Blackwell Science, LtdOxford, UKCCHDChild: Care, Health and Development0305-1862Blackwell Publishing Ltd, 20042004312127135Original ArticleDevelopment of a condition-specific measure of quality of life for children with cerebral palsyE. Waters
et al.
Original Article
Development of a condition-specific
measure of quality of life for children with
cerebral palsy: empirical thematic data
reported by parents and children
E. Waters,*†‡ E. Maher,*†‡ L. Salmon,*†‡ D. Reddihough†‡§ and R. Boyd†‡¶
*School of Health and Social Development, Faculty of Health and Behavioural Sciences, Deakin University,
Melbourne
†Department of Paediatrics, University of Melbourne,
‡Murdoch Children’s Research Institute, Melbourne,
§Department of Child Development & Rehabilitation, Royal Children’s Hospital, and
¶Department of Neonatal Neurology, Royal Children’s Hospital, Victoria, Australia
Accepted for publication 24 June 2004
Abstract
Keywords
quality of life, cerebral palsy,
health-related,
measurement, families
Correspondence:
Professor Elizabeth Waters,
MPH, DPhil (Oxon), Chair in
Public Health, School of
Health and Social
Development, Faculty of
Health and Bahavioural
Sciences, Deakin University,
Melbourne, 221 Burwood
Hwy, Burwood, 3125,
Victoria, Australia
E-mail:
elizabeth.waters@deakin.
edu.au
Background Although there is increasing recognition that quality of life (QOL) and health-related
quality of life (HRQOL) are important outcome variables in clinical trials for children with cerebral
palsy, there are substantial limitations in existing measures of QOL. This study identify themes of QOL
for children with cerebral palsy and their parents to guide the development of a new conditionspecific QOL scale.
Methods A qualitative study of parent and child views on QOL composition was conducted, using
a grounded theory framework. Families participated in semistructured interviews on QOL until
thematic saturation was reached (n = 28 families).
Results Overall, 13 themes emerged from the interviews: physical health, body pain and discomfort,
daily living tasks, participation in regular physical and social activities, emotional well-being and selfesteem, interaction with the community, communication, family health, supportive physical
environment, future QOL, provision of, and access to services, financial stability, and social well-being.
Conclusions Research with parents and children with cerebral palsy, representative of severity across
the disease spectrum and socio-economic status, reinforced and expanded on the traditional themes
that have underpinned QOL measurement development. This has implications not only for the
development of a new QOL scale for children with cerebral palsy, but also for clinical interventions
and community care management.
Cerebral palsy is the most common physical disability in childhood, occurring in 2–2.5 per thousand live births (Stanley et al. 2000). Cerebral palsy
is a ‘disorder of movement and posture due to a
defect or lesion of the immature brain’ (Bax 1964).
Treatment of the motor disorder alone may involve
a range of therapies and interventions such as
physiotherapy, the use of orthoses, orthopaedic
surgery and medications for spasticity such as
Botulinum toxin A (BTX-A), and oral and intrathecal baclofen (Boyd & Hays 2001). Over the past
10 years, there have been increasing efforts to
obtain empirical-based evidence to guide practice
in the field. Outcome measures that have been used
Original Article
© 2005 Blackwell Publishing Ltd
127
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E. Waters et al.
include spasticity rating scales, tests of gross and
fine motor skills to assess changes in function, and
gait analysis to demonstrate alterations in walking
patterns. More recently quality of life (QOL) and
health-related quality of life (HRQOL) have
become core outcome variables in clinical trials
(Bjornson & McLaughlin 2001). However, limitations in existing measures of QOL for children with
cerebral palsy have spurred the development of a
new condition-specific QOL scale for children with
cerebral palsy (Liptak et al. 2001).
The area of QOL measurement for children
remains underdeveloped and marred by a lack of
consensus in the definition of QOL and HRQOL.
There is consensus that the language and content
of children’s QOL measures need to be appropriate
to children’s experience and development, and
therefore researchers have been reluctant to simply
apply the principles and definitions of adult QOL
to child QOL (Gerharz et al. 2003).
