Adult functioning and Quality of Life of former Extremely Low Birthweight Infants

1

• Adult functioning and Quality of Life of former
  Extremely Low Birthweight Infants
• National Symposium on Adult Outcomes of Former
  Premature Infants
• Hillerød, Denmark
• September 17th, 2009
• Saroj Saigal, MD
• McMaster University, Hamilton, Ontario, Canada

2
Enkelte dias er udeladt p.g.a. indhold af
patientbilleder eller potentielt identificerbare
persondata
3
Session objectives

• To present outcomes of extremely low birthweight
  infants to adulthood from two different
  perspectives
• Biomedical model conventional approach to
  reporting morbidity
• Social science paradigm perspectives of
  individuals on their own QoL

4
The Past
5
Early controversies about the outcome of low
birthweight infantsPessimistic View

• From the point of view of social economics
  and race hygiene, the raising of small and weak
  premature infants is not advisable.
• - Arvo Yllpo, 1923

6
Early controversies about the outcome of low
birthweight infantsPessimistic View

• In brief, the immature infant becomes the
  backward school child, and is a potential
  psychopathic or neuropathic patient, and even a
  potential candidate for the home for imbeciles
  and idiots.
• - Arnold Capper, 1928

7
Early controversies about the outcome of low
birthweight infants Optimistic View

• Present data, though scant and sometimes
  contradictory, indicate that prematurity of birth
  itself does not markedly distort, hasten, or
  retard the course of mental development, when the
  age of the infant is reckoned from conception.
• - Arnold Gessell, 1932

8
Predictions about the outcomes of low birthweight
infants 2000

• It is likely that half of the graduates from
  the early era of intensive care will not be able
  to become fully independent adults.

Walther et al, POPS Study 2000
9
Approaches to measure outcomes

• 1. Health Objective diagnostic measures (CP,
  blind)
• 2. Functional performance defined activities
  e.g. climbing stairs extremely relevant
• 3. QoL Patients own valuation - subjective
  rating - of their perceptions of their symptoms,
  functioning and values

Gill Feinstein, 1994, JAMA
10
Health Status / Functional Status / and QoL

• These 3 concepts are used interchangeably to
  refer to the same domain of health
• However, these concepts are clearly different and
  should be used appropriately

Guyatt et al, 1993
11
1. Health Objective measurement of CP

• CP is the most common motor disability of
  childhood.
• Definition a disorder of movement and posture
  due to a defect/ lesion in the immature brain Bax
• Inter-observer agreement is generally poor
  Paneth
• Assessment by physician / OT/ PT necessary

12
2. Function levels of mobility

• Able to walk, bend, lift, jump and run normally
  for age
• Able to do above with some limitations but does
  not require help
• Requires mechanical equipment (canes, crutches,
  braces or wheelchair) to walk or get around
  independently
• Requires above, as well as the help of another
  person to get around
• Unable to control or use arms and legs

L1
L2
L3
L4
L5
HUI ,Feeny et al, 92
13
3. So, what is Quality of life?

• QoL is a difficult concept to define and to
  measure, and to date there is no consensus
• WHO 1947 .the state of complete physical,
  mental and social well-being and not merely the
  absence of disease or infirmity

14

• Biomedical Model of Outcomes
• Conventional approach from the perspective of
  health professionals

15
Outcomes during infancy

• Outcomes include survival and serious
  neurodevelopmental impairments (NDI)
• Striking improvement in survival in mid-1990s 24
  wks GA 16-70 26 wks GA 53-88
• NDI 21-35 for ? 26 wks GA CP rates have fallen
  / remained stable / increased Saigal Doyle08
• Centres that offer IC selectively have a lower
  survival rate, but also lower prevalence of
  disabling CP (Netherlands vs US) Lorenz01
• Early assessments of cognition are imprecise and
  should be used with caution for predictive
  validity. Hack 05

