Measuring Health-Related Quality
of Life in Children and
Adolescents
Anne Klassen
Veronica Schiariti
Jill Zwicker
Workshop Presenters
Anne Klassen, Associate Professor of Pediatrics at McMaster
University. Interests include developing, validating and using
HRQOL instruments in clinical and population-based studies.
Veronica Schiariti, Paediatrician & PhD student working as a
Research Associate in the CYDiS research unit at BC
Children’s Hospital. Interests are health services research and
measuring HRQOL of high risk populations of infants and
children.
Jill Zwicker, OT & PhD student in Rehabilitation Sciences at UBC
& CIHR Quality of Life Strategic Training Fellow. Her interests
include measuring HRQOL of children with developmental
coordination disorder
Today’s Workshop
1) Issues specific to understanding and measuring
HRQOL in children and adolescents
2) HRQOL of preschoolers admitted at birth in 1996–
1997 to a tertiary NICU in BC
3) Systematic review of HRQOL studies of children,
adolescents and young adults born preterm and/or
at very low birth weight
Measuring HRQOL in Children and
Adolescents
Anne Klassen, DPhil
Associate Professor, Pediatrics
McMaster University
May 2008
Child Welfare Officials to Make Sure Boy They Seized Gets
Chemo – CBCnews.ca, Friday May 9, 2008
Child welfare officials have taken temporary custody of an 11-year-old Ontario boy to ensure he
undergoes chemotherapy after his father decided to take him off treatment for his aggressive form of
leukemia. A father who cannot be identified says his son is being treated 'like a prisoner' at the hospital
where he is being treated for leukemia. His father … told CBC News on Friday that the boy didn't want to
continue with the treatments.
"I think about the first time around, what it did to him and how it almost killed him, and when he told me
he doesn't want it anymore. He doesn't want to die this way. He would rather die at home in a peaceful,
comfortable way.“
The dad, who lives in Hamilton, was briefly shackled by security when he arrived at McMaster Children's
Hospital on Thursday with his son for what he believed was a routine appointment. Local Children's Aid
Society officials then took custody of the boy due to the father's refusal to admit the son for another
round of chemotherapy.
"He had a 50 per cent chance of survival if the treatment was carried out. If the treatment was not carried
out, then in fact his chance of survival would be not good. In fact they estimated it would be fatal in six
months.“
But the father said doctors told him the boy had a 20 per cent chance of making it through his
chemotherapy treatments, then a 50 per cent chance after that, once he undergoes full body radiation
and a bone marrow transplant.
… quality > quantity
“I watched a friend be tortured by the cancer
treatment. It was the treatment, not the
cancer, that was the torture. If the issue
comes up for me, I'll refuse treatment. There
are worse things than death.”
… quantity > quality
“I lost a cousin at age 28 to leukemia but I
also have a friend who survived a year of
intensive treatments. Yes, it almost killed him
but he is doing OK now and has travelled the
world since. He will never be 100% but he is
very happy to be alive and able to carry on.”
As people today survive what used to be
primarily fatal diseases, and learn to live with
complex chronic conditions, the impact of
treatment and disease on QOL has become
increasingly important to clinicians,
researchers and patients
Background

Measurement of QOL emerged in the 1970s when the focus of health care
evaluation moved from traditional clinical outcomes (i.e. mortality,
morbidity) to the measurement of broader outcomes, such as function (i.e.
ability to perform daily activities of life).

Traditional clinical outcomes were seen to not capture the whole range of
ways in which a patient is affected by disease and/or treatment

The inclusion of more holistic outcomes, such as quality-of-life (QOL)
began to gain increasing interest

QOL is conceptualized as a broad assessment of well-being across
various domains

HRQOL is considered to be a subdomain of QOL
Adult QOL publications
Moons et al 2006
Pediatric QOL publications
Klassen et al 2007
Definitional and conceptual issues

Despite increasing interest in QOL, there is no consensus on the
definition and/or conceptualization of QOL

A wide spectrum of QOL definitions and conceptualizations exist in the
literature

People use the term QOL to mean many different things – this can
make comparison of findings difficult or impossible

QOL is often used as a generic label for an assortment of physical
functioning and psychosocial variables

