This section provides an overview of published literature describing how different versions of the EQ-5D-Y instrument have been used to measure and value HRQoL among children and adolescents in various contexts. Studies with the purpose of cultural adaptation or translation of the instrument, studies with no English full text and study protocols were excluded. The figure provides an overview of the usage of different versions of the instrument in the
published literature. Studies incorporating multiple versions of the instrument are represented in all relevant categories.
*Depending on the search terms used, the number of studies might differ. See section 3.2, in which the included studies are presented.
Figure. Distribution of the usage of different versions of the EQ-5D-Y instrument STUDIES USING THE EQ-5D-Y-3L
The EQ-5D-Y-3L has been used with the purpose of investigating HRQoL in general
populations of children and adolescents and in different disease groups. There have also been studies focusing exclusively on testing the instrument’s psychometric properties.
The EQ-5D-Y-3L in general population studies
The EQ-5D-Y-3L was developed in an international collaboration (Wille et al., 2010) (Burström et al., 2010) and the instrument’s psychometric properties in terms of feasibility, validity and reliability were supported in the general population of children and adolescents in Germany, Italy, South Africa, Spain and Sweden (Ravens-Sieberer et al., 2010; Burström et al., 2010). Population data, also called population reference data or population norms data, have been derived for several countries. Population data were derived using the Peruvian version of the instrument and showed that girls reported more problems than boys (Palacios-Cartagena et al., 2021). In Japan, derived population data revealed most problems in the mood dimension, but no variation was found between sexes or age groups when index values were investigated (Shiroiwa & Fukuda, 2021). In another general population study in Korea,
0 10 20 30 40 50 60
EQ-5D-Y-3L economic evaluation*
EQ-5D-Y-3L valuation*
EQ-5D-Y-3L value sets EQ-5D-Y-3L bolt-on EQ-5D-Y-3L proxy versions EQ-5D-Y-5L EQ-5D-Y-3L
62
older girls reported more problems than younger ones in the dimensions of ‘having pain or discomfort’ and ‘feeling worried, sad or unhappy’, and had lower mean EQ VAS scores.
Boys reported more problems with ‘looking after myself’ and with ‘doing usual activities’
(Kim et al., 2017). In China, differences in reported problems were observed only among secondary school students, where boys reported more problems with ‘doing usual activities’
and girls reported more problems with pain/discomfort and in the mood dimension (Pan et al., 2020). In a primary school setting, the EQ-5D-Y-3L instrument was used to measure
HRQoL, among other outcomes. An improvement in HRQoL was seen for the group of students engaged in art therapies (Moula et al., 2020).
The EQ-5D-Y-3L has also been used alongside the Strengths and Difficulties Questionnaire (SDQ) to assess change in schoolchildren’s mental health in England. Overall, most problems were reported in the mood dimension, with girls and older pupils reporting more problems than boys and younger pupils (Wright et al., 2020). Mental health among Canadian school children was investigated in a population-based cohort (Wu et al., 2021), with students who reported some or a lot of problems in the mood dimension being more likely to have a diagnosis of an internalising disorder.
In Korea, respondents with parents with the lowest educational level generally reported more problems in the EQ-5D-Y-3L dimensions (Kim et al., 2017). Similar findings were made by Wu et al. (2010), who showed that children in Canada from families with lower educational levels reported worse HRQoL and had lower mean EQ VAS scores than children from families with higher educational levels. Neighbourhood characteristics were also shown to impact on children’s HRQoL (Wu et al., 2010). In contrast, Baroudi et al. (2019) showed that children in Sweden with parents at high educational levels reported more problems in the mood dimension than those with parents with low or medium educational levels. This was not observed for the other dimensions. The study by Baroudi et al. (2019) was a repeated cross-sectional study in the years 2005 and 2009, where girls reported more problems with pain/discomfort and mood dimension than boys, and children living with both parents reported less problems in the mood dimension. A higher prevalence of reported problems with pain/discomfort and in the mood dimension were observed in the 2009 cohort than in the 2005 cohort (Baroudi et al., 2019). Among Japanese children, the mean EQ-5D-Y-3L index value was lower for those who had parents reporting severe stress than those with parents reporting no stress (Shiroiwa & Fukuda, 2021).
The EQ-5D-Y-3L studies in disease groups
The EQ-5D-Y-3L instrument has been used to assess HRQoL and/or to investigate the instruments psychometric properties among children and adolescents in several disease groups, see Table. Validity was indicated, as the instrument showed the ability to differentiate between children and adolescents with different severity levels of kidney disease (Hsu et al., 2018), cystic fibrosis (Eidt-Koch et al., 2009), allergic symptoms (Kim et al., 2018) or arthritis (Scott & Scott, 2019). Among children and adolescents with asthma or functional disabilities, the EQ-5D-Y-3L was feasible to use and validity was indicated (Bergfors et al., 2015). Children and adolescents with functional disabilities, except hearing disability, reported lower HRQoL than the general population (Domellöf et al., 2014). Similar results were shown among children with idiopathic clubfoot, as they reported more problems in the dimensions ‘mobility’, ‘doing usual activities’, and ‘having pain or discomfort’ than the
63
general population (Lööf, 2019). Acceptability, validity and reliability have been indicated for the online version of the instrument when used to measure HRQoL in children with type 1 diabetes (Mayoral et al., 2019).