16
School-age outcomes

• Mean IQs of ELBW infants shown to be 12-17 points
  lower than term peers Saigal 91 smaller
  difference in Australian children Anderson
  Doyle 04
• A difference of 10 points has been found in
  sibling-control studies. Kilbride 04
• The magnitude of difference in IQ places the
  preterm infant at a distinct disadvantage in the
  classroom Aylward 02, Anderson 03,Saigal 91,
  2000, Hack 05
• Significantly higher prevalence of attentional
  problems and remedial assistance/ grade
  repetition. Saigal 91, 03, Marlow 05, Doyle
  05

17
Outcomes during adolescence

• Persistence of school difficulties and greater
  requirements of remedial assistance.
• Difference in mean IQ between ELBW and controls
  remained at 13 points inverse BW / GA gradient
• Even neurologically intact teens with normal IQs
  performed less well on achievement measures
• Other deficits visual-motor function, perceptual
  planning, math, and Executive Functioning.

Botting 98, Saigal 2000, Anderson 04, Bhutta 02
18
Drs. Saigal, Pinelli, Paneth, Boyle, Streiner,
Goddeeris, et al.
19
Background Traditional markers of successful
transition to adulthood

• Completing education.
• Working full-time/financial independence.
• Leaving the parental home.
• Getting married.
• Having a child.
• (currently YAs consider first 3 items very
  important, marriage/ parenthood less so)

Furstenburg FF et al. Growing up is harder to do.
Contexts 2004333-41
20
Percentage of Young Americans who consider the
following as Important Markers of Adulthood
97
96
82
55
52
Source General Social Survey, 2002, US
21
Participants ELBW YA
Prospective longitudinal population-based
study 1977-82 births

• Of 179 survivors, 13 died (5 severe NSI)
  Neurosensory impairments (NSI) were identified in
  46/166 (28) survivors.
• 149/166 YA participated, including 40/46 YA with
  NSI, at a mean age of 23.3 years.

Participation Rate 90
22
Participants NBW YA
Controls recruited at age 8 years and followed
longitudinally 1977-82 births

• Of 145 NBW, 3 had NSI (2) none died.
• 133/145 YA participated, including all 3 with
  NSI, at a mean age of 23.7 years.

Participation Rate 92
23
Neurosensory impaired subjects

• Unless otherwise stated, data are presented on
  ALL participants, inclusive of subjects with
  neurosensory impairments (NSI).
• Except for sensitive personal items, parental/
  caregiver proxy responses of 7 severely impaired
  ELBW YA were utilized to provide an unbiased
  picture of the overall outcomes.
• Valid structured questionnaires with face-to-
  face interviews by masked lay professional
  interviewers.

24

• Educational Attainment

25
High School graduation ELBW NBW
Ontario Completed n 149 n 133 n 146,000
High School
Yes 82 87
90 No 13 13 9 Special Progr.
5 0 - Between
groups P .03 (P NS when NSI
excluded) Within ELBW group, fewer boys completed
HS, P .03 (data not shown) Youth in Transition
Survey (YITS), 2004
26
Educational attainment to date

• Highest Education ELBW NBW
• Achieved n149 n133
• lt High school 15 11
• High school completed 24 25
• Trade Certificate 5
  5
• Community college diploma 19 14
• University completed 5 14
• Still in school (post-secondary) 32
  33
• P NS mutually exclusive

27
Employment Status
28
Current employment/school status

• ELBW NBW
• n 149 n 133
• Permanently Employed 48 57
• PT employment in school 13 17
• Not employed in school 13 11
• Unemployed, not in school 26 15
• PNS 3 ELBW in sheltered workshops
• Between group, gender differences in employment
  were seen only among females (P.001)
• Among unemployed, 12 ELBW vs 2 NBW had
  disabling/ chronic illness