There is often no distinction made between measures of QOL and
measures of HRQOL
WHO definition of QOL (1994)
“an individual’s perception of his/her position in life in the context of
the culture and value systems in which he/she lives, and in relation
to his/her goals, expectations, standards and concerns. It is a
broad-ranging concept, incorporating in a complex way the
person’s physical health, psychological state, level of
independence, social relationships, and their relationship to salient
features of their environment.”
QOL: The degree to which a person enjoys the
important possibilities of his or her life -- Ctr for Health
Promotion, U of Toronto
Being: who one is

Physical Being: physical health; personal hygiene; nutrition; exercise; grooming/clothing; physical appearance

Psychological Being: psychological health & adjustment; cognitions; feelings; self-esteem/self-concept/self-control

Spiritual Being: personal values ; personal standards of conduct; spiritual beliefs
Belonging: connections with one's environments

Physical Belonging: home; workplace/school; neighbourhood; community

Social Belonging: intimate others’; family; friends ; co-workers; neighbourhood and community

Community Belonging: adequate income; health & social services; employment; educational programs; etc
Becoming: achieving personal goals, hopes, and aspirations

Practical Becoming: domestic activities; paid work; school or volunteer activities; seeing to health or social needs.

Leisure Becoming: activities that promote relaxation and stress reduction

Growth Becoming: activities that promote the maintenance or improvement of knowledge/skills; adapting to change
What about pediatric QOL?
Many pediatric QOL measures have now
been developed and several reviews have
been published.
Review of Child QOL measures

Reviewed QOL measures for children aged 0 to 12 yr

Looked at conceptual frameworks & definitions

14 generic and 25 condition-specific identified

Reliability and validity tested for most

Only 3 based on a conceptual model/theory
Health-related QOL

Health is consistently included as an important
aspect of QOL

HRQOL is seen as a subset of the overall concept of
QOL and includes those parts of QOL that can
directly relate to an individual’s health.

HRQOL, Health Status, Functional Status are terms
that are often used interchangeably but they measure
different things
Functional Status
Health Status (HS)
HRQOL
An individual’s ability
to perform normal
daily activities that
are essential in
order to meet basic
needs, fulfill usual
roles, and maintain
health and wellbeing (Wilson &
“Within the skin”
dimensions of
health, e.g., Health
Utilities Index –
vision, hearing,
speech, ambulation,
dexterity, emotion,
cognition,
pain/discomfort
Clearly 1995)
(Feeny et al 1995)
Can be similar to
health status, but
differs in that it
includes a
subjective
assessment of the
impact of disease
and treatment
across domains of
QOL
HRQOL
Based on the view that health is
multidimensional and that it is subjective and
therefore should be evaluated by asking a
person directly
HRQOL / Health Status

HRQOL and HS were distinct constructs in a metaanalysis of 12 chronic disease studies (Smith 1999)
– When rating HRQOL patients gave greater
emphasis to mental health
– When rating HS patients gave greater emphasis to
physical health

QOL was only modestly correlated with HS in study of
203 adolescents with CP (Rosenbaum 2008)
Does a healthy life = a high QOL?

People with significant HS and functional
status problems do not necessarily have low
QOL score

“Disability paradox” -- physically disabled
persons unexpectedly experience a good
QOL even though most external observers
may assume that these people live an
undesirable life (Albrecht & Devlieger, 1999)
What measures are available to
measure HRQOL in children?
Review findings

30 generic & 64 disease/condition-specific identified

Number & name of HRQOL domains varies substantially

Lower age limit for child-report measures = 5-6 yrs

Many instruments meet accepted psychometric standards
Generic vs. disease-specific

Generic questionnaires allow direct comparisons
across disease groups or between sick and healthy
groups

Disease or condition-specific instruments address
problems specific to only one illness or disease.
–
Such instruments, when developed through in-depth
qualitative interviews, can help to identify QOL issues of
importance to them.
QOL instruments
Generic
Disease-specific
30
64 ( 27 different conditions)
Asthma (10), cancer (8), epilepsy
(7)
Published > 2001
Respondents
9
42
13 child
4 proxy
13 both
28 child
17 proxy
19 both
1 nurse

16 generic HRQOL measures identified
Research example
HRQOL of Children with ADHD
Background

ADHD is a common psychiatric disorder, affecting
approximately 3-5% of children

The aim of treatment is to decrease symptoms,
enhance functionality and improve well-being for the
child and his/her close contacts

Measurement of treatment response is often limited
to measuring symptoms using behavior rating scales
Methods

Subjects: all referrals to the ADHD clinic at BC
Children’s Hospital, Vancouver between Nov ’01 and
Oct ’02