The major problem with many definitions of
QOL and HRQOL is that they are often complex
and difficult to operationalize (Eiser & Morse
2001). For example, QOL has been defined by the
World Health Organization (WHO) as ‘the individual’s perception of their position in life, in the
context of culture and value systems in which they
live and in relation to their goals, expectations,
standards and concerns’ (World Health Organization 1993). Definitions of HRQOL are similarly
unclear, such as ‘a rubric, encompassing various
aspects of personal experience, including physical
and psychological health, cognitive factors, social
role performance, and general life satisfaction’
(Warchausky et al. 2002).
A clearer conceptualization of QOL and
HRQOL, developed by Spilker and Revicki (1996),
is that HRQOL is a subset of QOL. HRQOL refers
to an individual’s perception of his or her health
(Irrgang & Anderson 2002), which as defined by
the WHO, consists of physical well-being, mental
well-being, and social well-being (World Health
Organization 1948). QOL refers to satisfaction
with a variety of domains, including health
domains and non-health domains. Whilst there is
little agreement on these non-health domains for
children, if HRQOL is considered a subset of QOL,
relevant non-health domains for children may
include home environment and parental support
(Juniper et al. 1996).
Two types of scales to measure QOL are commonly recommended and available; generic and
condition-specific. Generic scales are designed to
be applicable to all population subgroups and are
useful for comparing outcomes of subgroups
(Bjornson & McLaughlin 2001). Conditionspecific scales are designed to be applicable to one
group, and are useful to detect small changes in a
condition (Bjornson & McLaughlin 2001).
Both generic and condition-specific scales have
been used in the past to measure the QOL/HRQOL
of children with cerebral palsy. A commonly
employed generic scale is the Child Health Questionnaire (CHQ; Landgraf et al. 1996). Conditionspecific scales include the Lifestyle Assessment
Questionnaire (LAQ; Mackie et al. 2002), the modified Caregiver Questionnaire (CQ; Schneider et al.
2001) and the Pediatric Outcomes Data Collection
Instrument (PODCI; Daltroy et al. 1998). Each of
these measures, although appearing to be adequate
outcome measures for children with cerebral palsy,
has substantial limitations if they are used as outcome measures of QOL or HRQOL for children
with cerebral palsy in clinical trials.
Generic scale: the CHQ
Many researchers have relied on the CHQ to measure QOL/HRQOL of children with cerebral palsy
(Houlihan et al. 2001; Schneider et al. 2001; Vitale
et al. 2001; McCarthy et al. 2002; Warchausky et al.
2002; Wake et al. 2003). The CHQ is a generic child
health instrument that measures physical functioning, behaviour, mental health, general health, social
and family functioning, family cohesion, selfesteem, pain and the impact of health issues on
parental time and emotions (Landgraf et al. 1996).
Generic measures such as the CHQ have been
shown to be inordinately useful in establishing a
profile of child health across multiple health
domains that align with the WHO definition of
health (Waters et al. 2000a; Waters et al. 2000b;
Wake et al. 2003). Although it has been argued that
some of the questions (i.e. playing soccer or bike
riding) may be irrelevant for children with severe
cerebral palsy (Schneider et al. 2001), the CHQ has
© 2005 Blackwell Publishing Ltd, Child: Care, Health & Development, 31, 2, 127–135
Development of a condition-specific measure of quality of life for children with cerebral palsy
been shown to have adequate psychometric properties for Australian children with cerebral palsy
(Wake et al. 2003). However, it must be recognized
that the CHQ has not yet been extensively tested in
intervention trials, and therefore it remains uncertain whether it is responsive to change over time or
following interventions (Boyd et al. 2003; Wake
et al. 2003).
Condition-specific scales: the CQ
The CQ was developed in 1990 at the Rehabilitation Institute of Chicago, USA for a defined population of children with spastic quadriplegic cerebral
palsy who were to undergo selective dorsal rhizotomy. The CQ assesses the caregiver’s difficulties
and satisfaction with their child’s progress in four
areas: personal care, positioning/transferring,
comfort and interaction (Schneider et al. 2001).