29
Living Arrangements Marriage Parenthood
30
Current living arrangements at YA

• 
  ELBW NBW Canada 3
• n 149 n 133
• 
  
• Lives in parental home 55 47
  58
• Lives independently 1 42 53
  -
• Special Living 3 0
  -
• arrangements 2
• PNS
• 1 alone/ with partner/ with unrelated people
• 2 3/149 ELBW in a group home, 1/149 in
  supervised apartment
• 3 2001 Stats Canada, age 20-24

31
Romantic relationships at YA

• ELBW NBW
• n 1411 n 133
• Dates rarely or not at all 38
  30
• Casual dating 12
  11
• Committed relationship 2 50 59
• P NS
• 1excludes 8 severely disabled YAs with NSI
• 2 included those already married

32
Marital status and parenthood at YA

• ELBW
  NBW Canada1
• n 149 n 133
• Never been married 77 75 80
  2
• Married 10 7
  3
• Cohabiting 13 18
  17
• Became a parent 11 14
  -
• PNS
• 1 2001 Stats Canada, age 20-24
• 2 Not married when census data collected

33
Sexual orientation and activity at YA

• ELBW NBW
• n 141 n133
• Heterosexual 92 98
• Non-heterosexual 7
  2
• Questioning 1 0
• Sexually active 62 87 lt.001
• P NS (Holm adjustment for multiple testing)
• excludes 8 severely disabled YAs with NSI
• Gender non-heterosexual / questioning - mostly
  female

34
Markers achieved by ELBW YA with without
disabilities

• NSI NSI -ve
• Markers n 40 n 109
• Completed high school 68
  87
• Completed University 10
  4
• Living Independently 33 46
• Permanently employed 38 51
• Married / cohabiting 10 28
• Becoming a parent 10 11

35
Young Adulthood Risk-Taking Behaviours

• VLBW YAs have a lower prevalence than NBW of
  alcohol consumption, smoking, marijuana use,
  contact with police, convictions / incarcerations
  (but not of unprotected sex!).
• However, whether these behaviours are due to
  increased parental monitoring, lack of
  opportunities (particularly for those with
  disabilities) or development lags, is unclear.

Hack 02, Cooke 04, Saigal 06
36
Other studies on adult outcomes of premature
infants
37
Outcomes at young adulthood US and UK VLBW
infants

• Although fewer Cleveland VLBW than NBW were
  enrolled in post-secondary education, a
  significant majority had completed high school
  (74 vs 83, P 0.04).Hack 02
• Similar findings reported from Liverpool in
  non-disabled VLBW, with a higher proportion in
  vocational schools / unemployed Cooke04
• Males fared less well in both studies.

38
Studies with linkage of National Comprehensive
databases

• Advantages large data bases, minimal losses to
  follow-up, comparisons with wide range of GA,
  extremely cost-effective
• Disadvantages lack of information on severity
  of disabilities, functional capacities,
  behavioural and emotional issues, possible
  misclassification of some diagnoses, limited
  parental and social data.

Moster et al, NEJM 2008359262-73
39
Swedish Norwegian YA epidemiological studies

• Preterm birth was associated with a step-wise
  increase in disability, decreased chance of
  completing university education and lower net
  income
• Greatest impact at 24-32 wks GA. However, the
  large majority were employed and contributed more
  in income tax than they received in benefits
• Reproductive rates lower in preterm females Swamy
  08
• Despite the higher prevalence of disabilities, a
  large proportion of YA born prematurely completed
  HS and were functioning well

Lindstrom et al, Pediatrics 200712070-77
Moster et al, NEJM 2008359262-73
40
Longer term perspectives

• These achievements attest to the extraordinary
  resilience of the survivors.
• Future of premature children has to be looked at
  from a lifespan perspective as recovery may not
  be evident until early adulthood. Werner01,
  Luciana 03
• Had follow-up studies not been performed to
  adulthood, we might never have known the extent
  of recovery and adaptation to life reported in
  recent studies Saigal Rosenbaum 07

41

• Social Science
• Paradigm

42
Why measure QoL a shift in thinking

• Measures of disease status above are insufficient
  to capture the personal burden of illness.
• Quality of life factors such as pain,
  apprehension, functional impairments, difficult
  to fulfilling personal and family
  responsibilities, and the consequent financial
  burden must also be considered.
• It is important to determine the impact that
  illness and treatments have on the daily life and
  life satisfaction of an individuals
  health-related quality of life.

