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Quality of Life & Premature Birth Outcomes
choose your own prognostic adventure!Deborah Gaebler, MD
Lurie Children’s Consultation:Baby born at ELBW (<1000 grams): parents want to understand her future Quality of Life?
QoL?
• What is meant by “quality of life”?
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
Who reports?• Child?• Parent?
Disability Paradox
persons with severe impairments may nevertheless report high levels of quality of
life (QoL)
Albrecht & Devlieger, Social Science & Medicine,1999
International Classification of Function
Function
amily
itness
un
riends
utureRosenbaum, 2011.
Function
amily
itness
un
riends
utureRosenbaum, 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
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.
Patrick & Erickson, 1993.
Patrick & Erickson, 1993.
• Sensation• Mobility• Emotion• Cognition• Self-Care• Pain• Fertility
Health Utilities Index Mark 3 (HUI 3)
Roberts, Journal of Pediatrics. 2013.
• 298 geographic cohort from Victoria, Australia
• Matched normal birthweight controls• 18 year follow-up
Extremely preterm <28 weeks
Roberts, Journal of Pediatrics. 2013.
Roberts, Journal of Pediatrics. 2013.
CHQ (Child Health Questionnaire)
• Family of QoL surveys for children 5-18 years
• Parent form: CHQ-PF50 & CHQ-PF28• Child form (over age 10): CHQ-CF87• Abbreviated child form to be
released
HealthActCHQ, Inc.
CHQ (Child Health Questionnaire)
HealthActCHQ, Inc.
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;
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;
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;
Educational Attainment
• 13% of children born <1000g have IQ <84
Hack, Future Child, 1995
Educational Attainment
• 13% of children born <1000g have IQ <84 • Higher percentage requiring special education
Lefebvre et. al. 2005
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
Engagement with
Community• No significant difference in independent living,
employment status, marital/cohabitation status, or parenthood
Saigal, Pediatrics, 2010
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
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
Hille, et. al.., Lancet, 2001
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
Social-Emotional Development
Bjorgaas et. al., 2012
Kids with Cerebral palsy are more likely to have psychiatric co-
morbidities
Social-Emotional Development
Bjorgaas et. al., 2012
Kids with Cerebral palsy are more likely to have psychiatric co-
morbidities
Social-Emotional Development
Bjorgaas et. al., 2012
Kids with Cerebral palsy are more likely to have psychiatric co-
morbidities
Literature Cited1. Albrecht, G., & Devlieger, P. (1999). The disability paradox: High quality of life
against all odds. Social Science and Medicine, 48, 977–988. 2. Bjorgaas et al. 2012 Psychiatric disorders among children with cerebral palsy at
school starting age. Research in Developmental Disabilities 33 (2012): 1287-93.3. Doyle LW, Casalaz D. Outcome at 14 years of extremely low birthweight infants: a
regional study. Arch Dis Child Fetal Neonatal Ed. Nov 2001;85(3):F159-164.) 4. Hille ETM, Weisglas-Kuperus N, van Goudoever JB, et al. Functional outcomes and
participation in young adulthood for very preterm and very low birth weight infants: The Dutch project on preterm and small for gestational age infants at 19 years of age. Pediatrics 2007; 120(3): E587-E95.
5. Horsman J, Furlong W, Feeny D, Torrance G. The Health Utilities Index (HUI): concepts, measurement properties and applications. Health and quality of life outcomes 2003; 1: 54-.
6. Moster D, Lie RT, Markestad T. Long-term medical and social consequences of preterm birth. New England Journal of Medicine 2008; 359(3): 262-73.
7. Roberts G, Burnett AC, Lee KJ, et al. Quality of Life at Age 18 Years after Extremely Preterm Birth in the Post-Surfactant Era. Journal of Pediatrics 2013; 163(4): 1008-+.
8. Rosenbaum P, Gorter JW. The 'F-words' in childhood disability: I swear this is how we should think! Child Care Health and Development 2012; 38(4): 457-63.
9. Saigal S, Hoult LA, Streiner DL, Stoskopf BL, Rosenbaum PL. School difficulties at adolescence in a regional cohort of children who were extremely low birth weight. Pediatrics. Feb 2000;105(2):325-331.)
10.Saigal S, Stoskopf B, Pinelli J, et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood. Pediatrics 2006; 118(3): 1140-8.
“quality of life” is difficult to define uniformly for
All caregiversAll caregiversAll providersAll providers
All researchers All researchers
Preemies do pretty darn well
Family & environmental Family & environmental context matters! context matters!
(perhaps most of all)(perhaps most of all)