Data collection: CHQ included in package of
symptom rating scales sent prior to outpatient
appointment

Clinical data: psychiatric diagnoses extracted from
the hospital charts
Measures

Child (CSI), Adolescent (ASI) & Youth (YSI) Symptom Inventory
– Measure of symptoms for a wide range of DSM-IV diagnoses
including ADHD subtypes

Conners Rating Scale Hyperactivity Index
– Measure of overall psychopathology for children presenting with
ADHD

Child Health Questionnaire (50-item parent form)
– Multidimensional HRQOL measure for children 5-18
Interpretation of low and high scores for each CHQPF-50 concept
Domain/Scale
Physical
function
Role/physical
Bodily pain
General
behavior
Mental health
Self esteem
General health
Family
activities
Family
cohesion
Low Score
Child is limited a lot in performing all physical
activities, including self-care, due to health.
Child is limited a lot in school work or activities
with friends as a result of physical health.
Child has extremely severe, frequently and limiting
bodily pain.
Child very often exhibits aggressive, immature,
delinquent behavior.
Child has feelings of anxiety and depression all of
the time.
Child is very dissatisfied with abilities, looks,
family/peer relationships and life overall.
Parent believes child’s health is poor and likely to
get worse.
The child’s health very often limits and interrupts
family activities or is a source of family tension.
Family’s ability to get along is rated “poor”.
High Score
Child performs all types of physical activities including
the most vigorous without limitations due to health.
Child has no limitations in school work or activities
with friends as a result of physical health.
Child has no pain or limitations due to pain.
Child never exhibits aggressive, immature, delinquent
behavior.
Child feels peaceful, happy and calm all of the time.
Child is very satisfied with abilities, looks, family/peer
relationships and life overall.
Parent believes child’s health is excellent and will
continue to be so.
The child’s health never limits or interrupts family
activities nor is a source of family tension.
Family’s ability to get along is rated “excellent”.
Response Rate
335 mailed
79 children ineligible
165 returned
64.5% response rate
Child characteristics
Male, n (%)
Child age, mean (s.d.)
106 (80.9)
10 (2.8)
Comorbidity
0
47 (35.9)
1
56 (42.7)
>2
28 (21.4)
Comorbidity Type
Learning disorder
50 (38.2)
Disruptive Behavior Disorder
45 (34.4)
Other disorder
26 (19.9)
Mean CHQ-PF50 item and domain scores comparing
Australian and USA population norms with ADHD children
100
90
80
70
60
Australia
50
USA
40
ADHD
30
20
10
FC
FA
PT
PE
SE
H
M
BE
G
H
RE
B
BP
RP
PF
0
Effect sizes comparing ADHD sample with USA population norms
Domain
Effect Size
Family-Cohesion
-0.66
Self-esteem
-0.90
Mental Health
-0.97
Parental Impact-Time
-1.07
Role/Social Limitations Emotional-Behavioural
-1.60
General Behaviour
-1.73
Parental Impact-Emotional
-1.87
Family Activities
-1.95
Psychosocial Summary Score
-1.98
Comparisons with other ADHD
samples and population norms
Figure 1 Mean CHQ-PF50 scores for different clinical samples compared with USA and Australian normative data
100
80
Australia
USA
60
Klassen
Perwien
40
Landgraf
Sawyer
20
0
PF
RP
BP
GH REB BE
MH SE
PE
PT
FA
PF = Physical Function; RP = Role Physical; BP = Bodily Pain; GH = General Health; REB = Role Emotional-Behavioral; BE =
Behavior; MH = Mental Health; SE = Self-esteem; PE = Parental Impact-Emotional; PT = Parental Impact-Time; FA = Family
Activities
Proxy-reported HRQOL

Patient self-report is considered the gold standard in HRQOL
assessment

Riley (2004) reviewed research from a range of areas:
–
–
–
–

studies of cognitive abilities
cognitive interviewing studies of children’s ability to respond to
questionnaires and influences on their responses
psychometric studies of child-report questionnaires
longitudinal research on the value of child report
Children as young as 6 years are able to understand questions
about their QOL and to give valid and reliable answers
Complementary perspectives

Self-report is not always feasible or possible for children
–
may be too ill, unwilling, lacking the necessary language skills,
attention, or cognitive abilities

Proxy may need to report HRQOL scores for child

Even when children are able to participate, proxy ratings may
provide a different perspective that is complementary