Children with allergic symptoms reported more problems in the dimensions ‘having pain or discomfort’ and ‘feeling worried, sad or unhappy’ than healthy controls, and feasibility was supported as few missing values were observed (Kim et al., 2018). Among children and adolescents with type 1 diabetes, the highest prevalence of reported problems was in the mood dimension (Murillo et al., 2017; Miranda Velasco et al., 2012). Diabetes patients with few complications and low blood sugar levels reported better HRQoL than those with high blood sugar levels (López-Bastida et al., 2019). A longitudinal study among children and adolescents with asthma, diabetes or arthritis showed that respondents with health complaints or mental health problems reported worse HRQoL than those not reporting health complaints or mental problems (Otto et al., 2018). Furthermore, children and adolescents with ADHD reported lower HRQoL with both the EQ-5D-Y-3L and the Child Health Utility-9
Dimensions (CHU-9D) instruments compared with healthy controls (Peasgood et al., 2016).
The instrument has also been used to evaluate outcomes from a two-armed trial with computerised cognitive-behavioural therapy for depression in adolescents (Wright et al., 2017). From baseline to a four-months follow-up, HRQoL increased in both groups. In a study of children with coeliac disease, no differences in HRQoL were observed between those already having the diagnosis, those diagnosed during the study and those without the disease (Nordyke et al., 2011). Among children with arthrogryposis multiplex congenital, no differences in HRQoL were observed between respondents who used orthoses and those who did not (Eriksson et al., 2018). The findings of Scott et al. (2017) indicated that the instrument performed better, in terms of psychometric properties, in acutely ill children than in
chronically ill or healthy children (Scott et al., 2017). Among patients with partial-onset seizures, adjunctive therapy did not affect HRQoL negatively (Trigg et al., 2021). Among patients with thalassemia, the EQ-5D-Y-3L was used alongside the PedsQL, and patients reported most problems with pain/discomfort and in the mood dimension
(Sinlapamongkolkul & Surapolchai, 2020). When the instrument was used to follow up patients with trauma treated at paediatric trauma centres, reduction in HRQoL was still present at a 12-months follow-up (Curtis et al., 2020).
The EQ-5D-Y-3L has been included as a secondary outcome among children seeking
healthcare for knee symptoms (Örtqvist et al., 2014). Correlations were observed between the primary outcome measure, the Knee injury and Osteoarthritis Outcome Score Child and the EQ-5D-Y-3L dimension ‘doing usual activities’. This was also used as a secondary outcome to investigate the prognosis in Osgood-Schlatter disease, and improved HRQoL was observed at a 24-month follow-up (Holden et al., 2021). Convergent validity of the Child Oral Health Impact Profile was indicated through support of expected correlations with the EQ-5D-Y-3L (Sierwald et al., 2016). The instrument was also included to test the psychometric properties of a newly developed disease-specific instrument for children and adolescents with hip problems (Herngren et al., 2017).
Lifestyle factors and the EQ-5D-Y-3L
Better diet quality, being physically active and having a normal bodyweight were positively associated with better HRQoL (Wu et al., 2012). In line with these results, better diet quality
64
was positively associated with less problems in the mood dimension (McMartin et al., 2013).
The instrument has been used to measure the outcome of an intervention for children and adolescents with overweight and obesity, with improvements observed in all dimensions except mobility (Perez-Sousa et al., 2018). Further, the association between HRQoL and daily physical activity, cardiorespiratory fitness and body mass index has been investigated.
The results indicated that parental physical activity might predict a child’s physical activity, but results regarding HRQoL were somewhat unclear (Saavedra et al., 2014). Among long distance runners, no differences were observed between high-level and low-level runners as regards HRQoL (Garcia et al., 2021). Petracci & Cavrini (2013) concluded that sedentary behaviour was associated with worse HRQoL.
HRQoL of siblings measured with the EQ-5D-Y-3L
The instrument has been used to investigate the HRQoL of siblings of children and
adolescents with chronic fatigue syndrome (Velleman et al., 2016) or ADHD (Peasgood et al., 2016). Siblings of children with chronic fatigue syndrome reported HRQoL equal to that of the general population (Ravens-Sieberer et al., 2010). Similar results were found among siblings of children with ADHD, where no change in HRQoL was observed (Peasgood et al., 2016).
The EQ-5D-Y-3L compared with other instruments
Performance of the EQ-5D-Y-3L has been compared with that of the adult version EQ-5D-3L among 8─11-years-old, showing that the youth version was superior, as fewer missing values were observed (Jelsma, 2010). Both the web-based and the paper-and-pencil versions were able to discriminate between different levels of general health, and feasibility was indicated by few missing values (Robles et al., 2015).
