https://doi.org/10.4081/ripppo.2022.581
Measuring health-related quality of life measures in children: lessons from a pilot study
Submitted: September 10, 2021
Accepted: April 2, 2022
Published: May 9, 2022
Accepted: April 2, 2022
Abstract Views: 1598
PDF: 460
HTML: 76
HTML: 76
Publisher's note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.
Authors
There is a debate in the health outcomes literature regarding who the most appropriate respondent is when assessing children’s health-related quality of life (HRQoL). In some cases, parent-proxy may be the only practical option where children are unable to self-complete an HRQoL questionnaire. However, children’s self-reported values may be preferable because HRQoL is subjective and represents the respondent own perception of health. We collected the youth version of the EQ-5D-3L as part of a feasibility study comparing psychoanalytic child psychotherapy with usual care for children aged 5-11 years with treatment resistant conduct disorders. The questionnaires were completed at baseline and 4-month follow-up by the child via face-to-face researcher administration, and by one parent as a proxy respondent. We present percentages of completion at each time-point and investigate the level of agreement between child and proxy-respondent on the child’s health. About two thirds of children (65.5%) were able to complete the EQ-5D-Y at baseline and 34.4% at follow-up. Children and primary carers were mostly concordant regarding overall child’s health. Parents reported more problems in ‘doing usual activities’ and ‘feeling worried, sad or unhappy’ and fewer problems with ‘pain’ and ‘looking after oneself’ than children did. The reports regarding ‘mobility’ were very similar between children and proxy-respondents. The assessment of quality of life by children using selfreport questionnaires is possible with the help of a face-to-face researcher, providing evidence that children should be asked to self-complete HRQoL questionnaires in trial studies.
Baars, R. M., Atherton, C. I., Koopman, H. M., Bullinger, M., & Power, M. (2005). The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health and Quality of Life Outcomes, 3(1). doi:10.1186/1477-7525-3-70.
DOI: https://doi.org/10.1186/1477-7525-3-70
Belfort, M. B., Zupancic, J. A.F., Riera, K.M., Turner, J. HG., & Prosser, L. A. (2011). Health state preferences associated with weight status in children and adolescents. BMC Pediatrics, 11(12). doi:10.1186/1471-2431-11-12.
DOI: https://doi.org/10.1186/1471-2431-11-12
Bray, N., Noyes, J., Harris, N., & Tudor Edwards, R. (2017). Measuring the health-related quality of life of children with impaired mobility: examining correlation and agreement between children and parent proxies. BMC Research Notes 10(337). doi:10.1186/s13104-017-2683-9.
DOI: https://doi.org/10.1186/s13104-017-2683-9
Di Biase, R., Evans, C., Rebecchi, D., Baccari, F., Saltini, A., Bravi, E., Palmieri, G., & Starace, F. (2021). Exploration of psychometric properties of the Italian version of the Core Young Person’s Clinical Outcomes in Routine Evaluation (YP-CORE). (2021). Research in Psychotherapy: Psychopathology, Process and Outcome, 24(2), 231-239. doi:10.4081/ripppo.2021.554.
DOI: https://doi.org/10.4081/ripppo.2021.554
Drummond, M. F., Sculpher, M. J., Claxton, K., Stoddart, G. L., & Torrance, G. W. (2015). Methods for the Economic Evaluation of Health Care Programmes (Oxford Medical Publications) (4th ed.). Oxford University Press.
Edginton, E., Walwyn, R., Burton, K., Cicero, R., Graham, L., Reed, S., Tubeuf, S., Twiddy, M., Wright-Hughes, A., Ellis, L., Evans, D., Hughes, T., Midgley, N., Wallis, P., & Cottrell, D. (2017). TIGA-CUB - manualised psychoanalytic child psychotherapy versus treatment as usual for children aged 5-11 years with treatment-resistant conduct disorders and their primary carers: study protocol for a randomised controlled feasibility trial. Trials, 18(1). doi:10.1186/s13063-017-2166-2.
DOI: https://doi.org/10.1186/s13063-017-2166-2
Edginton, E., Walwyn, R., Twiddy, M., Wright-Hughes, A., Tubeuf, S., Reed, S., Smith, A., Stubbs, L., Birtwistle, J., Abraham, S. J., Ellis, L., Midgley, N., Hughes, T., Wallis, P., & Cottrell, D. (2018). TIGA-CUB-manualised psychoanalytic child psychotherapy versus treatment as usual for children aged 5-11 with treatment-resistant conduct disorders and their primary carers: results from a randomised controlled feasibility trial. Journal of Child & Adolescent Mental Health, 30(3), 167-182. doi:10.2989/17280583.2018.1532433.
DOI: https://doi.org/10.2989/17280583.2018.1532433
Jackson, E. (2004). Trauma revisited: A 5-year-old’s journey from experiences, to thoughts, to words, towards hope. Journal of Child Psychotherapy, 30(1), 53-70. doi:10.1080/0075417042000205797.