Muldoon, BMJ 1998
43
Quality of life definition

• QoL is a broad, multi-dimensional construct,
  that is influenced by ones personal values
  attached to many different aspects of life, of
  which health is only one factor i.e. notion of
  holistic well-being.
• QoL refers to subjective well-being i.e. how
  happy or satisfied a person is with life as a
  whole

44
QoL construct

• It is multi-dimensional (physical,
  psychological, environmental, social, spiritual)
• It is subjective (can include objective
  information)
• It is highly personalized
• It includes both positive (role functioning,
  contentment, mobility) and negative (negative
  feelings, required medications, fatigue, pain)
  facets of life
• It may fluctuate over time due to changes in
  health/ life events/ adaptation/ response shift

WHOQOL Group Position Paper, Soc Sci Med
1995411403-9
45
What is Health-Related Quality of life?

• Health-related quality of life (HRQL) focuses
  only on those aspects of QoL that are
  specifically related to health-related components
  that are judged to be associated with life
  satisfaction of an individual
• They also implicitly reflect personal valuation
  of outcomes that may not be directly observable
  by a third party
• They are unrelated to disease state or severity

46
Concept of Health-related Quality of life

• .. an attempt to quantitate in scientifically
  analyzable terms the net consequences of disease
  and its treatment on the patients perception to
  live a useful and fulfilling life.

Schipper et al, QoL and pharmacoeconomics, 1996
47
QoL for Children

• includes, but is not limited to, the childs
  perception of their social, physical, and
  emotional well-being, and as such is sensitive to
  the changes that occur throughout development.
• B.Cadlyn A.S. 96

48
Who judges HRQL of children?

• Health professionals?
• Parents of patients?
• General public parents?
• Lay public?
• Children?

49
Limitations of children as respondents

• Children are constantly developing and their
  person values and desires also evolve and change
  over time.
• Inability to get childrens perspective ltage 5
  yrs
• Ironically, where information is most pertinent
  for decision-making, as in severely disabled
  children (or adults), it may not be possible to
  get the personal perspective.
• Proxy measures are therefore often necessary
  parent, caregiver, teacher, health professional

50
Can parents rate their childs HRQL?

• Children and adults do not share a similar
  framework
• Level of agreement depends on the domain
• Consistent agreement for observable functioning
  (physical health) than non-observable
  functioning (emotional or social health)
• Agreement is better between parents of
  chronically sick children vs healthy children

Eiser and Morse, 2001, Systematic Review Qol. Res
51
Differences in proxy responders of child HRQL

• Parents views may be informed by the burden of
  caregiving and their own mental health
• Medical / nursing staff may have limited
  perceptions of the childs HRQL
• Teachers perceptions may be based on a broader
  cross-section of children
• Parents may answer questions in ways that
  present themselves favourably.

Eiser and Morse, 2001, Qol Res. Addington-Hall
and Kaira, 2001
52
Usefulness of proxy measures

• Adults can substitute for ratings by children
  and provide useful complementary information from
  another perspective
• There remain strong arguments for obtaining HRQL
  information from both parents and children, and
  whenever possible, by multiple respondents.
• It is naïve to expect very close
  correspondence
• between different responders.

Eiser and Morse, 2001, Qol Res.
53
Clinical Problem

• J., a 16-year-old girl recovering from
  surgery to remove bone tumour from leg diseased
  bone replaced with metal prosthesis.
• Six months later.