The major problem with the CQ, one that is also
evident with the CHQ and PODCI, is that many of
the items in the scale measure the absence of health
difficulties or limitations rather than well-being.
For example, the CQ assesses difficulties with daily
personal care, and difficulties with participating in
sports. If it is assumed that QOL is measured by a
presence of well-being as opposed to an absence of
ill being then measures need to clearly work within
this model. Whilst this underlying assumption has
not been well discussed in the child health or paediatric literature, researchers of the adult literature,
propose that ill being is not low well-being, and the
absence of ill being is not high well-being (Argle
1996).
Condition-specific scale: the LAQ
The LAQ is a condition-specific scale that measures
physical independence, clinical burden, mobility,
schooling, economic burden and social integration
(Mackie et al. 1998, 2002). Little research has been
conducted on this measure, however, analyses of a
small sample of children with cerebral palsy suggest
that the scale is reliable (over a 4-year gap), and
valid (when a measure of disability is used as a
benchmark; Mackie et al. 1998).
An important philosophical concern for the
LAQ, but also the CQ and PODCI, is the lack of a
129
child self-report version. QOL is inherently the
subjective experience of the individual (Eiser &
Morse 2001), and thus it is important to elicit children’s views of their QOL if they have the ability
and desire (Eiser et al. 2000; Ronen et al. 2003). A
parent proxy scale of QOL is necessary as a result
of children’s level of vocabulary and language
(Stewart 2000), however, it must be recognized that
proxy ratings are not a substitute for individual
ratings (Eiser et al. 2000).
Condition-specific scale: the PODCI
The PODCI measures comorbidity index, upper
extremity and physical function, transfers and
basic mobility, sports and physical function, pain/
comfort, expectations and happiness (Daltroy et al.
1998). The PODCI has been shown to be reliable,
valid (using the CHQ physical functioning scale as
a benchmark) and sensitive to change for a large
sample of children with musculoskeletal disorders
(Daltroy et al. 1998). One concern with the PODCI
is that it focuses on physical health and functioning
and excludes other potentially important domains
such as social well-being. The PODCI’s focus on
physical health and functioning is warranted given
that the PODCI does not claim to measure QOL
or HRQOL; it is simply that other researchers have
used it for that purpose. The PODCI claims to
measure functional status, and assesses what children can do, rather than their level of well-being.
Other scales that have been misused include the
CHQ, which measures health status, and the LAQ,
which measures the impact of disability. The fact
that researchers are using these scales to measure
QOL/HRQOL clearly suggests that: (1) there is a
lack of understanding of QOL; and (2) there is a
lack of scales to measure QOL in children with
cerebral palsy. This had led researchers to conclude
that there is an internationally recognized need for
a sensitive and discriminate measure that can be
used to evaluate the effectiveness of interventions
(Bjornson & McLaughlin 2001).
In designing a scale of QOL, one of the questions
that requires consideration is which domains constitute QOL for children with cerebral palsy and
their families. Although past scales (CHQ, PODCI)
have measured domains that were decided a priori
© 2005 Blackwell Publishing Ltd, Child: Care, Health & Development, 31, 2, 127–135
130
E. Waters et al.
by researchers and clinicians, there is increasing
recognition that families and children need to be
consulted in this process (Bjornson & McLaughlin
2001). Qualitative research is the most suitable
design for exploratory research, and thus for the
purpose of researching the underpinning elements
of QOL (Ronen et al. 2001).
This paper presents the results of a qualitative
study conducted to identify the major themes of
QOL for children with cerebral palsy and their
parents. The study employed a grounded theory
approach, which refers to the generation of theory
from data (Glaser & Strauss 1967). This method is
based on the proposal that pre-existing theory
may influence the research process, and impede the
development of new theoretical formulations
(Strauss & Corbin 1990). The themes identified in
this study will then be used to inform the first
international condition-specific measure of QOL
for children with cerebral palsy.