What is important is what each reporter contributes to the overall
understanding of child HRQOL rather than who is more accurate
Eiser & Morse review of 14 studies
– Agreement was generally good for more
observable domains of HRQOL (e.g.,
physical function, behavior)
–
Agreement generally poor for less
observable domains of HRQOL (e.g.,
social function, emotional function)
Research example
Agreement between parent- and self-report
of HRQOL in children with ADHD

58 children diagnosed with ADHD and their
parents participated

CHQ permitted comparisons on 8 HRQOL
domains and one single item
Sample characteristics
Child age
n (%)
10-11 years
20 (34.5)
12-13 years
20 (34.5)
14-15 years
14 (24.1)
16-17 years
4 (6.8)
Child gender (male)
48 (82.8)
Type of comorbidity
Learning disorder
25 (43.1)
ODD/CD disorder
16 (27.6)
Other disorder
12 (20.7)
Parent gender (female)
49 (86)
Biological parent
48 (92.3)
Married or common-law
39 (68.4)
Household income
< $40,000
23 (42.6)
$40,000 to $80,000
19 (35.2)
> $80,000
12 (22.2)
Agreement between parent and child
Mean CHQ domain scores comparing children with
ADHD and their parents with Australian child and
adult population norms
100
80
Austrialian parent
60
Australian child
ADHD parent
40
ADHD child
20
0
PF
RP
BP
GH
BE
MH
SE
FA
FC
Mean scores, p-value and effect sizes comparing
self- and parent-report of CHQ domain scores
Concluding comments

It is crucial to inspect the HRQOL items and domains of
any candidate generic or condition-specific measure to
ensure that the content of the instrument is appropriate
for the research about to be undertaken.

If a new HRQOL measure is required, how you develop
a HRQOL measure is important and guidelines exist for
the 3 key stages:
– Item generation
– Item reduction
– psychometric evaluation
Caregivers’ Perspective of Health
Outcomes of NICU Graduates
Veronica Schiariti
MD, MHSc, PhD (Candidate)
Research Associate CYDiS, CCHR
BC Children’s Hospital, UBC
May 2008
OUTLINE

Review health related quality of life (HRQOL)
outcomes of particular subpopulations of neonatal
intensive care unit (NICU) graduates
–
Caregiver-reported health outcomes of preschool children
born at 28-32 weeks’ gestation
–
Perinatal characteristics and parents’ perspective of health
status in NICU graduates born at term (≥ 38 weeks)
Rationale

Neonatal follow-up studies have helped to identify a
range of negative health outcomes associated with
NICU admissions.

Most research to date has focused on preterm
infants, particularly the extremely low birth weight (≤
28 weeks gestational age (GA).

Although many studies report on 1 outcome (i.e. rate
of CP, intellectual disability, etc), a comprehensive
assessment of the overall burden of morbidity is
often lacking.
Rationale for 28-32 week study
population

In most tertiary centers, extremely premature infants
(≤ 28 weeks GA) and those who experienced major
morbidities during NICU admission are enrolled in
FU programs.

Most research has focused on the ≤ 28 weeks
population, who represent a small proportion of
NICU survivors.

Little is currently known about the HRQOL outcomes
of the increasing numbers of more mature premature
infants.
Rationale for ≥ 38 week study
population

Few studies have examined long-term outcomes of
term infants who required NICU. The majority were
carried out more than 10 years ago.

Most studies of full term NICU graduates have
focused on the outcome of specific disease entities
(i.e asphyxia, sepsis, etc).

Term infants represent a significant proportion of
NICU admissions but generally they are not seen in
neonatal FU programs.
Objectives

To measure the HRQOL of preschoolers who
were admitted to a BC NICU at birth following a
GA of 28-32 weeks and ≥38 weeks.

