Parent and Self-reported Participation and Health-related Quality of Life in Dutch Children and Adolescents with Congenital Lower Limb Deficiencies
Anka Michielsen, Iris van Wijk, Marjolijn Ketelaar
Objective: This study describes the participation and health-related quality of live (HRQoL) in Dutch children and adolescents with congenital LLD, and compares the results with the participation and the HRQoL of the general Dutch population. Differences between parent and self reports were explored.
Design: Cross-sectional study
Methods: This study assessed participation with the Children's Assessment of Participation and Enjoyment (CAPE) and HRQoL using KIDSCREEN-52 questionnaires through self reports and parent proxy reports of 56 children and adolescents with congenital LLD aged 8-18 years. Dutch reference data from a representative national sample were used.
Results: Findings indicate a broad range of diversity and intensity of participation as reported by children and adolescents with LLD and their parents. Significant differences in diversity and intensity of skill based and social activities were found in adolescents with LLD in comparison with the reference group. Parents reported lower intensity of physical and self improvement activities in their children aged 12-18 years in comparison with the children's self report. HRQoL as reported by the children and adolescents with LLD was comparable with the Dutch reference group. Significant lower HRQoL was reported by the parents on the domains "physical well being" ( p= 0.013), "self perception" ( p= 0.001), "autonomy" ( p= 0.000) and "social relations and peers" ( p= 0.046). Parents of young children (8-11 years) with LLD perceive a lower HRQoL for their children on the domains "self perception" ( p= 0.000), "autonomy" ( p= 0.004) and "school environment" (0.032). Parents of adolescents with LLD (12-18 years) reported good HRQoL compared with Dutch reference data, except for the domain "autonomy" ( p= 0.019). Significant differences in comparing parent and self reported HRQoL were found in the domains "physical well being" ( p= 0.045), "moods and emotions" ( p= 0.006) and "self perception" ( p= 0.001).
Conclusion: Dutch children and adolescents with LLD participate in diverse activities and perceive their HRQoL similar to their healthy peers. Parents' perception of the participation is largely in accordance with the perception of their children. Especially in the younger children (8-11 years) parents perception on the HRQoL is different from the children's report.
Congenital lower limb deficiency (LLD) is a chronic disorder occurring in 2 out of 10.000 live births in The Netherlands. 1 In 40% of the children with congenital LLD both legs are affected and 30% also have defects of the upper limb.1 Although it appears that children with LLD live a life comparable to peers, limitations in the performance of physical activities are present due to dependency on prosthetic devices. 2;3 Apart from physical limitations children with LLD also differ from healthy peers in outward appearance. For being physically and visibly different, it is suggested that children and adolescents with congenital limb deficiencies are at risk for psychosocial maladjustment. 4;5
Participation and quality of life (QoL) are two key concepts in paediatric research for understanding what parents, professionals and policy want to achieve for children with disabilities. 6 Therefore, both concepts can be considered essential outcomes in describing health status and assessment of interventions. 7
In the framework of the International Classification of Functioning, Disability and Health (ICF) participation is one of the components describing function and health status and is therefore influenced by environmental and personal factors. 8 Participation is defined by the WHO as involvement in life situations or being involved in everyday activities. 8 Children's participation is influenced by perceptions of self and competence and the presence of supportive environments. 9-14 Participation in activities increases during childhood due to maturation and development of skills. 15;16 However, when children grow into adolescence diversity of participation decreases. 17
Another concept overarching all domains of the ICF framework is QoL or health related QoL (HRQoL). 18 HRQoL refers to the assessment of various aspects of health from the patient's point of view and includes physical, mental, and social well-being and functioning. 19 Self reported measures of HRQoL are recommended even in children when possible. 20 Evidence has shown that children can reliably report on their HRQoL, taken into account their emotional development, cognitive ability and reading level. 21
Report on the HRQoL of the child through both parent and self report is considered to be valuable complementary information, while it can reflect meaningful differences. 19 Parents of healthy children tend to report higher HRQoL than the children themselves, whereas parents of children with chronic conditions have a tendency to rate children's HRQoL lower than the children's own rating. 22 No consistent findings are reported on factors influencing the child-parent agreement. 23 Poor parental well being and child pain negatively influences parents' perception of their child's quality of life. 23
To date, no studies are available on how children and adolescents with LLD participate and how they perceive their HRQoL. The objective of the present study is to describe participation and HRQoL in children and adolescents with congenital LLD in comparison to Dutch children in general. In addition, differences between parent and self reports will be studies as well.