Methods
Participants
A sample of 42 families was purposely selected
from the Victorian Cerebral Palsy Register maintained by the Department of Child Development
and Rehabilitation at the Royal Children’s Hospital
Melbourne (Dite et al. 1995). The sample was
intended to be representative of age, functional
severity, socio-economic status and geographical
location. Functional severity was classified by the
Gross Motor Functional Classification System
(Palisano et al. 1997). Levels I and II were termed
mild impairment with high level mobility, Levels
III and IV were termed moderate impairment limited mobility with some antigravity postural stability and Level V was termed severe impairment
without independent antigravity function. Socioeconomic status was based on parental occupation
collected from the Victorian Cerebral Palsy
Register and other details known to the treating
paediatrician. Geographic location was based on
postcode and classified according to Australia Post
classification of rural and metropolitan regions.
Twenty-eight families participated in the study,
contributing data until saturation was reached.
Three families declined to be involved in the study,
and 11 families either did not respond to the initial
letters sent out or were not contactable by four
subsequent follow-up telephone calls. It is unlikely
that this response rate will affect the validity of the
responses, as there were sufficient participants
within each disease category (e.g. mild and rural,
severe and aged 4–8 years, etc.) and socioeconomic background.
Of the 28 families who participated in the study,
16 were parents of children aged 4–8 years and 12
were parents of children aged 9–12 years. Out of
12 children that could possibly be involved in selfreport, five children with mild impairment were
able to be involved. The remaining were either
unable to communicate because of moderate/
severe impairment (n = 5), or because the times
chosen by the parents prevented child participation
(n = 2). Although only five children were involved
in the interviews, the themes were exhausted for
children with mild impairment.
In total, 10 children were classified as having
mild impairment, nine were classified as having
moderate impairment and nine were classified as
having severe impairment. The majority of children came from two-parent families (n = 24), and
had one or more siblings (n = 26; including twins
n = 6). Sixteen families were classified with a high
socio-economic status background and 12 were
from a low socio-economic status background
(based on Registry data). Half of the families were
located in the metropolitan region, and half were
located in rural Victorian areas.
Materials
Interview questions were derived from a review of
the QOL literature. The questions were designed to
prompt discussion and elicit new information relevant to QOL (refer to Appendix 1).
Procedure
Ethics approval for the study was received from the
Research in Humans Ethics Committee of the
Royal Children’s Hospital. Interviews were conducted at a time convenient to the parent(s), either
in their home, at their workplace or at the Royal
© 2005 Blackwell Publishing Ltd, Child: Care, Health & Development, 31, 2, 127–135
Development of a condition-specific measure of quality of life for children with cerebral palsy
Children’s Hospital. Within the 4–8-year age
group, only the parent(s) were interviewed,
however, within the 9–12 years age group, both
parent(s) and child were interviewed when possible. The inclusion of children in the interview
depended on the parent’s consent and the child’s
ability to communicate and willingness to be
involved. The interviews lasted approximately
30 min. The interviews were transcribed by one
researcher, and themes were extracted by three
researchers. Agreement on key themes was
achieved by discussion.
• Supportive physical environment – refers to a
•
•
•
Results
The interviews with children and parents provided
significant information about the daily lives of
children with cerebral palsy, and their families.
Thirteen themes of QOL were extracted from
discussions with parents and children about their
child’s life. According to families, to have a high
QOL, children need to have the following:
• Physical health – refers to adequate gross motor
•
•
•
•
•
•
•
skills and fine motor skills, the ability to use
aides (if required), and good overall physical
health.
Body pain and discomfort – refers to absence of
stiffness and soreness in joints, and pain associated with therapy.
Daily living tasks – refers to the ability to carry
out normal daily living tasks including dressing,
feeding and toileting and being independent.
Participation in regular physical and social activities – refers to participating in school activities,
sporting activities and community activities.
Emotional well-being and self-esteem – refers to
being happy, being able to achieve goals, and
being satisfied with one’s body and emotions.
Interaction with the community – refers to being
socially accepted, being a valued member of the
community, and being treated ‘normally’.
Communication – refers to having good communication skills with family, peers, and people
in the general community.
Family health – refers to good parental emotional health, good family relations, and few
restrictions on the family to go out socially.
131
•
supportive school environment, family environment, and community environment. These
environments need to have the required equipment and devices.