Comparing the EQ-5D-Y-3L to the CHU-9D, few missing values were observed for both instruments (Canaway & Frew, 2013; Chen et al., 2015; Ryan et al., 2020). The CHU-9D was concluded to be superior. However, in that study, the value set for the adult version EQ-5D-3L was used to calculate values for health states (Canaway & Frew, 2013). Both instruments were considered to be feasible to measure HRQoL among children and adolescents with cerebral palsy, though the instruments showed low agreement and should not be used interchangeably (Ryan et al., 2020). In contrast, Chen et al. (2015) showed good levels of agreement between these two instruments and indicated convergent validity for them (Chen et al., 2015). Children’s ability to understand terms and concepts used in the EQ-5D-Y-3L, the adult version EQ-5D-3L and the Health Utility Index (HUI) has been investigated. In terms of missing values, both EQ-5D instruments were superior to the HUI (Oluboyede et al., 2013). One study compared several HRQoL instruments and summarised their characteristics with the purpose of informing healthcare personnel in choosing an instrument (Petersson et al., 2013). Craig et al. (2014) compared different versions of the EQ-5D instrument and concluded that both the youth version EQ-5D-Y-3L, and the adult version, EQ-5D-5L, reduced ceiling effects compared with the adult version EQ-5D-3L when measuring health among the general population (Craig et al., 2014).
Bolt-ons are dimensions that could be added to an instrument to overcome perceived shortcomings of the instrument in a specific patient population. A cognitive bolt-on to the EQ-5D-Y-3L instrument has been developed and tested (Ludwig et al., 2021). The following
65
four items were identified and included: school performance, concentration, memory and learning ability. The conclusion was that the bolt-on improved the measurement of HRQoL.
STUDIES USING THE EQ-5D-Y-3L PROXY VERSION
The agreement between proxy and self-reported HRQoL was found to be poor among
children with cerebral palsy and their parents or caregivers (Perez Sousa et al., 2017). Fathers reported less problems in all dimensions than mothers or children themselves. Children with mobility impairments self-reported less problems than their parent did in proxy reports. In a study (Bray et al., 2017) where the value set for the adult version EQ-5D-3L was applied to calculate values for the EQ-5D-Y-3L. Another study found fair to moderate agreement between proxy and self-report and that children reported less problems than their female caregivers (Jelsma & Ramma, 2010). Moderate agreement has also been found between proxy and self-report, among children and adolescents with diabetes type 1 (Lopez-Bastida et al., 2019). At a group level, good agreement in HRQoL was found between proxy and self-report among children with functional constipation (van Summeren et al., 2018). The proxy version has been used to assess HRQoL in a general population of school children (Gaitan-Lopez et al., 2017) and among children with ADHD (Matza et al., 2005). Proxy and self-completed versions of the EQ-5D-Y-3L and the EQ-5D-Y-5L were used to compare patient self-reports and caregiver proxy report (Zhou et al., 2021). In general, caregivers reported better health than patients across all dimensions except in the mood dimension, but caregivers reported lower mean EQ VAS score than patients (Zhou et al., 2021).
The EQ-5D-Y-3L proxy version was tested among children aged 3–6 years (Verstraete et al., 2020). The dimension ‘looking after myself’ was problematic, especially among the youngest children, and the pain/discomfort and mood dimensions were less stable over time (Verstraete et al., 2020). Caregivers to children with peanut allergy reported their children’s HRQoL online with the proxy version; mean EQ VAS score was lower for those with severe allergy than those with mild allergy, and caregivers’ anxiety was correlated with all measures of HRQoL (Acaster et al., 2020). Psychometric properties of the EQ-5D-Y-3L were investigated in Japan (Shiroiwa et al., 2019), with the test-retest reliability found to be higher for proxy reports than self-reports, but construct validity was not indicated for the proxy version. In a study of patients with type 1 diabetes, caregivers gave valid proxy reports using the proxy version (López-Bastida et al., 2019). Lack of agreement between physician-reported and self-reported HRQoL was observed with the instrument before ambulatory surgery. However, post-surgery reports were similar (Brazo-Sayavera et al., 2018).
STUDIES USING THE EQ-5D-Y-5L
The EQ-5D-Y-5L is a relatively new version of the instrument, developed in an international collaboration (Kreimeier et al., 2019). The instrument was found to have acceptability among patients in child and adolescent psychiatric inpatient care (Krig et al., 2021). When the instrument was administered to patients with juvenile idiopathic arthritis through a mobile application (Doeleman et al., 2021), it was able to distinguish between patients with different disease severity. The instrument has also been used as a secondary outcome to investigate the PedsQL among patients with spine and limb pathologies (Cheung et al., 2020). Sleep,
physical activity and screen time were shown to impact on HRQoL (Wong et al., 2021).