This study was a cross sectional study of children and adolescents with LLD based on questionnaires completed through self report by the children and proxy report by their parents.
Ethical approval was received from the ethical committee of Rehabilitation Centre De Hoogstraat. All parents and children gave written informed consent before participating in the study.
Children and adolescents with LLD, aged between 8 and 18 years, were recruited from Rehabilitation Centre De Hoogstraat in Utrecht, The Netherlands. The inclusion criterion was congenital deficiency of the lower limb(s) either with or without deficiency of the arm(s). Exclusion criteria were single deficiencies of arm(s) and/or combination with mental retardation or syndromale disorders.
In total 64 children/adolescents and their parents were contacted by letter with information about the study. Those who did not wish to participate in the study could return a reply note. After returning informed consent by both the children and the parents the questionnaires were sent by mail to the participants. Assistance by their parents was allowed for those children requiring help in filling out the questionnaires. Information about the degree of limb loss was obtained from the medical records of Rehabilitation Centre De Hoogstraat; for the purpose of this study they were registered as unilateral LLD, bilateral LLD and LLD in combination with deficiency of arm(s).
Participation was measured using the Children's Assessment of Participation and Enjoyment (CAPE). 24 The CAPE is a self report measure of children's participation in recreation and leisure activities outside mandated school activities. It can be used in children 6-18 years with and without disabilities. 24 The CAPE contains 55 items which are presented as drawing and text providing information regarding three aspects of participation: diversity, intensity and enjoyment. Also information is asked about with whom the child participates and where. The items measure discretionary participation, which are situations not essential for life but they represent what children can choose to do. The Cape has five scales: recreational, active physical, social, skill-based and self improvement activities. The CAPE also assesses multiple dimensions of participation, including activity diversity and intensity. Diversity scores indicate the number of activities (maximum of 53) performed by the child over the past four months. Intensity scores indicate the average amount of time the child spends participating in activities.
More diverse and intense activity participation are reflected by higher activity diversity and intensity scores. For the purpose of this study overall diversity and intensity scores of the five types of activities are used to describe the level of participation in children and adolescents with LLD. It takes approximately 30-45 minutes to fill out the CAPE. Psychometric assessments of the CAPE have demonstrated satisfactory internal consistency (Cronbach's alpha=.30-62 for activity type scores), test – retest reliability (ICC=.64-.77 for overall participation) and convergent and discriminant validity. 24 Comparative normative data for participation scores were obtained from a convenience sample of 158 Dutch children, aged 6 to 18 years (mean age 12 years; SD 3) without physical disabilities, recruited from four mainstream schools in The Netherlands. 25
Quality of life was measured using KIDSCREEN, a 52-item generic health related quality of life measure. 26 This questionnaire is designed for child and parent report and is applicable to healthy and chronically ill children and adolescents aged 8-18 years. 26 KID-SCREEN is a well validated measurement tool that allows comparison with the Dutch general population. 27 Reference data are available for gender and two age groups: 8-11 years and 12-18 years. 28 Ten domains of HRQoL are assessed: physical well being, psychological well-being, moods & emotions, self-perception, autonomy, parental relations & home life, financial resources, peers & social support, school environment, bullying. On a five point Likert scale two different sets of responses are: never, seldom, quite often, very often, always and not at all, slightly, moderately, very, extremely. For each domain, the relevant items are summed and scaled to yield a score in the range of 0-100, with higher scores indicating better quality of life. No global score can be calculated. Reliability for the domains is high, with Cronbach's alpha greater than 0.77 for all ten HRQoL domains. Item internal consistency and item discriminant validity of both KIDSCREEN-52 proxy and self report version are satisfactory. Agreement between youth and proxy report were satisfactory (ICC: 0.45-0.62). 28 The time required for administration is 15 to 20 minutes.
