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)