Eiser and Morse, 2001, Qol Res.
54
Parents Perspective of HRQL

• J. is often sick and not back at school
  full-time she can ride a bike in physiotherapy,
  but not on the road she sees friends only if Dad
  drives her her bedroom is relocated downstairs.

Eiser and Morse, 2001, Qol Res.
55
Childs Perspective of HRQL

• J. thinks she is making an excellent
  recovery she has some difficulty running, but
  otherwise can ride her bike, goes out with
  friends and does everything she wants to do

Eiser and Morse, 2001, Qol Res.
56
Optimal Age for Measurement of HRQL in Children

• It is not possible to accurately obtain the
  personal perspectives of children lt 7 years
• Children as young as 7, however, are able to
  answer questions about their health status
• For more sophisticated measures to elicit
  preferences (FT/ CB), a minimum of grade 2-6
  reading skills are requiredJuniper

57
Limitations of Current HRQL Measures

• Most of available HRQL measures focus on how
  children are functioning in each domain and
  ability to carry out age-appropriate roles
• Unless the values of individual subjects are
  obtained, these measures are tapping health
  profiles, they are not measuring HRQL per se

Guyatt, 1993
58
Critique of current Qol measures

• While impairments and functioning may have an
  impact on QoL, they are not synonymous with it.
  Hunt SM 97
• - a meta-analysis of adult studies found
  them to be distinct
• concepts Smith KW 99
• - in a study of children with CP,
  functioning was weakly related to
• QoL Rosenbaum PL, 07
• QoL measures are needed to provide an evaluation
  that is separate from the biomedical health
  state, and, that focuses on the personal
  well-being of an individual, and their feelings
  and perceptions about life.

59
Barriers in HRQL Assessment

• Few psychometrically sound HRQL measures
  available
• Practical problems of amount of time for
  administration, scoring and interpretation
  (patient and HP time)
• Self-reported HRQL measures continue to be viewed
  with skepticism by the medical community and by
  some parents

Eiser and Morse, 2001 JDBP
60
Consumer Perspectives McMaster Studies
61
Steps In Direct measurement of HRQL

• First, the teens subjectively defined health
  state was determined using an HUI-Mark II
  multi-attribute health classification system
  consisting of 6 attributes, each with 4 -5
  defined levels
• Sensation, mobility, emotion, cognition,
  self-care and pain

Feeny et al, 92
62
Steps In Measuring HRQL Of Teens/ Hypothetical
Health States

• We then utilized two preference measurement
  techniques to quantify the teens own
  self-reported health state.
• The teens and parents were asked to imagine
  themselves living their own / own childs
  health state, or the hypothetical health states
  for the next 60 years

63
Feeling Thermometer
64
(No Transcript)
65
Self-reported MAHS in ELBW NBW YA
P lt.001
Percentages
P lt .001
Pain
Sensory
Mobility
Emotion
Cognition
Self-care
Saigal S et al Pediatrics 2006 1181140-1148.
66
Self-reported HRQLTeen YA

• Age ELBW
  NBW
• Mean (SD)
  Mean (SD) P
• Teen 0.87 (0.23) 0.93 (0.11)
  0.02
• Young Adult 0.85 (0.26) 0.88
  (0.24) NS

Scale 0 dead 1.0 perfect health,using
Standard Gamble technique.
Proxy responses from 9 severely disabled ELBW
Saigal et al, JAMA 96
67
Self-Reported HRQL at Young Adulthood Standard
Gamble (SG)
Includes states worse than dead (ELBW 2 NBW
2) Saigal et al. Pediatrics 20061181140-48.
68
Health States Worse Than DeadTeens Perspective

• Proportion who reported one or more
• health states to be worse than death
  (CB)
• Health State ELBW Control
• Teen
• Hypothetical 50 50
• Own health 0.7 0
• Young Adult
• Own health 3.0
  2.0

Saigal et al, JAMA 96
69
Conclusions HRQL Teen and YA

• ELBW teenagers and YA appear to place a high
  valuation on their own health status, despite
  recognition of their disabilities Saigal et al,
  JAMA, 1996
• For the overwhelming majority, it was difficult
  to distinguish ELBW respondents from controls.
• For an important minority, however, HRQL among
  ELBW teens and YA was much lower
• The similarities of HRQL at the two ages attest
  to the robustness of the measure and our
  findings.