When deriving population data for the EQ-5D-Y-5L among a general population in Hong
66
Kong, boys were shown to report more problems with mobility and usual activities and girls more problems in the mood dimension (Wong et al., 2021).
STUDIES COMPARING THE EQ-5D-Y-3L AND THE EQ-5D-Y-5L
When comparing the youth version with three severity levels, the EQ-5D-Y-3L, and the version with five severity levels, the EQ-5D-Y-5L, equal performance was observed among patients with idiopathic scoliosis, though there was a reduction in ceiling effects for the EQ-5D-Y-5L (Wong & Cheung, 2019). In another study by Wong et al. (2019) the
responsiveness of both the versions was investigated among patients with idiopathic scoliosis (Wong et al., 2019) and values were calculated using the value set for the adult Chinese versions of the instruments. The versions were found to be equally responsive in this patient group (Wong et al., 2019). The youth versions have also been compared in an inpatient care setting (Zhou et al., 2021) and showed no missing responses either at baseline or at follow-up. Slightly more problems were reported when using the EQ-5D-Y-5L version, especially in the mobility dimension. Both youth versions have been used, together with the
KIDSCREEN-10 instrument, to measure health among schoolchildren; low numbers of missing responses and validity were indicated with all three instruments (Pei et al., 2021).
67
Table. Overview of disease groups in which versions of the EQ-5D-Y instrument have been applied.
Disease group Version/s of the instrument Reference
EQ-5D-Y-3L Kim et al., 2018
Proxy version Acaster et al., 2020
Ambulatory surgery EQ-5D-Y-3L; Proxy version Brazo-Sayavera et al., 2018
EQ-5D-Y-3L Otto et al., 2018
EQ-5D-Y-3L Scott & Scott, 2019 Arthrogryposis multiplex congenital EQ-5D-Y-3L Eriksson et al., 2018
EQ-5D-Y-3L Bergfors et al., 2015
EQ-5D-Y-3L Otto et al., 2018
EQ-5D-Y-3L Peasgood et al., 2016
Proxy version Matza et al., 2005
EQ-5D-Y-3L Ryan et al., 2020
EQ-5D-Y-3L; Proxy version Sousa et al., 2017
Chronic fatigue syndrome EQ-5D-Y-3L Velleman et al., 2016
Coeliac disease EQ-5D-Y-3L Nordyke et al., 2011
Cystic fibrosis EQ-5D-Y-3L Eidt-Koch et al., 2009
Dental health - Orthodontics EQ-5D-Y-3L Sierwald et al., 2016
Depression EQ-5D-Y-3L Wright et al., 2017
EQ-5D-Y-3L Murillo et al., 2017
EQ-5D-Y-3L Otto et al., 2018
EQ-5D-Y-3L Miranda et al., 2012
EQ-5D-Y-3L Burström et al., 2014
EQ-5D-Y-3L Mayoral et al., 2019
Functional constipation EQ-5D-Y-3L; Proxy version van Summeren et al., 2017 EQ-5D-Y-3L; Proxy version Lopéz-Bastida et al., 2019
EQ-5D-Y-3L Domelöff et al., 2014
EQ-5D-Y-3L Lööf, 2019
EQ-5D-Y-3L; Proxy version Bray et al., 2017
EQ-5D-Y-5L Wong & Cheung, 2019
EQ-5D-Y-5L Wong et al., 2019
Juvenile idiopathic arthritis EQ-5D-Y-5L Doeleman et al., 2021
Kidney disease EQ-5D-Y-3L Hsu et al., 2018
Leukaemia or haematological malignancies EQ-5D-Y-3L; EQ-5D-Y-5L Zhou et al., 2020
EQ-5D-Y-3L Holden et al., 2021
EQ-5D-Y-3L Ortqvist et al., 2014
Partial-onset seizures EQ-5D-Y-3L Trigg et al., 2021
Psychiatric disorders EQ-5D-Y-5L Krig et al., 2020
Slipped capital femoral epiphysis EQ-5D-Y-3L Herngren et al., 2017
Spine and limb pathologies EQ-5D-Y-5L Cheung et al., 2020
Thalassemia EQ-5D-Y-3L Sinlapamongkolkul et al., 2020
Trauma EQ-5D-Y-3L Curtis et al., 2020
Allergy
Idiopathic scoliosis
Osgood-Schlatter disease and knee symptoms Arthritis
Diabetes Asthma
Cerebral palsy
Functional disabilities
Attention Deficit-Hyperactivity Disorder (ADHD)
68
APPENDIX A: REFERENCES
Acaster, S., Gallop, K., de Vries, J., Ryan, R., Vereda, A., & Knibb, R. C. (2020). Peanut allergy impact on
productivity and quality of life (PAPRIQUA): Caregiver-reported psychosocial impact of peanut allergy on children. Clin Exp Allergy, 50(11), 1249-1257.
Baroudi, M., Petersen, S., Namatovu, F., Carlsson, A., Ivarsson, A., & Norström, F. (2019). Preteen children's health related quality of life in Sweden: changes over time and disparities between different sociodemographic groups. 19(1), 139.