Future QOL – refers to having the opportunities
to do everything that they desire, being able to
do things as well as their peers, and being able to
make choices in their life.
Provision of and access to services – refers to
having access to therapy, respite, and having the
support required.
Financial stability – refers to the earning capacity
of parents, and the ability to cover the expenses
of equipment and treatment.
Social well-being – refers to the ability to interact
with family members, peers, and people in the
general community.
Discussion
Consultations with children with cerebral palsy
and their parents about their QOL provided some
insight into the daily lives of such families; their
good times, their bad times, their challenges and
their desires. The findings confirmed but also
enhanced the previous evidence-based impression
of the key themes of QOL. All domains of health
identified by the WHO, including physical wellbeing (i.e. physical health), mental well-being (i.e.
emotional well-being and self-esteem) and social
well-being emerged as themes.
These were complemented by themes that
were specific to children, such as family health,
and themes that were specific to cerebral palsy,
including body pain and discomfort, daily living
tasks, communication and future QOL. The
remaining themes differed somewhat to the traditional QOL literature. These themes, including
satisfaction with access to services, supportive
physical environments, financial stability of the
family, and acceptance in the broader community, appear to address the practicalities of
having a child with cerebral palsy. These findings have implications for the development of a
QOL scale for children with cerebral palsy, but
also for clinical interventions and community
management.
© 2005 Blackwell Publishing Ltd, Child: Care, Health & Development, 31, 2, 127–135
132
E. Waters et al.
Implications for a QOL scale for children with
cerebral palsy
The findings suggest that a new QOL scale for children with cerebral palsy should examine the traditional domains of QOL (e.g. physical well-being),
the condition-specific domains of QOL (e.g. body
pain and discomfort) and the more practical
domains of QOL (e.g. financial stability).
One potential criticism of using the results of
this study to guide the development of a QOL scale
is that some of the themes mentioned by parents/
children may be inappropriate for a QOL scale.
This study sought the opinions of children with
cerebral palsy and their parents as there is increasing recognition that their contribution is important. However, it must be recognized that there are
few guidelines to determine how to incorporate the
opinions of parents and children with the opinions
of experts. Indeed, it is questioned whether more
emphasis should be placed on the opinions of the
parent/child or the opinions of the researchers/
clinicians, and exactly how conflict between the
two groups should be resolved.
It is possible that parents may report predictors
of QOL, rather than domains of QOL. Predictors
of QOL are variables that are related to QOL, such
as personality, whereas domains of QOL are
components of QOL, such as social well-being. For
example, in this study parents and children mentioned body pain as being important to their QOL,
yet researchers have suggested that domains of
QOL cannot be negative (Hagerty et al. 2001).
They propose that negative domains, such as pain
can only have a neutral effect on QOL, and never
a positive influence (Hagerty et al. 2001). However,
even if this were clearly accepted, it is problematic
to exclude body pain from the scale, as it is clearly
important to the parents and children.
One way to handle this inconsistency is to
develop items for all of the themes reported by
parents and children, test them in a pilot study and
examine their psychometric properties. If after the
pilot study and further consultation with experts,
some of the themes were deemed to be predictors
of QOL rather than domains, it is recommended
that the themes still be included in the scale but
that the score is not aggregated into the total QOL
score. If this procedure is followed, the resulting
scale would include areas that are important to
parents and children whilst still recognizing the
theoretical developments that have been made in
the QOL literature.
In developing items to measure each theme, the
interview transcripts will be examined further.
Based on these interviews, items will be developed
to measure each theme in alignment with the social
model of health (Learmonth 1985; Najman 2001).
For example, for the theme of social well-being, the
items may refer to relationship with parents, relationship with siblings, relationship with peers and
relationship with people in the community.
In addition to considering the content of the
items, there are many other areas of scale development that require significant attention. These
include identifying the stem of the item (i.e. ‘happy
is your child with’ or ‘how would you rate your
child’s abilities’), identifying the response scale,
investigating whether the items need to be
weighted, and considering the administration
issues that are particularly pertinent for children
with intellectual disabilities (acquiescence, respondent competence; Cummins, 2004).
