Quality of Life & Premature Birth Outcomes

choose your own prognostic adventure!Deborah Gaebler, MD

XIII International ORITEL ConferenceFoundational and First General Assembly of the Latin American Academy on Child Development and Disability

QOL

• Definitions

• Tools to use

• Prognosis for premature babies

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?

International Classification of Function

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.

• 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.

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

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

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

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

Disability Paradox

persons with severe impairments may nevertheless report high levels of quality of

life (QoL)

Albrecht & Devlieger, Social Science & Medicine,1999

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

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 co-morbidities

Social-Emotional Development

Bjorgaas et. al., 2012

Kids with Cerebral palsy are more likely to have greater ADHD and peer

problems

“quality of life” is difficult to define uniformly for

All caregiversAll caregiversAll providersAll providers

All researchers All researchers

Preemies do pretty well-BUTSupport needed through the lifespan

Family & environmental context Family & environmental context matters! matters!

(perhaps most of all)(perhaps most of all)

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

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