Bergfors, S., Åström, M., Burström, K., & Egmar, A. C. (2015). Measuring health-related quality of life with the EQ-5D-Y instrument in children and adolescents with asthma. Acta Paediatr, 104(2), 167-173.
Bray, N., Noyes, J., Harris, N., & Edwards, R. T. (2017). Measuring the health-related quality of life of children with impaired mobility: examining correlation and agreement between children and parent proxies. BMC Res Notes, 10(1), 377.
Brazo-Sayavera, J., Parejo-Cabezas, I. M., Gusi, N., & Olivares, P. R. (2018). Effects of a minor surgery on health related quality of life in children from different perspectives. Gac Med Mex, 154(1), 36-41.
Burström, K., Bartonek, A., Brostrom, E. W., Sun, S., & Egmar, A. C. (2014). EQ-5D-Y as a health-related quality of life measure in children and adolescents with functional disability in Sweden: testing feasibility and validity.
Acta Paediatr, 103(4), 426-435.
Burström, K, Egmar A.C., Lugner, A., Eriksson, M., & Svartengren M. (2010). A Swedish child-friendly pilot version of the EQ-5D instrument — the development process. Eur J Public Health, 21(2), 1-7.
Burström, K, Svartengren, M., & Egmar, AC. (2010). Testing a Swedish child-friendly pilot version of the EQ-5D instrument - Initial results. Eur J Public Health, 21(2), 178-183.
Canaway, A. G., & Frew, E. J. (2013). Measuring preference-based quality of life in children aged 6-7 years: a comparison of the performance of the CHU-9D and EQ-5D-Y-the WAVES Pilot Study. Quality of Life Research, 22(1), 173-183.
Chen, G., Flynn, T., Stevens, K., Brazier, J., Huynh, E., Sawyer, M., Roberts, R., & Ratcliffe, J. (2015). Assessing the Health-Related Quality of Life of Australian Adolescents: An Empirical Comparison of the Child Health Utility 9D and EQ-5D-Y Instruments. Value Health, 18(4), 432-438.
Cheung, P. W. H., Wong, C. K. H., & Cheung, J. P. Y. (2020). Comparative study of the use of Paediatric Quality Of Life Inventory 4.0 generic core scales in paediatric patients with spine and limb pathologies. Bone Joint J, 102-b(7), 890-898.
Craig, B. M., Pickard, A. S., & Lubetkin, E. I. (2014). Health problems are more common, but less severe when measured using newer EQ-5D versions. J Clin Epidemiol, 67(1), 93-99.
Curtis, K., Kennedy, B., Lam, M. K., Mitchell, R. J., Black, D., Burns, B., White, L., Loudfoot, A., Dinh, M., &
Holland, A. J. A. (2020). Cause, treatment costs and 12-month functional outcomes of children with major injury in NSW, Australia. Injury, 51(9), 2066-2075.
Doeleman, M. J. H., de Roock, S., Buijsse, N., Klein, M., Bonsel, G. J., Seyfert-Margolis, V., Swart, J.F., & Wulffraat, N. M. (2021). Monitoring patients with juvenile idiopathic arthritis using health-related quality of life.
Pediatr Rheumatol Online J, 19(1), 40.
Domellöf, E., Hedlund, L., & Ödman, P. (2014). Health-related quality of life of children and adolescents with functional disabilities in a northern Swedish county. Qual Life Res, 23(6), 1877-1882.
Eidt-Koch, D., Mittendorf, T., & Greiner, W. (2009). Cross-sectional validity of the EQ-5D-Y as a generic health outcome instrument in children and adolescents with cystic fibrosis in Germany. BMC Pediatr, 9, 55.
Eriksson, M., Jylli, L., Villard, L., Kroksmark, A. K., & Bartonek, A. (2018). Health-related quality of life and orthosis use in a Swedish population with arthrogryposis. Prosthetics and Orthotics International, 42(4), 402-409.
Gaitan-Lopez, D. F., Correa-Bautista, J. E., Vinaccia, S., & Ramirez-Velez, R. (2017). Self-report health-related quality of life among children and adolescents from Bogota, Colombia. The FUPRECOL study. Colomb Med (Cali), 48(1), 12-18.
Garcia, M. C., Taylor-Haas, J. A., Rauh, M. J., Toland, M. D., & Bazett-Jones, D. M. (2021). Sport Specialization in Middle- and High-School Long-Distance Runners. J Athl Train.
Herngren, B., Stenmarker, M., & Enskar, K. (2017). Barnhoft: a hip specific 6-item questionnaire for children. J Patient Rep Outcomes, 1(1), 16.
69 Holden, S., Olesen, J. L., Winiarski, L. M., Krommes, K., Thorborg, K., Hölmich, P., & Rathleff, M. S. (2021). Is the
Prognosis of Osgood-Schlatter Poorer Than Anticipated? A Prospective Cohort Study With 24-Month Follow-up. Orthop J Sports Med, 9(8).