Descriptive statistics (frequency, means, SD) were performed to describe the sample and the children's diversity and intensity of participation. Comparison between children and adolescents with LLD and reference data was done using Student t- tests.
The child characteristics age (two age groups: 8-11 years and 12-18 years) and degree of limb loss (three subgroups: unilateral, bilateral and combinations of limb deficiencies) were studied using Mann-Whitney U- tests.
HRQoL scores for each domain for both parents and children are described as mean and standard deviation. For the purpose of this study the recommended thresholds are used which are fixed at a value of the mean (50), plus or minus half a standard deviation.28 Comparison with reference data was done by a one-sample t- test using the t-values of the reference group as test value. The scores of the children and their parents were compared with a paired t- test to determine if there were statistical significant differences between these groups. Correlations (Pearson correlation coefficient) between scores in each domain for children and parents were computed. All analyses were performed by using SPSS version 15.
Sixty four children and their parents were invited to take part in the study. One family declined participation in the study by returning the reply note, seven families declined after contacting them by telephone. The questionnaires sent return by two families got lost by mail. Both families agreed to fill out the KIDSCREEN-52 a second time but not the CAPE for taking to much time. One family refused to complete the CAPE for being of opinion that the questionnaire did not fit the lifestyle of their daughter (18 years). As a result KIDSCREEN-52 questionnaires were completed by 56 parents and their children with LLD (88%) and the CAPE was completed by 53 parents and their children (83%). Nineteen (35.8%) children required help in filling out the CAPE of which 76.2% were children younger than 12 years. In all these cases assistance was provided by the mothers who also administered the parent report.
Mean ± SD age of children with LLD was at time of completing the questionnaires 12.6 ± 3.1 years; 23 children were in the age of 8-11 years and 33 adolescents in the age of 12-18 years ( Table I ). There were 34 boys (61.4%) and 22 girls (38.6%). Unilateral LLD was present in 34 children (60.7%), bilateral LLD in 9 children (16.1%) and 13 children had combinations of LLD with either unilateral or bilateral deficiency of the arms (23.2%). Of the study participants 94.3% attended mainstream schools (primary and secondary schools), 8.9% attended special schools and one boy of 18 years did not go to school. Parent-proxy responders were 49 mothers (87.5 %) and 7 fathers (12.5%). The demographic characteristics of the participants with LLD are summarized in Table I .
Children and adolescents with LLD (8-18 years) participated in many different activities, as reported by themselves and their parents ( Table IIa ). No differences in diversity of activities were reported in children with LLD (8-11 years) in comparison with Dutch children without physical disabilities. Adolescents (12-18 years) with LLD perform statistically significantly less diverse activities than their healthy peers ( p= 0.001) ( Table IIb ). Intensity of participation reported by children and adolescents with LLD (8-18 years) in comparison with healthy peers showed no statistical significant differences. However, adolescents with LLD have statistical significant lower intensity of social activities ( p= 0.041) and skill based activities ( p= 0.008) when comparing them with adolescents without physical disabilities. When comparing parent and self reported diversity and intensity of participation in children with LLD (8-11 years), no differences were found. Parents reported statistical significant lower intensity of physical activities ( p= 0.03) and self improvement activities ( p= 0.017) in comparison with the self report of the adolescents with LLD (12-18 years). Although not statistical significant, parents reported lower intensity in social activities ( p= 0.055) in their children aged 12-18 years.
There was good to excellent agreement between parents' and children's CAPE scores: correlations were all significant (p<0.001), ranging between 0.68 for the intensity scores of physical activities and 0.92 for intensity scores of recreational activities. No differences were found between children and adolescents with different degrees of limb loss in either diversity or intensity of participation.
