The Burden of Prenatal Exposure to Alcohol: Quality of Life and Costs

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The Burden of Prenatal Exposure to Alcohol
Quality of Life and Costs

• Dr. Brenda Stade, RN
• St. Michaels Hospital, Toronto

2
Acknowledgement

• Dr. Bonnie Stevens
• Dr. Wendy Ungar
• Dr. Joseph Beyene
• Dr. Gideon Koren

3
Outline

• Background
• Purpose
• Research Questions
• Significance
• Methods Primary Research Questions
• Results Primary Research Questions
• Conclusion
• Implications

4
Background

• In Canada the incidence of Fetal Alcohol Spectrum
  Disorder (FASD) has been estimated to be 1 to 6
  in 1000 live births
• FASD is the leading cause of developmental and
  cognitive disabilities among Canadian children.

5
Relevant Research

• There are no studies that measure the quality of
  life of children with FASD.
• Four previous estimates of costs ranged from
  74.6 million to 9.69 billion dollars annually
  to the USA.

6
Relevant Research

• Previous estimates of costs were limited to FAS
  and did not reflect other alcohol-related
  effects.
• 3 of the 4 studies did not include costs to
  family/patient.
• No research included costs of externalizing
  behaviors.
• All studies were US-based, and estimated annual
  costs to the nation.

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Purpose

• To measure the impact that FAS or FAE has on the
  Health Related Quality of Life of Canadian
  children, 8 to 21 years.
• To estimate the total costs associated with FAS
  and FAE at the individual level.

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Primary Research Questions

• What is the Health Related Quality of Life (HRQL)
  of children with FAS, and FAE?
• What are the average annual direct costs and
  productivity losses per case of FAS and FAE from
  1 to 21 years of age in Canada?

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Secondary Research Questions

• What are the factors that influence the costs of
  FAS and FAE?
• What are the lifetime case-specific
• costs associated with FAS and FAE?
• What are the childrens experiences of living
  day-to day with FAS or FAE?

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Significance

• The study provides a major contribution to new
  knowledge.
• It is anticipated that articulating the
  consequences of prenatal exposure to alcohol may
  help children with FASD across Canada.

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MethodsConceptual Perspectives

• Quality of Life
• Physical status and functional abilities
• Psychological and well-being
• Social interactions
• Economic and/or vocational status
• Spiritual/religious status.

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MethodsConceptual Perspectives

• Quality of Life
• Health-related quality of life (HRQL) has been
  used to describe the subset of QOL directly
  related to an individuals health.

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MethodsConceptual Perspectives

• Cost Analysis
• Analytic perspective was that of the Canadian
  society. All costs incurred by parents or
  caregivers were assigned to the child as the unit
  of analysis.
• Human capital approach was used to measure
  productivity losses.

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MethodsSetting and Study Design

• Setting
• Urban and rural communities throughout Canada.
• Study Design
• Multiple cohort cross-sectional.

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Sample

• HRQL
• Children ages 8 to 21 years with FAS or FAE.
• COST
• Parents of children with FAS and FAE ages 1 to 21
  years.

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Inclusion Criteria Children

• Diagnosis of FASD.
• Eight (8) to 21 years of age.
• Able to understand English well enough to
  complete the questionnaire.

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Inclusion Criteria Parents

• Parents (biological, adoptive, or foster) of one
  or more children diagnosed with FASD.
• Living with the child who has FASD, or
  responsible for the care and welfare of that
  child.
• Able to understand English well enough to
  complete the questionnaire.

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Sample Size Calculation

• It was determined that a reduction of 0.06 in the
  quality of life utility score is clinically
  significant.
• SD of quality of life scores in a similar
  population of children was 0.21.
• Assuming an a of 0.05 and ß of 0.20 and a 2
  tailed test, it was necessary to interview 99
  participants.

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Data CollectionHRQL

• The Health Utilities Index Mark 3 (HUI3)
• A multi-attribute health status classification
  system.
• A multi-attribute utility function.

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Data Collection HUI3

• The health status classification system
  (questionnaire) is comprised of 33 questions that
  measures 8 health attributes.

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Data Collection HUI3

• Vision
• Hearing
• Speech
• Ambulation
• Dexterity
• Emotion
• Cognition
• Pain

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Data CollectionHUI3

• VISION
• 1. Are you able to see well enough to read
  ordinary newsprint without glasses or contact
  lenses? __ Yes __ No __ Dont
  Know __ Refused

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Data Collection HUI3

• The unique combination of responses of each set
  of questions in the HUI3 determines the level of
  the health attribute.
• Each attribute has five to six defined levels
  ranging from normal function to severe
  dysfunction.

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Attribute Levels Vision

• 1. Able to see well enough to read ordinary
  newsprint and recognize a friend on the other
  side of the street, without glasses or contacts.
• 2. Able to see well enough , but with glasses.
• 3. Unable to recognize a friend even with
  glasses.
• 4. Unable to read newsprint even with glasses.
• 5. Unable to read newsprint or recognize a friend
  , even with glasses.
• 6. Unable to see at all.