Hsu, C. N., Lin, H. W., Pickard, A. S., & Tain, Y. L. (2018). EQ-5D-Y for the assessment of health-related quality of life among Taiwanese youth with mild-to-moderate chronic kidney disease. International Journal for Quality in Health Care, 30(4), 298-305.
Jelsma, J. (2010). A comparison of the performance of the EQ-5D and the EQ-5D-Y health-related quality of life instruments in South African children. Int J Rehabil Res, 33(2), 172-177.
Jelsma, J., & Ramma, L. (2010). How do children at special schools and their parents perceive their HRQoL compared to children at open schools? Health Qual Life Outcomes, 8, 72.
Kim, S. K., Jo, M. W., & Kim, S. H. (2017). A cross sectional survey on health-related quality of life of elementary school students using the Korean version of the EQ-5D-Y. PeerJ, 5, e3115.
Kim, S. K., Jo, M. W., & Kim, S. H. (2018). Health-related quality of life by allergy symptoms in elementary school students. 16(1), 93.
Kreimeier, S., Åström, M., Burström, K., Egmar, A. C., Gusi, N., Herdman, M., Kind, P., Perez-Sousa, M.A., &
Greiner, W. (2019). EQ-5D-Y-5L: developing a revised EQ-5D-Y with increased response categories. Qual Life Res, 28(7), 1951-1961.
Krig, S., Åström, M., Kulane, A., & Burström, K. (2021). Acceptability of the health-related quality of life instrument EQ-5D-Y-5L among patients in child and adolescent psychiatric inpatient care. Acta Paediatr, 110(3), 899-906.
Lööf, E. (2019). Neurodevelopmental difficulties negatively affect health-related quality of life in children with idiopathic clubfoot. Eur J Health Econ, 108(8), 1492-1498.
López -Bastida, J., López -Siguero, J. P., Oliva-Moreno, J., Vazquez, L. A., Aranda-Reneo, I., Reviriego, J., Dilla, T., Perez-Nieves, M. (2019). Health-related quality of life in type 1 diabetes mellitus pediatric patients and their caregivers in Spain: an observational cross-sectional study. Current Medical Research and Opinion, 35(9), 1589-1595.
Ludwig, K., Surmann, B., Räcker, E., & Greiner, W. (2021). Developing and testing a cognitive bolt-on for the EQ-5D-Y (Youth). Qual Life Res. 2021. doi: 10.1007/s11136-021-02899-x.
Matza, L. S., Secnik, K., Mannix, S., & Sallee, F. R. (2005). Parent-proxy EQ-5D ratings of children with attention-deficit hyperactivity disorder in the US and the UK. Pharmacoeconomics, 23(8), 777-790.
Mayoral, K., Rajmil, L., Murillo, M., Garin, O., Pont, A., Alonso, J., Bel, J., Perez, J., Corripio, R., Carreras, G., Herrero, J., Mengibar, J.M, Rodriguez-Arjona, D., Ravens-Sieberer, U., Raat, H., Serra-Sutton, V., & Ferrer, M. (2019). Measurement Properties of the Online EuroQol-5D-Youth Instrument in Children and
Adolescents With Type 1 Diabetes Mellitus: Questionnaire Study. J Med Internet Res, 21(11), e14947.
McMartin, S. E., Willows, N. D., Colman, I., Ohinmaa, A., Storey, K., & Veugelers, P. J. (2013). Diet quality and feelings of worry, sadness or unhappiness in Canadian children. Can J Public Health, 104(4), e322-326.
Miranda Velasco, M. J., Dominguez Martin, E., Arroyo Diez, F. J., Mendez Perez, P., & Gonzalez de Buitrago Amigo, J. (2012). [Health related quality of life in type 1 diabetes mellitus]. An Pediatr (Barc), 77(5), 329-333.
Moula, Z., Powell, J., & Karkou, V. (2020). An Investigation of the Effectiveness of Arts Therapies Interventions on Measures of Quality of Life and Wellbeing: A Pilot Randomized Controlled Study in Primary Schools. Front Psychol, 11, 586134.
Murillo, M., Bel, J., Perez, J., Corripio, R., Carreras, G., Herrero, X., Mengibar, J.M., Rodriguez-Arjona, D., Ravens-Sieberer, U., Raat, H., & Rajmil, L. (2017). Health-related quality of life (HRQOL) and its associated factors in children with Type 1 Diabetes Mellitus (T1DM). BMC Pediatr, 17(1), 16.
Nordyke, K., Norstrom, F., Lindholm, L., Carlsson, A., Danielsson, L., Emmelin, M., Hogberg, L., Karlsson, E., &
Ivarsson, A. (2011). Health-related quality-of-life in children with coeliac disease, measured prior to receiving their diagnosis through screening. J Med Screen, 18(4), 187-192.
Oluboyede, Y., Tubeuf, S., & McCabe, C. (2013). Measuring health outcomes of adolescents: report from a pilot study. Eur J Health Econ, 14(1), 11-19.