For the ≥38 week, to investigate the differences
in HRQOL in relation to main reason for
admission to NICU.
Methods: Data collection
A questionnaire booklet was sent to each mother as her
child turned 3.5 years of age including the following
HRQOL measures:
Health Status Classification System Preschool Version (HSCS-PS)
 14-item HS instrument assesses the following 12 health attributes,
each with 3 to 5 levels of severity:
–
Seeing, hearing, speaking, getting around, using hands and
fingers, taking care of self, feelings, learning and remembering,
thinking and solving problems, pain and discomfort, general
health, behaviour
Methods: Data collection
–
Infant and Toddler Quality of Life
Questionnaire (ITQOL)

8 child concepts
–
–
–
–
–
–
–
–
physical abilities (10 items),
growth and development (10),
pain and discomfort (3),
Temperament and moods (18),
general behaviour (13), getting along with others (15),
general health perception (12),
and change in health (1)
and 5 parental concepts
Methods: study sample



2221 surviving infants admitted >24 hrs to one of
three tertiary NICUs in BC (March 1996 to June
1997).
718 Full term controls, from the 2 hospitals with a
hospital-based primary care unit.
Excluded:
–
–
–
–
Healthy infants subsequently admitted >24 hs to NICU
language barriers
child/mother died
completion of the questionnaire on the wrong child
Methods: NICU sample
2221 NICU admissions
555
≤ 33 wks
251
50
≤ 27 wks
945
33-37 wks
341
201
28-32 wks
721
≥ 38 wks
261
Exclusions
-Parent did not speak English
-Baby/mother died
-Family moved/could not be traced
Questionnaire completion
and consent to link data to CNN
Methods: healthy full term sample
718 healthy full term infants
Exclusions
-Parent did not speak English
-Baby/mother died
-Family moved/could not be traced
- Not applicable
Questionnaire completion
393
NICU Nonrespondents
•
28-32 wks GA:
•
older
•
less likely to have major morbidity
•
had less intensive interventions
•
lower SNAP-II scores less likely to be outborn
≥ 38 wks GA:
•
lower Birthweight
•
had lower Apgar at 5 min
•
had shorter NICU stay
Methods: analysis

HSCS-PS domains were grouped in 4 categories:
–
–
–
–


neurosensory (seeing & hearing)
motor (motor & self-care)
learning/remembering (speaking & learning)
QoL (feelings, pain, health & behavior)
The Chi-square was used to compare outcomes by
type of HSCS-PS problem and severity of problem.
Effect sizes were calculated to estimate the
importance of the differences in HRQOL between
groups (ie, .20 is small, .50 is moderate, and .80 is
large).
28-32 wks study
Results: 28-32 week GA
% Reported problems by GA for each HSCS-PS domains
<28 weeks
28-32 weeks
healthy controls
60
50
40
30
20
10
0
ry
o
ns
e
s
ro
u
Ne
M
or
t
o
b
em
m
re
/
n
ar
e
L
L
Qo
Results: 28-32 week GA
Conclusion

Infants born at 28-32 wks GA at preschool age may
have significant difficulties in:
–
–
–
–
–


neurosensory,
motor,
learning/remembering,
quality of life
general health
This population is at higher risk for long-term health
and developmental problems than has been
previously recognized.
Routine and long term neurodevelopmental follow-up
should be considered for this population.
≥ 38 wks study
Results: ≥ 38 week GA
35
30
25
20
15
NICU
10
5
0
sp
Re
y
or
t
ira
S
CN
al
in
t
s
lar
u
c
le
ke
l
ta
s
te
nd
va
in
os
o
l
o
o
c
i
u
r
d
r
st
sc
ar
a
he
u
t
C
G
M
O
on
iti
s
Results: ≥ 38 week GA
% Caregiver reported moderate/severe problems for each HSCS-PS domain
Term NICU graduates
Healthy infants
14
12
10
8
6
4
2
0
y
or
s
n
se
o
ur
Ne
M
or
ot
b
em
m
re
/
n
ar
e
L
p-value< 0.001 overall comparison, Chi-square test
L
Qo
Results: ≥ 38 week GA
Conclusion
•
Term infants represent a significant proportion of
level three NICU admissions in BC.
•
Term babies admitted to an NICU may have
significant health differences in health status in early
childhood.
•
Further study is needed to address whether NICU
term survivors warrant secondary and/or tertiary
level neonatal follow-up.
Relevance

These studies examine current HRQOL of
infrequently studied NICU graduates
population.

Our results are relevant to healthcare
providers, health and education policy
makers, and families.
Limitations

Potential non-response bias in postal survey

Exclusion of certain ethnic groups due to
language barriers.