Quality of life
The perception of children and adolescents with LLD (8-18 years) on their HRQoL is comparable with the Dutch reference group ( Table III ). Parents of children and adolescents with LLD (8-18 years) reported significant lower HRQoL in comparison with the Dutch reference group on the domains "physical well being" ( p= 0.013) "self perception" ( p= 0.001),,"autonomy" ( p= 0.000) and "social support and peers" ( p= 0.046).
Parents reported for the young children with LLD (8-11 years) significant lower HRQoL on the domains "self perception" ( p= 0.000), "autonomy" ( p= 0.004) and "school environment" (0.032). Parents of adolescents with LLD (12-18 years) reported good HRQoL compared with Dutch reference data, except for the domain "autonomy" ( p= 0.019). No differences were found in relation to degree of limb loss.
When comparing parent and self reported HRQoL in all children and adolescents with LLD statistical significant differences were found in the domains "physical well being" ( p= 0.045), "moods and emotions" ( p= 0.006) and "self perception" ( p= 0.001). When comparing parents ratings with those of the younger children (8-11 years) statistical significant differences were found in the domains "moods and emotions" ( p= 0.022), "self perception" ( p= 0.009) and "autonomy" ( p= 0.044). No statistical significant differences were found comparing parent and self report of adolescents with LLD. Correlations between the children's and parents' HRQoL scores were significant (p<0.005), ranging between 0.28 for the scale "Moods and Emotions" and 0.56 for the scale "School" indicating fair to good agreement. Agreement on the scales "Autonomy" (r=0.10) and "Financial Resources" (r=0.15) was poor. Figure 1 presents the results from self and parent report in the two different age groups.
Objective of this study was to describe participation and HRQoL in children and adolescents with congenital LLD in comparison to Dutch children in general using parent and self reports. Key findings indicate that the participation and perceived HRQoL of Dutch children and adolescents with LLD are similar to the general Dutch population.
No differences have been found comparing parent and child report on the level of participation except for intensity of physical activities and self improvement activities in adolescents. The parents perception on the HRQoL is different in younger children. Increased participation is associated with higher levels of physical, cognitive and communicative function. 12 This might explain the findings of this study that children and adolescents with LLD participate fully. In general children with LLD have a high level of physical activity and participate in sports although most of them are dependent on prosthetic devices. 2;3
In this study adolescents with LLD reported to perform fewer diverse activities and less intensity in skill based activities and social activities in comparison with Dutch adolescents without physical disabilities. It is known from various studies that with increasing age the level of participation is decreasing 29 and that frequency of physical activity engagement is reduced as adolescents grow older. 30
The fewer diversity in participation of adolescents with LLD in this study might be a result from the time of measurement with the CAPE. The CAPE asks for activities done over the past four months which results in seasonal effects. This study was performed during the winter perhaps causing fewer diverse activities outside.
Varni et al reported that adolescents with limb deficiencies tend to be more vulnerable for negative social perceptions and behaviours. 31 In children with cerebral palsy negative reactions by others, like bullying and staring, are considered factors negatively influencing their participation. 32 Negative attitudes by others may explain why adolescents with LLD participate in fewer diverse activities.
It appears that diversity and intensity of participation of Dutch children in general is lower than participation levels of children with different diagnostic groups as described in studies from North America. 24;29;33-35 Next to demographic, environmental and functional factors, cultural factors seem to have an influence on participation as well. Comparison of participation levels between diagnostic groups in different countries should be interpreted with caution.
Like other children with physical disabilities 36-38 , children and adolescents with LLD perceive their HRQoL comparable to their healthy peers. Parents rated their child's (8-11 years) mood and emotions, self perception, and autonomy lower compared to the child's rating. This suggests that parents had a more negative perception on how the limb deficiencies has an affect on their children. This difference in parent and self report is shown in other studies in which parents of children with chronic conditions proxy report lower HRQoL than the children themselves. 22 On the other hand and in contrast with previous findings, in this study the parents rated the adolescents HRQoL similar to the adolescents themselves. This suggests a valid self report by the adolescents and perhaps a less valid self report by the children with LLD. To further explain the differences in child self report and parent proxy reports it is recommended to include variables like parental well being, socioeconomic status, family structure and mental health in future studies. 23 Furthermore some remarks can be made about the outcome measures CAPE and KIDSCREEN-52. The CAPE in contrast to the KIDSCREEN-52 does not provide a specific parent questionnaire. For the purpose of this study both the children and the parents used the same version of the questionnaire. Parents were asked to fill out the CAPE from their perspective on the participation of their children. Children were allowed to get assistance in administering the CAPE. All mothers who assisted the child also administered the parent report. This may have diminished differences between parent and self report in the children with LLD (8-11 years).