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Data CollectionCosts

• Health Services Utilization Inventory (HSUI)
• Twenty-five page inventory.
• Direct costs medical, education, social
  services, out-of-pocket costs to parents.
• Productivity losses.

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Data Collection HSUI

• If speech therapist selected
• How many visits did _________(name of child) have
  in the last 3 months? _______
• Where did this health visit take place?
• Private Office__________
• Hospital Clinic_________
• Emergency Room_________
• Other _________________(please specify)

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Data Analysis HRQL

• Health status of each child was described by a
  eight-element vector (x1, x2...and x8), in which
  xi represents the level (1 to 5, or 1 to 6) of
  the attribute i.
• A utility equation was applied to the
  multi-attribute health state description of each
  participant.
• Utilities were used to measure a single cardinal
  value between 0.0 and 1.0 (0 death 1
  perfect health) to reflect a HRQL score.

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DATA ANALYSIS CALCULATING HRQL SCORES

• X1 b1
• 1.00 1
• 0.98 2
• 0.89 3
• 0.84 4
• 0.75 5
• 0.61 6
• u 1.371 (0.75 x b2 x b3 x b4 x b5 x b6 x b7
  x b8) - 0.371

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Data Analysis HRQL

• Compare HRQL scores of children with FAS/FAE to a
  reference group (One sample t-test).
• Compare HRQL scores of children with FAS to those
  with FAE (t-test for independent groups).
• Correlate the child versus parent reports of HRQL
  (Pearson Correlation Coefficient).

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Data Analysis Cost

• Average annual total costs were calculated at the
  patient level by summing the costs for each child
  in each cost component and dividing by the sample
  size.

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HRQL Results Participants (n126)

• DIAGNOSIS
• FAS 56 (44 )
• FAE 70 (56 )
• RELATIONSHIP
• Biological 14 (11 )
• Adoptive 70 (56 )
• Foster 42 (33 )
• CULTURAL GROUP
• Native 57 (45 )
• Euro-Canadian 69 (55 )

• SEX
• Female 54 (43 )
• Male 72 (57 )
• AGE
• 8-12 48 (38 )
• 13-17 40 (32 )
• 18-21 38 (30)
• Age Mean 14.5 years

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Participants by Geographical Regions
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RESULTS MEAN HRQL SCORES
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MEAN SINGLE ATTRIBUTE UTILITY SCORES

• Attribute FAS/FAE
• Vision 1.00
• Hearing 0.99
• Speech 0.97
• Ambulation 1.00 Dexterity 1.00
  
• Emotion 0.76
• Cognition 0.83
• Pain 1.00

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Mean HRQLFAS/FAE versus Reference Group
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MEAN HQRL FAS versus FAE
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Child versus Parent Reports

• r 0.932

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Average Annual Total Costs

• Average annual unadjusted costs per case of FAS
  and FAE, ages 1 to 21 years, in Canada 13,109.

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Components of Direct Costs
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Contributors of Cost
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Adjusted Cost

• Severity of the childs condition, age of the
  child, and geographical setting significantly
  impacted on costs.
• The summary adjusted value of annual costs was
  14,342 (95 CI, 12,986 15,698.).

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Cost to the Nation

• Cost of FAS/FAE annually to Canada of those 1 to
  21 years old, was 344,208,000 (95 CI
  311,664,000 376,752,000).

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Total Life-Time Costs
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Conclusions

• Burden of prenatal exposure to alcohol is
  profound.
• First of such research on the topic of FAS.
• Anticipated by articulating the burden of
  prenatal exposure to alcohol, that this study
  will help children with FASD across Canada.

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Implications for Practice and Policy

• Less emphasis on behaviors and more on the
  emotional health of these children.
• Early diagnostic programs.
• Health and educational programs to build
  self-esteem and success.
• Programs to deal with anxiety and depression.

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Implications for Practice and Policy

• Emphasis on prevention strategies.
• Benefit of a particular prevention policy can be
  calculated.
• Decision-makers should be aware of the
  substantial long-term economic impact on parents.

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Implications for Research

• Evaluation of treatment and educational programs
  on HRQL.
• Impact of child-parent relationship on HRQL.
• Economic evaluations of primary and secondary
  prevention strategies.

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Implications for Research

• Future studies that include prospective data of
  costs in infancy.
• Methods used in the cost section could benefit
  from further research.
• More qualitative research.
• Development of a quality of life tool specific
  for children with FAS and FAE.

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Acknowledgement

• Research Training Grant, Hospital for Sick
  Children.
• Health Utilities Inc. for use of their tool
• Valerie Fine Award, Mount Sinai Hospital.
• Department of Pediatrics, St. Michaels Hospital.