70
Conclusions HRQL Teen and YA

• This positive self-perception is important and
  may differ from the values placed by other
  assessors for the same health state
• Indeed, within the ELBW group, the same health
  state was assigned a different utility score by
  different respondents
• Directly measured preferences are preferable at
  an individual level Saigal et al, JAMA 96
• Recently, several studies have confirmed that
  most individuals with disabilities provide high
  ratings for their QL.

71
Self-Reported HRQLby Children

• Children can adapt positively to their situations
  after major stress or injury
• Childrens views about their disability are
  important and cannot (and should not) be
  discounted.

Eiser and Morse, JDBP, 2001 1994
72

• investigators may forget that unlike beauty
  that lies in the eyes of the beholder, quality of
  life is inherently an attribute of the patient
  (or beholdee)

Gill MT Feinstein AR, JAMA 94
73
Whose values of HRQL should be considered?

• Clinicians would do well to remember that when
  their assessment of QoL is at odds with those of
  the patient, it is the patient who should have
  the final word.

Addington-Hall and Kalca 2001, BMJ
74
Attitudes Of The Disabled Persons

• The anomaly is that patients perceptions of
  personal health, well-being and life satisfaction
  are often discordant with their objective health
  status and disability

Albrecht and Higgins, 1977 Albrecht, 1994
75
High Quality Against All Odds

• Why do so many people with serious and
  persistent disabilities report that they
  experience good or excellent quality of life when
  to most external observers these people seem to
  live an undesirable daily existence?

Albrecht and Devlieger, 1999
76
Results Chicago Study

• 54.3 of the persons with serious disabilities
  reported a good to excellent QoL compared with
  80 - 85 of persons with no disabilities (from
  national surveys)

Albrecht and Devlieger, 1999
77
Comments By Disabled Persons Good QoL

• People look at me with my chronic obstructive
  pulmonary disease and think what a poor bastard -
  Im glad I am not in his shoes. They dont
  understand. Visually, you see an oxygen bottle,
  impairments and limits, but the spirit is
  boundless. I am not going to stop me from living
  a full and meaningful life.

Albrecht and Devlieger, 1999
78
Comments By Disabled Persons Poor QoL

• With CP like I have, I cant even communicate
  with many people. They think that because I
  cant talk clearly that Im stupid. I feel
  trapped in my own body and brain with no good way
  to get out. Its lonely in there.

Albrecht and Devlieger, 1999
79
Disability Paradox

• A disability paradox exists. The high QL
  reported by some respondents could be due to
  secondary gain which occurs when individuals
  with impairments adapt to their new condition,
  reinterpret their lives and reconstitute personal
  meaning in their social roles.

Albrecht and Devlieger, 1999
80
HRQL Scores Teens and Parents

• Utility Scores
• Mean SD
• ELBW
• Teens Own 0.87 (0.26)
• Parents own child 0.91 (0.20)
• Control
• Teens Own 0.93 (0.11)
• Parents own child 0.97 (0.08)

Saigal et al, Pediatrics 2000
81
Jamie
Chris

• Can see, hear, and talk normally
• Needs help or other person and equipment to walk
• Sometimes angry, worried, or sad
• Learns, does school-work normally without special
  help
• Eats, bathes, dresses, and uses toilet normally
• Free from pain

• Can see, hear, and talk normally
• Can walk, bend, lift, jump, and run normally
• Happy, not worried most of the time
• Learns, does school-work more slowly than rest of
  class
• Eats, bathes, dresses, and uses toilet normally
• Free from pain