Age appropriateness of the CAPE is doubtful for the broad age span of 6-18 years. Adolescents do not always recognise themselves in the activities as described in the CAPE. Measurement of participation in at least two age bands seems more appropriate given the growing autonomy experienced by the adolescents. 39
Although the CAPE measures objectively the level of participation it does not provide an indication to which this level is perceived as good enough or as a limitation from the perspective of the person. As argued by different authors 6;9 , the subjective experience of participation is covered sufficiently by the construct of HRQoL which underlines the use of KIDSCREEN-52 in this study. In the study by Young 40 , the dimensions of KIDSCREEN-52 were compared to disabled children's accounts of their well being. The findings suggested that KID-SCREEN-52 mapped well to the children's accounts of their lives, but some specific aspects of life were missed. These included: home life, neighbourhood, siblings, pain and discomfort, inclusion and fairness in relationships, particularly peer relationships.40 Whether all aspects of life which are important to children with LLD are represented by the KIDSCREEN-52 is unclear.
Strength of this study is that it is the first one exploring participation and HRQoL of children and adolescents with congenital LLD using validated measurement tools. Data were collected through self report and through parent report. Both reports can be considered as complementary to one another, providing a broad perspective on both concepts in children with LLD. All participants were recruited from a single-centre convenience sample resulting in a high response rate. A broad geographic diversity is represented due to the supra-regional rehabilitation services of Rehabilitation Centre De Hoogstraat in The Netherlands. Limitation of this study is the lack of exploration on factors influencing participation and HRQoL. More research is needed to identify factors influencing participation and HRQoL in children and adolescents with LLD. It can optimise service planning and development of intervention programmes for both families and children with LLD.
Dutch children and adolescents with LLD participate in diverse activities and perceive their HRQoL similar to their healthy peers. Parents' perception on the participation is largely in accordance with the perception of their children. Parents tend to perceive the HRQoL of the children aged 8-11 years lower as the children do themselves. Degree of limb loss did not affect participation and the perception on the different dimensions of the HRQoL.
These findings provide a better understanding of the participation and HRQoL of Dutch children and adolescents with congenital LLD. It can reassure families and service providers that children and adolescents with congenital LLD have full potential to participate in society and that they in general perceive their lives as satisfactory.
Routine assessment of participation and HRQoL in children and adolescents with LLD should be considered as a part of rehabilitation services to provide a basis from which health care professionals, the children and their families can plan their goals on.
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- White-koning M, Arnaud C, Dickinson HO, Thyen U, Beckung E, Fauconnier J et al. Determinants of child-parent agreement in quality-of-life reports: A European study of children with cerebral palsy. Pediatrics. 2007; 120(4):e804-e814.
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- Bult MK, Verschuren O, Gorter JW, Jongmans MJ, Piškur B, Ketelaar M. Cross-cultural validation and psychometric evaluation of the Dutch language version of the Children's Assessment of Participation and Enjoyment (CAPE) in children with and without physical disabilities. Submitted for publication.
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- Maher CA, Williams MT, Olds T, Lane AE. Physical and sedentary activity in adolescents with cerebral palsy. Dev Med Child Neurol. 2007; 49:450-457.
- Varni JW, Setoguchi Y. Effects of parental adjustment on the adaptation of children with congenital or acquired limb deficiencies. J Dev Behav Pediatr. 1993;14(1):13-20.
- Shikako-Thomas K, Majnemer A, Law M, Lach L. Determinants of participation in leisure activities in children and youth with cerebral palsy: systematic review. Phys Occup Ther Pediatr. 2008; 28(2):155-169.
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