrs 82.6
  • 90 or more 34 of families
  • This is a significant decrease but is still
    worrisome for the 34 of families with scores
    above 90

65
What Child Factors Predicted PSI Scores?
  • We used statistical tests to determine if
    specific child factors were associated with
    (i.e., predicted) changes in PSI scores over the
    2 years
  • We examined all of the test results (IQ,
    expressive and receptive language, daily living
    skills, problem behavior, etc.)
  • The only significant predictors were changes in
    problem behavior scores on the TABS and changes
    in autistic behavior scores on the ABC --
    together, these accounted for 77 of the PSI
    score change
  • This suggests that reduced problem behavior is
    the factor most related to reduced parenting
    stress and should be a high priority for direct
    intervention from the outset of treatment

66
Parent Perceptions and Satisfaction
? Pat Mirenda, Ph.D., 2005
67
Parent Satisfaction PSQ
  • PSQ Parent Satisfaction Questionnaire
  • Adapted from an instrument used in Lovaas (ABA)
    research sites
  • Administered by the family interviewer
  • Measures parents perceptions of child change in
    several areas and satisfaction with the EIBI or
    IEII programs as whole
  • Completed at each evaluation point here, we
    summarize only the results at 32 mo (T5) for EIBI
    families and 24 mo (T4) for IEII families

68
Parent Perceptions of Child Change
  • Parents were asked if they noticed improvements
    in their childs
  • Language and communication skills
  • Social skills
  • Play and leisure skills
  • Aggression and tantrums
  • Self-stimulatory and ritualistic behaviour
  • Self-help skills

69
Parent Perceptions of Child Change
  • Parents rated the amount of change in each area
    from 1-7
  • 1 this is no longer a problem for my child
  • 2 significantly improved
  • 3 slightly improved
  • 4 no change
  • 5 slightly worse
  • 6 significantly worse
  • 7 much worse

70
Parent Perceptions of Child Change
71
Parent Satisfaction
  • Parents were also asked to rate their
    satisfaction in a number of areas
  • In general, the rating scale was
  • 1 very negative
  • 2 or 3 somewhat or slightly negative
  • 4 neutral or just right
  • 5 or 6 somewhat or mostly positive
  • 7 very positive

72
How Do You Feel About
the treatment methods used with your child?
73
How Do You Feel About
the therapists working with your child?
74
How Do You Feel About
the workload for you and your child?
75
How Has Treatment Affected
your stress and that of your child?
76
How Has Treatment Affected
your family, overall?
77
Quality Compared to Other Services Received
78
How Has Treatment Affected
your confidence and hopefulness for your childs
future?
79
Recommend to Others?
80
Overall Ratings
81
Parent Benefits
82
Parent Benefits
83
Summary
  • Over 2 years, children receiving EIBI and IEII
    made more progress per month than they are likely
    to have made without treatment, on almost every
    measure
  • On average, both EIBI and IEII parents saw
    significant improvements over 2-3 yrs in their
    children, and were very satisfied with the
    services they received

84
Many Thanks to
  • Psychologists
  • Ron Buen
  • Kathryn Cass
  • Julie Conry
  • Linda Eaves
  • Peggy Koopman
  • Karl Mueller
  • Tara Tunstall
  • Edith van de Watering
  • Speech-language pathologists
  • Barbara Cotter
  • Marta Eveson
  • Betsy Niely
  • Mary McKenna
  • Shannon Muir
  • Liz Payne
  • Lisa Prokopowitz
  • Pat Savinkoff
  • Veronica Smith
  • Rhoda Zacker

85
Many Thanks to
  • Additional UBC research assistants
  • Karen Ott VandeKamp
  • Kim Hurd
  • Robyn Teske
  • Project assistant Jackie Brown
  • And, most of all, all the families and children
    who participated!
  • Family interviewers
  • Kirsten Turoldo
  • Lynn Edwards
  • Brenda Fossett
  • Kim Hurd
  • Margaret Gauthier
  • Jane Kelty
  • Liana Maione
  • Karen Ott vandeKamp
  • Laurie Reid
  • Tawnya Schulz
  • Robyn Teske
  • Sandra Waddle
  • Krista Zambolin

86
The End
? Pat Mirenda, Ph.D., 2005
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