One further important consideration for this
proposed instrument is involvement of children. In
the current study, issues associated with the age of
the children and the structure of the questions
limited the involvement of children to those with
mild to moderate impairment. Future phases of the
instruments’ development will strive to ensure
children across the spectrum of impairment are
engaged, and an appropriate instrument ensues.
Implications for clinical interventions and
community management
The findings from this study not only have implications for the development of a QOL scale, but
also for clinical interventions and community
management. Specifically they suggest that in order
to improve the QOL of children with cerebral palsy,
clinical trials need to utilize scales that consider
among others, the child’s physical, emotional,
social, and family health, as well as their financial
stability, community acceptance and their physical
environment.
© 2005 Blackwell Publishing Ltd, Child: Care, Health & Development, 31, 2, 127–135
Development of a condition-specific measure of quality of life for children with cerebral palsy
It may be argued that it is unnecessary for clinical trials to measure some of the more ‘practical’
themes of QOL before and after intervention, as
they are not easily amenable to change. For example, an intervention assessing the effectiveness of a
particular medication may not be expected to
alter the child’s community environment. However, it must be recognized that if these ‘practical
themes’ were excluded from a clinical study of
QOL, the study cannot claim to increase total
QOL. Instead, they could only report the changes
in individual domains (e.g. physical well-being,
emotional well-being).
It is recommended however, that rather than
excluding domains of QOL that are less amenable
to change, researchers, clinicians, social workers,
psychologists and community workers collaborate
to ensure that they can understand and address
all areas of QOL. For example, they can assist
parents with access to affordable and accessible
respite, or they can advocate for supportive
school environments.
Conclusion
There now exists an empirical evidence-base for
the important aspects of QOL for children with
cerebral palsy. This data can be used to develop
a condition-specific measure, and concurrently,
aid in clinical interventions and community
management.
Acknowledgements
Funding: NHMRC grant number 284 514, Telstra
communications PLC, Murdoch Children’s
Research Institute Cerebral Palsy Theme grant,
Murdoch Children’s Research Institute salary support grant, NHMRC postdoctoral fellowship.
References
Argle, M. (1996) Subjective wellbeing. In: In Pursuit of
the Quality of Life (ed. A. Offer), pp. 18–45. Oxford
University Press, New York, USA.
Bax, M. (1964) Terminology and classification of cerebral
palsy. Developmental Medicine and Child Neurology, 6,
295–307.
133
Bjornson, K. F. & McLaughlin, J. F. (2001) The measurement of health-related quality of life (HRQOL) in children with cerebral palsy. European Journal of
Neurology, 8 (Suppl. 5), 183–193.
Boyd, R. N., Bach, T., Morris, M. E., Imms, C., Johnson,
L., Graham, H. K., Syngeniotis, A., Johnson, L.,
Abbott, D. F. & Jackson, G. D. (2003) Single blind
randomised trial of Botulinum Toxin A (BTX-A) and
upper limb training in congenital hemiplegia – activity, participation and health related quality of life.
Developmental Medicine and Child Neurology, 96
(Suppl.), 10.
Boyd, R. N. & Hays, R. M. (2001) Outcome measurement
of effectiveness of botulinum toxin type A in
children with cerebral palsy – an ICIDH-2
approach. European Journal of Neurology, 8 (Suppl. 5),
167–177.
Cummins, R. A. (2004) Issues in the systematic assessment of quality of life. In: Approaches to the Assessment
of Adults with Intellectual Disability: a Service Provider’s Guide (eds J. Hogg & A. Langa). Blackwell,
London, UK (in press).
Daltroy, L., Liang, M., Fossel, A. & Goldberg, M. (1998)
The POSNA pediatric musculoskeletal functional
health questionnaire: report on reliability, validity, and
sensitivity to change. Pediatric outcomes instrument
development group. Pediatric Orthopaedic Society of
North America. Journal of Pediatric Orthopedics, 18,
561–571.
Dite, G. S., Reddihough, D. S. & Robert, L. (1995) Second
Report of the Victorian Cerebral Palsy Register.