Non-random selection of healthy comparison
group.
Acknowledgements

Co-investigators: Anne Klassen, Jill Houbé, Anne Synnes, Sarka
Lisonkova, Shoo Lee, Canadian Neonatal Network
• The Hospital for Sick Children Foundation (Toronto)
provided an operating grant for this study.
• Veronica Schiariti was the recipient of a trainee award from
the Neonatal-Perinatal Interdisciplinary Capacity Enhancement (NICE)
Team, funded by Canadian Institutes of Health Research (CIHR).
• From British Columbia Research Institute, Veronica Schiariti holds a
Graduate Studentship.
References







Klassen AF, Lee SK, Raina P, Chan HW, Matthew D, Brabyn D. Health status and healthrelated quality of life in a population-based sample of neonatal intensive care unit
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Klassen AF, Landgraf JM, Lee SK, et al. Health related quality of life in 3 and 4 year old
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Achenbach TM, Rescorla LA. Manual for the ASEBA Preschool Forms and Profiles.
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Quality of Life of Former Preterm and
Very Low Birth Weight Infants from
Preschool-Age to Adulthood:
A Systematic Review
Jill Zwicker, PhD Candidate
Rehabilitation Sciences
Susan Harris, PhD
Department of Physical Therapy
University of British Columbia
Vancouver, BC Canada
Background and Rationale




Survival of very low birth weight (VLBW:<1500g) and
extremely low birth weight (ELBW:<1000g) infants
has increased
Although mortality has decreased, morbidity
continues to be high
Long term studies indicate that these children have
issues with health, growth, learning, and behaviour
Several authors have examined QOL of preterm
(< 37 weeks gestation), VLBW and ELBW infants at
older ages
Purpose of Systematic Review
The purpose of the systematic review was to answer
the following question:
In preschool children, school-age children,
adolescents and young adults, does preterm
birth and/or very low birth weight have an effect
on their HRQOL?
Photo from: http://medicineworld.org/images/blogs/5-2007/premature-baby.jpg
Search Strategy

We searched the following databases up to
September 2006: MEDLINE and PubMed, EMBASE,
EBM Reviews, CINAHL, PsycINFO, and ERIC

We also attempted to locate additional, unpublished,
and grey literature by searching SIGLE (System for
Information on Grey Literature), ProQuest,
PapersFirst, ProceedingsFirst, and other databases
Search Terms

a liberal search strategy was used initially to include
terms related to quality of life, such as health status,
well being, activity and/or participation limitation,
functional status, or motor skill impairment

samples which included preterm, VLBW, or ELBW
cohorts were considered for review

studies that focused primarily on low birth weight or
small for gestational age infants were excluded
Study Selection





Comprehensive search resulted in 1845 articles
Titles were independently reviewed by two
reviewers, JZ and SH
Titles were included if either reviewer selected them,
resulting in 206 abstracts for further review
Abstracts were independently reviewed using
checklist of inclusion and exclusion criteria
We initially obtained 84.5% agreement of which
abstracts to include, followed by consensus after
discussion
Study Selection con’t

49 full-text articles were obtained for review

Our initial inter-rater reliability of articles to proceed
to quality assessment was 67.3%, with consensus
reached after discussion

Articles were excluded:

no QOL measure
no separate analysis for preterm, VLBW, or ELBW
review article, commentary, or editorial

foreign language*


Assessment of Study Quality

19 observational studies remained and were
assessed independently by JZ and SH using an
adapted checklist from the CRD

Papers received a score out of 10 based on factors
such as # of drop-outs, % of cohort followed, control
of confounding variables, blinded assessment, etc.

4 studies were excluded at this stage due to lack of
comparison group of normal birth weight or full-term
children, leaving 15 studies included in systematic
review
HRQOL Outcome Measures
Preschool
ITQOL (1)
PedsQL (1)
TAPQOL (3)
Scheffzek’s
Categories (1)
School
HUI2 (1)
Adolescent
Adult
HUI2 (2)
HUI2 (1)
CHQ (2)
Informal QOL
questionnaire (2)
SF-36 (1)
Summary of Findings
Preschool-Age (6 studies)

4 studies found significant differences between study and
control groups in physical functioning, esp. in motor function
(Chien et al.,2006; Fekkes et al., 2000; Klassen et al., 2003, 2004;Theunissen
et al., 2001)

Social functioning was also significantly lower for preterm and
VLBW groups (Chien et al.; Eiser et al.; Fekkes et al.; Klassen et al.)