Ortqvist, M., Iversen, M. D., Janarv, P. M., Brostrom, E. W., & Roos, E. M. (2014). Psychometric properties of the Knee injury and Osteoarthritis Outcome Score for Children (KOOS-Child) in children with knee disorders.
Br J Sports Med, 48(19), 1437-1446.
70
Otto, C., Barthel, D., Klasen, F., Nolte, S., Rose, M., Meyrose, A. K., Klein, M., Thyren, U., & Ravens-Sieberer, U.
(2018). Predictors of self-reported health-related quality of life according to the EQ-5D-Y in chronically ill children and adolescents with asthma, diabetes, and juvenile arthritis: longitudinal results. Qual Life Res, 27(4), 879-890.
Palacios-Cartagena, R. P., Adsuar, J. C., Hernández-Mocholí, M., Carlos-Vivas, J., Barrios-Fernández, S., Garcia-Gordillo, M. A., & Mendoza-Muñoz, M. (2021). Health-Related Quality of Life Norm Data of the Peruvian Adolescents: Results Using the EQ-5D-Y. Int J Environ Res Public Health, 18(16).
Pan, C. W., Zhong, H., Li, J., Suo, C., & Wang, P. (2020). Measuring health-related quality of life in elementary and secondary school students using the Chinese version of the EQ-5D-Y in rural China. BMC Public Health, 20(1), 982.
Peasgood, T., Bhardwaj, A., Biggs, K., Brazier, J. E., Coghill, D., Cooper, C. L., Daley, D., De Silva C., Harpin, V., Hodgkins, P., Nadkarni, A., Setyawan, J., & Sonuga-Barke, E. J. (2016). The impact of ADHD on the health and well-being of ADHD children and their siblings. Eur Child Adolesc Psychiatry, 25(11), 1217-1231.
Pei, W., Yue, S., Zhi-Hao, Y., Ruo-Yu, Z., Bin, W., & Nan, L. (2021). Testing measurement properties of two EQ-5D youth versions and KIDSCREEN-10 in China. Eur J Health Econ, 22(7), 1083-1093.
Perez-Sousa, M. A., Olivares, P. R., Garcia-Hermoso, A., & Gusi, N. (2018). Does anthropometric and fitness parameters mediate the effect of exercise on the HRQoL of overweight and obese children/adolescents? Qual Life Res, 27(9), 2305-2312.
Perez Sousa, M. A., Olivares Sanchez-Toledo, P. R., & Gusi Fuerte, N. (2017). Parent-child discrepancy in the assessment of health- related quality of life using the EQ-5D-Y questionnaire. Arch Argent Pediatr, 115(6), 541-546.
Petersson, C., Simeonsson, R. J., Enskar, K., & Huus, K. (2013). Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). Health Qual Life Outcomes, 11, 75.
Petracci, E., & Cavrini, G. (2013). The effect of weight status, lifestyle, and body image perception on health-related quality of life in children: a quantile approach. Qual Life Res, 22(9), 2607-2615.
Ravens-Sieberer, U., Wille, N., Badia, X., Bonsel, G., Burström, K., Cavrini, G., Devlin, N., Egmar, A.C., Gusi, N., Herdman, M., Jelsma, J., Kind, P., Olivares, P.R., Scalone, L., & Greiner, W. (2010). Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res, 19(6), 887-897.
Robles, N., Rajmil, L., Rodriguez-Arjona, D., Azuara, M., Codina, F., Raat, H., Ravens-Sieberer, U., & Herdman, M.
(2015). Development of the web-based Spanish and Catalan versions of the Euroqol 5D-Y (EQ-5D-Y) and comparison of results with the paper version. Health Qual Life Outcomes, 13, 72.
Ryan, J. M., McKay, E., Anokye, N., Noorkoiv, M., Theis, N., & Lavelle, G. (2020). Comparison of the CHU-9D and the EQ-5D-Y instruments in children and young people with cerebral palsy: a cross-sectional study. BMJ Open, 10(9), e037089.
Saavedra, J. M., Escalante, Y., Dominguez, A. M., Garcia-Hermoso, A., & Hernandez-Mocholi, M. A. (2014).
Prediction of correlates of daily physical activity in Spanish children aged 8-9 years. Scand J Med Sci Sports, 24(3), e213-219.
Scott, D., Ferguson, G. D., & Jelsma, J. (2017). The use of the EQ-5D-Y health related quality of life outcome measure in children in the Western Cape, South Africa: psychometric properties, feasibility and usefulness - a longitudinal, analytical study. Health Qual Life Outcomes, 15(1), 12.
Scott, D., & Scott, C. (2019). Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa. 75(1), 1335.
Shiroiwa, T. (2019). Psychometric properties of the Japanese version of the EQ-5D-Y by self-report and proxy-report:
reliability and construct validity. BMJ Open. doi:10.1136/bmjopen-2019-029474
Shiroiwa, T., & Fukuda, T. (2021). EQ-5D-Y Population Norms for Japanese Children and Adolescents.