Anonymous. Department of Child Development
and Rehabilitation, Royal Children’s Hospital,
Melbourne, Australia.
Eiser, C., Mohay, H. & Morse, R. (2000) The measurement of quality of life in young children. Child: Care,
Health and Development, 26, 401–413.
Eiser, C. & Morse, R. (2001) A review of measures of
quality of life for children with chronic illness. Archives
of Disease in Childhood, 84, 205–211.
Gerharz, E., Eiser, C. & Woodhouse, C. (2003) Current
approaches to assessing the quality of life in children
and adolescents. BJU International, 91, 154.
Glaser, B. & Strauss, A. (1967) The Discovery of Grounded
Theory: Strategies for Qualitative Research. Aldine De
Gruyter, New York, USA.
Hagerty, M. R., Cummins, R., Ferriss, A. L., Land, K.,
Michalos, A. C., Peterson, M., Sharpe, A., Sirgy, J. &
Vogel, J. (2001) Quality of life indexes for National
Policy: review and agenda for research. Social Indicators of Research, 55, 1–96.
Houlihan, C. M., O’Donnell, M., Conaway, M.,
Stevenson, R. D. & North American Growth in
Cerebral Palsy project (2001) Bodily pain and
© 2005 Blackwell Publishing Ltd, Child: Care, Health & Development, 31, 2, 127–135
134
E. Waters et al.
health related quality of life in children with cerebral
palsy. Developmental Medicine and Child Neurology,
42, 305–310.
Irrgang, J. J. & Anderson, A. F. (2002) Development and
validation of health-related quality of life measures of
the knee. Clinical Orthopaedics and Related Research,
1, 95–109.
Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J.,
Griffith, L. E. & Townsend, M. (1996) Measuring quality of life in children with asthma. Quality of Life
Research, 5, 35–46.
Landgraf, J. M., Abetz, L. & Ware, J. E. (1996) Child
Health Questionnaire (CHQ): a User’s Manual, 1st edn.
The Health Institute, New England Medical Center,
Boston, MA, USA.
Learmonth, G. (1985) The Health of Nations. Open University Press, Milton Keynes, Boston, MA, USA.
Liptak, G., Conaway, M., Chumlea, C., Worley, G.,
Henderson, R., Fung, E., Stallings, V., Samson-Fang,
L., Calvert, R., Rosenbaum, P. & Stevenson, R. (2001)
Health status of children with moderate to severe cerebral palsy. Developmental Medicine and Child Neurology, 43, 364–370.
Mackie, P. C., Jessen, E. C. & Jarvis, S. N. (1998) The
lifestyle assessment questionnaire: an instrument to
measure the impact of disability on the lives of children with cerebral palsy and their families. Child:
Care, Health and Development, 24, 473–486.
Mackie, P. C., Jessen, E. C. & Jarvis, S. N. (2002) Creating
a measure of impact of childhood disability: statistical
methodology. Public Health, 116, 95–101.
McCarthy, M., Silberstein, C., Atkins, E., Harryman, S.,
Sponseller, P. & Hadley-Miller, N. A. (2002) Comparing reliability and validity of pediatric instruments for
measuring health and well-being of children with
spastic cerebral palsy. Developmental Medicine and
Child Neurology, 44, 468–476.
Najman, J. M. (2001) A general model of the social origins of health and well-being. In: The Social Origins of
Health and Well-Being (eds R. Eckersley, J. Dixon & B.
Douglas), pp. 73–83. Cambridge University Press,
Cambridge, UK.
Palisano, R., Rosenbaum, P., Walter, S., Russel, D.,
Wood, E. & Galuppi, B. (1997) Development and reliability of a system to classify gross motor function in
children with cerebral palsy. Developmental Medicine
and Child Neurology, 39, 214–223.
Ronen, G. M., Rosenbaum, P., Law, M. & Streiner, D. L.
(2001) Health-related quality of life in childhood disorders: a modified focus group technique to involve
children. Quality of Life Research, 10, 71–79.
Ronen, G. M., Streiner, D. L., Rosenbaum, P. &
Canadian Pediatric Epilepsy Network (2003) Health-
related quality of life in children with epilepsy: development and validation of self-report and parent proxy
measures. Epilepsia, 44, 598–612.
