Presentación realizada en el Congreso ORITEL

1. Quality of Life & Premature Birth
Outcomes
choose your own prognostic adventure!
Deborah Gaebler, MD
XIII International ORITEL Conference
Foundational and First General Assembly
of the Latin American Academy on Child
Development and Disability

2. QOL
• Definitions
• Tools to use
• Prognosis for premature babies

3. Lurie Children’s Consultation:
by born at ELBW (<1000 grams): parents want to understand her future Quality of

4. QoL?
• What is meant by “quality of life”?

5. QoL
Individuals’ perception of their position in life in the
context of the culture and value systems in which
they live and in relation to their goals, expectations,
standards and concerns. It is a broad ranging
concept affected in a complex way by the person’s
physical health, psychological state, level of
independence, social relationships, personal beliefs,
and their relationship to salient features of their
environment.
World Health Organization, www.who.int/mental_health/media/68.pdf

6. Who reports?
• Child?
• Parent?

7. International Classification of
Function

8. Health-related quality of life
• “the value assigned to duration of life as modified
by the impairments, functional states, perceptions,
and social opportunities that are influenced by
disease, injury, treatment, or policy.”
• Health Utilities Index Mark 3 (HUI 3)
Patrick & Erickson, 1993.

9. Patrick & Erickson, 1993.
• Sensation
• Mobility
• Emotion
• Cognition
• Self-Care
• Pain
• Fertility
Health Utilities Index Mark 3 (HUI
3)

10. Roberts, Journal of Pediatrics. 2013.
• 298 geographic cohort from Victoria,
Australia
• Matched normal birthweight controls
• 18 year follow-up
Extremely preterm <28 weeks

11. Roberts, Journal of Pediatrics. 2013.

12. Roberts, Journal of Pediatrics. 2013.

13. Systematic Psychometrics of QOL
in CP
Carlson, Shields et al BMC 2010
• Identified 5 tools:
• CP CHILD and CPQOL strongest
• internal consistency and concurrent validity,
test retest reliability

14. Quality of Life and CP-
Hearing the voices
Varni, et al DMCN 2005
• HRQL-lower—makes sense due to physical
limitations
• Parent’s and Child variance on social
emotional
• Parent’s rate QOL lower

15. Parents Quality of Life
• Using the Kidscreen
• Physical well-being
• Psychological well-being
• Mood and emotions
• Self-perception
• Autonomy
• Parent relations/home life
• Financial resources
• Social support and peers
• School environment
• Social acceptance
• Even those with greater severity have good QOL
• Parental stress-drives QOL
Parkes,Beckung et al Pediatrics 2008

16. QOL-related to well being
• ‘good’ state of well-being was associated with
a sense of balance between body, mind, and
spirit
• ‘poor’ well-being was linked to the presence
of chronic conditions such as pain, fatigue,
and communicative barriers
Developmental Medicine & Child Neurology 2007, 49: 225–231

17. Disability Paradox
persons with severe impairments may
nevertheless report high levels of
quality of life (QoL)
Albrecht & Devlieger, Social Science & Medicine,1999

18. Neurosensory impairments
• % cerebral palsy
– Estimates show 7-13% of infants with
ELBW have cerebral palsy
• % blindness
– 1-5% with blindnesss
• % deafness
– 5-10% hearing loss
Lefebvre et. al. 2005 ; Doyle , 2001;

19. Neurosensory impairments
• % cerebral palsy
– Estimates show 7-13% of infants with
ELBW have cerebral palsy
• % blindness
– 1-5% with blindnesss
• % deafness
– 5-10% hearing loss
Lefebvre et. al. 2005 ; Doyle , 2001;

20. Neurosensory impairments
• % cerebral palsy
– Estimates show 7-13% of infants with
ELBW have cerebral palsy
• % blindness
– 1-5% with blindnesss
• % deafness
– 5-10% hearing loss
Lefebvre et. al. 2005 ; Doyle , 2001;

21. Educational Attainment
• 13% of children born <1000g have IQ <84
Hack, Future Child, 1995

22. Educational Attainment
• 13% of children born <1000g have IQ <84
• Higher percentage requiring special education
Lefebvre et. al. 2005

23. Educational Attainment
• 13% of children born <1000g have IQ <84
• Higher percentage requiring special education
• Lower rates of high school graduation
Lefebvre et. al. 2005 ; Moster, et. al. 2008 ; Hack, et. al. 2002

24. Engagement
with
Community
• No significant difference in independent living, employment
status, marital/cohabitation status, or parenthood
Saigal, Pediatrics, 2010

25. Engagement
with
Community
• No significant difference in independent living, employment
status, marital/cohabitation status, or parenthood
• Other studies show lower likelihood of partnership and
having children
Moster, et. al. 2008

26. Social-Emotional
Development
Hille, et. al.., Lancet, 2001
• Prospective study of 408 previously ELBW children
• Follow-up at age 8-10
• Child Behavior Checklist used to define behavior problems
• 4 countries: Netherlands, Germany, Canada, United States
• Compared to NBW controls in each country
• Enabled cross-cultural comparison

27. Social-Emotional
Development
Hack, et. al., 2009
• Generally, increase in behavior and attention problems
(ADHD) and autism spectrum disorder
• No difference in internalizing disorders (depression)
• Adolescents tend be less likely to have risk-taking behaviors

28. Social-Emotional
Development
Bjorgaas et. al., 2012
Kids with Cerebral palsy are more likely to have
psychiatric co-morbidities

29. Social-Emotional
Development
Bjorgaas et. al., 2012
Kids with Cerebral palsy are more likely to have
co-morbidities

30. Social-Emotional
Development
Bjorgaas et. al., 2012
Kids with Cerebral palsy are more likely to have
greater ADHD and peer problems

31. “quality of life” is difficult to
define uniformly for
All caregiversAll caregivers
All providersAll providers
All researchersAll researchers

32. Preemies do pretty well-BUT
Support needed through the
lifespan
Family & environmentalFamily & environmental
context matters!context matters!
(perhaps most of all)(perhaps most of all)

33. F
unction
amily
itness
un
riends
uture Rosenbaum, 2011.

34. F
unction
amily
itness
un
riends
uture Rosenbaum, 2011.
What people do:
work, school, play
Child in context of family:
Support, participation, roles
Health promoting recreation
beyond therapies
Child-directed activities;
what do THEY like to do?
Nurturing peer
relationships
Dreams, goals

35. For those Children With CP
• decreased QOL and HRQOL compared with a
normative population in some but not all
areas of well-being
• Gross Motor Function Classification System
are reliable indicators of variations in physical
function do not correlate consistently with
psychosocial well-being
• QOL is a life span event!
• Ask PERSON and Parents