Pharmacoeconomics. doi:10.1007/s40273-021-01063-0
Sierwald, I., John, M. T., Sagheri, D., Neuschulz, J., Schuler, E., Splieth, C., Jost-Brinkmann, P. G., & Reissmann, D.
R. (2016). The German 19-item version of the Child Oral Health Impact Profile: translation and psychometric properties. Clin Oral Investig, 20(2), 301-313.
71 Sinlapamongkolkul, P., & Surapolchai, P. (2020). Health-Related Quality of Life in Thai Children with Thalassemia as
Evaluated by PedsQL and EQ-5D-Y: A Single-Center Experience. Mediterr J Hematol Infect Dis, 12(1), e2020036.
Trigg, A., Brohan, E., Cocks, K., Jones, A., Tahami Monfared, A. A., Chabot, I., Meier, G., Campbell, R., Li, H., &
Ngo, L. Y. (2021). Health-related quality of life in pediatric patients with partial onset seizures or primary generalized tonic-clonic seizures receiving adjunctive perampanel. Epilepsy Behav, 118, 107938.
van Summeren, J., Klunder, J. W., Holtman, G. A., Kollen, B. J., Berger, M. Y., & Dekker, J. H. (2018). Parent-child Agreement on Health-Related Quality of Life in Children With Functional Constipation in Primary Care.
Journal of Pediatric Gastroenterology and Nutrition, 67(6), 726-731.
Velleman, S., Collin, S. M., Beasant, L., & Crawley, E. (2016). Psychological wellbeing and quality-of-life among siblings of paediatric CFS/ME patients: A mixed-methods study. Clin Child Psychol Psychiatry, 21(4), 618-633.
Verstraete, J., Lloyd, A., Scott, D., & Jelsma, J. (2020). How does the EQ-5D-Y Proxy version 1 perform in 3, 4 and 5-year-old children? Health Qual Life Outcomes, 18(1), 149.
Wille, N., Badia, X., Bonsel, G., Burström, K., Cavrini, G., Devlin, N., Egmar, A. C., Greiner, W., Gusi, N., Herdman, M., Jelsma, J., Kind, P., Scalone, L., & Ravens-Sieberer, U. (2010). Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Qual Life Res, 19(6), 875-886.
Wong, C. K. H., & Cheung, P. W. H. (2019). A head-to-head comparison of five-level (EQ-5D-5L-Y) and three-level EQ-5D-Y questionnaires in paediatric patients. 20(5), 647-656.
Wong, C. K. H., Cheung, P. W. H., Luo, N., Lin, J., & Cheung, J. P. Y. (2019). Responsiveness of EQ-5D Youth version 5-level (EQ-5D-5L-Y) and 3-level (EQ-5D-3L-Y) in Patients With Idiopathic Scoliosis. Spine (Phila Pa 1976), 44(21), 1507-1514.
Wong, C. K. H., Wong, R. S., Cheung, J. P. Y., Tung, K. T. S., Yam, J. C. S., Rich, M., Fu, K. W., Cheung, P. W., Lou, N., Au, C. H., Zhang, A., Wong, W.H.S., Fan, J., Lam, C.L.K., Ip, P. (2021). Impact of sleep duration, physical activity, and screen time on health-related quality of life in children and adolescents. Health Qual Life Outcomes, 19(1), 145.
Wright, B., Garside, M., Allgar, V., Hodkinson, R., & Thorpe, H. (2020). A large population-based study of the mental health and wellbeing of children and young people in the North of England. Clin Child Psychol Psychiatry, 25(4), 877-890.
Wright, B., Tindall, L., Littlewood, E., Allgar, V., Abeles, P., Trepel, D., & Ali, S. (2017). Computerised cognitive-behavioural therapy for depression in adolescents: feasibility results and 4-month outcomes of a UK randomised controlled trial. BMJ Open, 7(1), e012834.
Wu, X., Veugelers, P. J., & Ohinmaa, A. (2021). Health Behavior, Health-Related Quality of Life, and Mental Health Among Canadian Children: A Population-Based Cohort Study. Front Nutr, 8, 638259.
Wu, X. Y., Ohinmaa, A., & Veugelers, P. J. (2010). Sociodemographic and neighbourhood determinants of health-related quality of life among grade-five students in Canada. Qual Life Res, 19(7), 969-976.
Wu, X. Y., Ohinmaa, A., & Veugelers, P. J. (2012). Diet quality, physical activity, body weight and health-related quality of life among grade 5 students in Canada. Public Health Nutr, 15(1), 75-81.
Zhou, W., Shen, A., Yang, Z., Wang, P., Wu, B., Herdman, M., & Luo, N. (2021). Patient-caregiver agreement and test-retest reliability of the EQ-5D-Y-3L and EQ-5D-Y-5L in paediatric patients with haematological malignancies. Eur J Health Econ, 22(7), 1103-1113.
72