Schneider, J., Gurucharri, L., Gutierrez, A. L. & GaeblerSpira, D. J. (2001) Health-related quality of life and
functional outcome measures for children with cerebral palsy. Developmental Medicine and Child Neurology, 43, 601–608.
Spilker, B. & Revicki, D. A. (1996) Taxonomy of quality
of life. In: Quality of Life and Pharmacoeconomics in
clinical trials (ed. B. Spilker), pp. 25–31. LippincottRaven, Philadelphia, PA, USA.
Stanley, F., Blair, E. & Alberman, E. (2000) Cerebal
Palsies: Epidemiology and Causal Pathways (Clinics
in Developmental Medicine No. 151 ed.). Cambridge
University Press, Cambridge, UK.
Stewart, M. (2000) Pediatric outcomes research: development of an outcomes instrument for tonsil and adenoid disease. Laryngoscope, 110, 12–15.
Strauss, A. & Corbin, J. (1990) Basics of Qualitative
Research. Sage, Newbury Park, CA, USA.
Vitale, M., Levy, D., Moskowitz, A., Gelijns, A.,
Spellman, M., Verdisco, L. & Roye, D. (2001)
Capturing quality of life in pediatric orthopaedics:
two recent measures compared. Journal of Pediatrics
Orthopedics, 21, 629–635.
Wake, M., Salmon, L. & Reddihough, D. (2003) Health
status of Australian children with mild to severe cerebral palsy: cross-sectional survey using the Child
Health Questionnaire. Developmental Medicine and
Child Neurology, 45, 194–199.
Warchausky, S., Kay, J., Buchman, S., Halberg, A. &
Berger, M. (2002) Health-related quality of life in children with craniofacial anomalies. Plastic and Reconstructive Surgery, 110, 409–414.
Waters, E., Salmon, L., Wake, M., Hesketh, K. & Wright,
M. (2000a) The Child Health Questionnaire in
Australia: reliability, validity and population means.
Australian and New Zealand Journal of Public Health,
24, 207–210.
Waters, E., Salmon, L., Wake, M., Wright, M. & Hesketh,
K. (2000b) The epidemiology of adolescent health
and wellbeing using the standardised Child Health
Questionnaire. Journal of Adolescent Health, 29, 140–
149.
World Health Organization (1948) Official Records of the
World Health Organization. Anonymous. WHO,
Geneva, Switzerland.
World Health Organization (1993) Measuring Quality of
Life: the Development of The World Health Organization Quality of Life Instrument (WHOQOL).
Anonymous. Division of Mental Health, World
Health Organization, Geneva, Switzerland.
© 2005 Blackwell Publishing Ltd, Child: Care, Health & Development, 31, 2, 127–135
Development of a condition-specific measure of quality of life for children with cerebral palsy
Appendix 1 – focus group questions
1 Firstly, when everything is going great for you/
2
3
4
5
6
7
8
your child, what sorts of things are happening
in his/her life (and your family life)?
What about when things are not so good?
What sorts of activities make your child feel
like good about him/herself?
What, if any limitations does your child have?
If so, how do they affect his/her life? How do
they make him/her feel?
What is a good quality of life?
What kinds of things do you (and your child)
need for a good quality of life?
Tell me about cerebral palsy?
How does it (cerebral palsy) affect yours and
your child’s life?
• prompt: Good and bad? school? family relationships? other social relationships? general
135
health? What kind of things keep your child
healthy?
9 Thinking about the impact your child’s cerebral palsy has:
• tell me about the relationships of family
members or general family cohesion?
• tell me about the impact of your child’s cerebral palsy on the family unit as a whole?
(prompt – family activities, being able to do
things as a family)
• tell me about your child’s social relationships
(prompt – at home, at school);
• about school – does he/she have any limitations (over 5 only).
10 What about general health issues – day to
day coping strategies, general feeling of
wellbeing?
11 Are there any other issues you would like to
raise?
© 2005 Blackwell Publishing Ltd, Child: Care, Health & Development, 31, 2, 127–135