Pat
Sandy

• Blind, deaf, or unable to talk
• Needs equipment, but not help of others, to walk
• Happy, not worried most of the time
• Learns schoolwork very slowly and needs help
• Needs help to eat, bathe, dress, or use toilet
• Sometimes has pain doesnt interfere

• Problem seeing, hearing, or talking even with
  aids
• Needs equipment, but not help of others, to walk
• Sometimes angry, worried, or sad
• Learns schoolwork very slowly and needs help
• Needs equipment to eat, bathe, dress, or use
  toilet
• Sometimes has pain doesnt interfere

82
Implications of Differences in Preferences

• Results of this study could be used
• To make HPs and Parents aware of differences
  in preferences within and between groups
• Underscore the need for deliberations at an
  individual level in counseling future parents
  facing complex decisions about neonatal intensive
  care

Saigal et al, JAMA 19992811991-97
83
Teen QL clinical application

• great deal of caution should be exercised in
  clinical application of these findings
• It is not our intention to recommend NIC to all
  infants regardless of BW
• Unknowns factors contributing to positive
  self-perception, family impact, role of parents
  and society, economic implication and stability
  of preferences.

Saigal et al, JAMA 1996
84
Still unknown

• Are there any racial / cross-cultural
  differences?
• Do sex and SES impact on QoL?
• How and why do some individuals with significant
  disabilities experience a good QoL, and what
  factors contribute to the same?
• What interventions might benefit those of
  experience or are at risk for poor QoL?
• Would parental preferences have been the same had
  they been taken at birth of ELBW?

Saigal and Tyson, Semin Perinatol 2008
85
Stability of preferences over time Hypothetical
Health States
U t i l i t y S c o r e s
Pat
Sandy
Jamie
Alex
Chris
Saigal et al, Arch Pediatr Adolesc Med
2003157261-69
86
Stability Maternal preferences

• Maternal (?paternal) preferences appear to be
  relatively robust and not subject to external
  forces as assumed or feared
• Health professionals have an increasing
  obligation to seek, understand and use parental
  values and wishes in shared decision-making in
  the perinatal period

Saigal et al, Arch Pediatr Adolesc Med
2003157261-9
87
Summary and Conclusions
88
Summary

• It appears that by parent report HRQL/ QoL is
  lower for VLBW in the early years, possibly due
  to the burden of caregiving.
• The impact diminishes over time. ? True
  different or other factors such as acceptance or
  recalibration?
• Most studies show that at YA there is little if
  any difference in HRQL between VLBW NBW
  respondents and between disabled and non-disabled
  persons.
• HRQL is rated lower by proxies
• Health professionals provide lower scores for
  severely disabling health states than parents and
  children.

89
Conclusions

• Self-reported HRQL measures can provide important
  complementary information to traditional
  objective measures of outcomes
• QOL measures can seem nebulous and unscientific
  compared with traditional end-points, but
  subjective outcomes in the end may be more
  important
• Individuals with disabilities can lead a better
  life given support and opportunities.

Eiser and Morse, 2001, JDBP
90
Take home message for health professionals and
parents

• VPT infants go through significant neonatal
  morbidity and challenges on whether to support
  intensive care parents suffer enormous stress
• A significant proportion of VPT infants may have
  neurosensory problems and learning difficulties
  (hidden disabilities) and behavioural problems.
• Most studies to adulthood show that the majority
  of VPT YA are functioning reasonably well in
  society in terms of education and employment.

91
Take home message for health professionals and
parents

• Health professionals should be up to date with
  current survival and morbidity.
• Decisions regarding ongoing support of intensive
  care in infants of borderline viability should be
  made in conjunction with informed parents.
• Parents should be made aware that studies show
  that despite disabilities, both parents and
  children place a high valuation on their QL.
• Parental decisions and choices should be
  supported within limits.

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Canadian Arctic Hares