Some studies found no significant difference in emotional
functioning (Eiser et al.; Klassen et al.) where as other reported that
preterm/VLBW group were significantly more anxious (Chien et
al.; Fekkes et al.; Theunissen et al.) than controls
Summary of Findings
School-Age (1 study)

HRQOL was significantly lower for the ELBW
children compared to the general population based
on mean utility scores on Health Utilities Index (Saigal
et al., 1994a,1994b)
Summary of Findings
Adolescents (4 studies)

ELBW teens reported significantly lower utility scores than their
peers, but not necessarily lower HRQOL (Saigal et al., 1996)

VLBW teens did not rate themselves as significantly different
than their peers, but parents reported significant differences in
health and behaviour of their children and their own
psychosocial health (Indredavik, 2005)

Parents of ELBW and ELGA teens reported that their children’s
QOL was significantly different than their peers both on utility
measures (Saigal et al.,2000) and generic health measures (Johnson
et al.,2003)
Summary of Findings
Young Adults (4 studies)

no significant differences in QOL (Bjerager et al., 1995) or
subjective QOL (Dinesen et al., 2001) reported by adults born at
VLBW

significantly lower scores for VLBW adults in objective QOL,
which is based on societal standards as opposed to individuals’
experiences and preferences (Dinesen et al., 2001)

significantly poorer performance in physical functioning of
VLBW adults compared to NBW adults, but no other significant
differences on the SF-36 (Cooke, 2004)

similar utility scores for ELBW and NBW young adults (Saigal et
al., 2006)
Discussion
In preschool children, does preterm birth
and/or VLBW have an effect on HRQOL?

Differences between the study and control groups were
reported in all six studies, suggesting that many preschool
children born preterm or at VLBW performed significantly more
poorly than their peers in physical, emotional, and/or social
functioning (2 studies of high quality, 4 moderate)

All studies involved parent-proxy report (influenced by feelings
toward and expectations of child as well as cultural, social, and
educational background)
Discussion
In school children, does preterm birth
and/or VLBW have an effect on HRQOL?

Only one study, but it was a methodologically rigorous and welldesigned retrospective cohort study with a quality rating of 10.

Insufficient information to answer this question from this study,
but children born preterm or at VLBW experience academic,
motor, psychosocial, and behavioral difficulties at school age
(Bhutta et al., 2002; Foulder-Hughes et al.,2003; Grunau et al., 2004; Holsti et
al., 2002; Taylor et al., 2000; Whitfield et al.,1997)

Preterm children are 2.6 times more likely than their full-term
peers to develop ADHD (Bhutta et al.), a disorder that has been
shown to affect QOL of children and youth (Klassen et al., 2004)
Discussion
In adolescents, does preterm birth
and/or VLBW have an effect on HRQOL?

Evidence from the 4 (high quality) studies suggests
parents of VLBW, ELBW, or ELGA teens perceive
that their children had a lower HRQOL than their
peers, but the teens themselves did not

These studies highlight the issue of self versus
parent proxy report
Discussion
In young adults, does preterm birth
and/or VLBW have an effect on HRQOL?

Overall, there was not a significant difference
between preterm and full-term young adults,
although measures of objective QOL and physical
functioning were significantly lower for the preterm
groups (3 high quality, 1 weak)
Discussion

Notwithstanding the limited information at schoolage, it appears that the impact of preterm birth
and/or VLBW on HRQOL diminishes over time

What is not known is whether this is a true change in
HRQOL or a function of:
– parent versus child report
– different definitions and measures of HRQOL
– adaptation and changing of expectations as
individuals grow and develop
Limitations

Heterogeneity of populations included in the review

Comparing QOL across age groups is confounded
by changes in neonatal interventions over time,
which may influence outcomes in different cohorts

By only including studies that used a QOL measure,
we consequently excluded a large body of preterm
literature reporting on QOL-related concepts
Conclusion

Results of this systematic review indicate that
preterm birth and/or VLBW does have an effect on
HRQOL at various age groups

Impact of low birth weight and gestational age is
greatest during the younger years, but the influence
also extends into adolescence and adulthood
Directions for Future Research

a consistent definition and measurement of HRQOL
would help to consolidate findings of future follow-up
studies of preterm and/or VLBW children,
adolescents and adults

more studies on the HRQOL of preterm and/or
VLBW children at school-age

qualitative studies exploring HRQOL from the
perspectives of preterm and/or VLBW children and
adults
Acknowledgments

Charlotte Beck, Health Science Reference Librarian,
for her assistance in conducting the literature
searches

CIHR Quality of Life Strategic Training Fellowship in
Rehabilitation Research for providing me with
funding and training