DOI: https://doi.org/10.1080/0075417042000205797
Jelsma, J., & Ramma, L. (2010). How do children at special schools and their parents perceive their HRQoL compared to children at open schools? Health and Quality of Life Outcomes, 8(72). doi:10.1186/1477-7525-8-72.
DOI: https://doi.org/10.1186/1477-7525-8-72
Jiang, M., Ma, Y., Li, M., Meng, R., Ma, A., & Chen, P. (2021). A comparison of self-reported and proxy-reported health utilities in children: a systematic review and meta-analysis. Health and Quality of Life Outcomes, 19(1). doi:10.1186/s12955-021-01677-0.
DOI: https://doi.org/10.1186/s12955-021-01677-0
Khadka, J., Kwon, J., Petrou, S., Lancsar, E., & Ratcliffe, J. (2019). Mind the (inter-rater) gap. An investigation of self-reported versus proxy-reported assessments in the derivation of childhood utility values for economic evaluation: A systematic review. Social Science & Medicine, 240, 112543. doi:10.1016/j.socscimed.2019.112543.
DOI: https://doi.org/10.1016/j.socscimed.2019.112543
Kolko, D. J., & Kazdin, A. E. (1993). Emotional/behavioral problems in clinic and nonclinic children: correspondence among child, parent and teacher reports. Journal of Child Psychology and Psychiatry, 34(6), 991-1006. doi:10.1111/j.1469-7610.1993.tb01103.x.
DOI: https://doi.org/10.1111/j.1469-7610.1993.tb01103.x
Kulpeng, W., Sornsrivichai, V., Chongsuvivatwong, V., Rattanavipapong, W., Leelahavarong, P., Cairns, J., Lubell, Y., & Teerawattananon, Y. (2013). Variation of health-related quality of life assessed by caregivers and patients affected by severe childhood infections. BMC Pediatrics, 13(122). doi:10.1186/1471-2431-13-122.
DOI: https://doi.org/10.1186/1471-2431-13-122
Kwon, J., Kim, SW., Ungar, WJ., Tsiplova, K., Madan, J., & Petrou, S. (2019). Patterns, trends and methodological associations in the measurement and valuation of childhood health utilities. Quality of Life Research, 28(7), 1705-1724. doi:10.1007/s11136-019-02121-z.
DOI: https://doi.org/10.1007/s11136-019-02121-z
Mack, J. W., McFatrich, M., Withycombe, J. S., Maurer, S. H., Jacobs, S. S., Lucas, N. R., Baker, J. N., Mann, C. M., Sung, L., Tomlinson, D., Hinds, P. S., & Reeve, B. B. (2020). Agreement between child self-report and caregiver proxy report for symptoms and functioning of children undergoing cancer treatment. JAMA Paediatrics, 174(11), e202861. doi:10.1001/jamapediatrics.2020.2861.
DOI: https://doi.org/10.1001/jamapediatrics.2020.2861
Magagna, J., & Piercey, J. (2020). Collaborative Work with Parents. British Journal of Psychotherapy, 36(2), 275-293. doi:10.1111/bjp.12526.
DOI: https://doi.org/10.1111/bjp.12526
Manfredi, C., Caselli, G., Pescini, F., Rossi, M., Rebecchi, D., Ruggiero, G. M., & Sassaroli, S. (2016). Parental criticism, self-criticism, and their relation to depressive mood: an exploratory study among a non-clinical population. Research in Psychotherapy, Psychopathology, Process and Outcome, 19(1), 41-48. doi:10.4081/ripppo.2016.178.
DOI: https://doi.org/10.4081/ripppo.2016.178
Miscioscia, M., Simonelli, A., Svanellini, L., Sisti, M., Sudati, L., Brianda, M. E., Battistella, P. A., & Gatta, M. (2018). An integrated approach to child psychotherapy with co-parental support: a longitudinal outcome study. Research in Psychotherapy, Psychopathology, Process and Outcome, 21(2), 63-71. doi:10.4081/ripppo.2018.297.
DOI: https://doi.org/10.4081/ripppo.2018.297
Otero, SC., Eiser, C., Wright N.P., & Butler, G. (2013). Implications of parent and child quality of life assessments for decisions about growth hormone treatment in eligible children. Child: Care, Health and Development, 39(6), 782-780. doi:10.1111/cch.12021.
DOI: https://doi.org/10.1111/cch.12021
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? Quality of Life Research, 27(9), 2305-2312. doi:10.1007/s11136-018-1893-5.
DOI: https://doi.org/10.1007/s11136-018-1893-5
Rabin, R., & Charro, F. D. (2001). EQ-SD: a measure of health status from the EuroQol Group. Annals of Medicine, 33(5), 337-343. doi:10.3109/07853890109002087.
DOI: https://doi.org/10.3109/07853890109002087
Reyes, A. D. L., Augenstein, T.M., Wang, M., Thomas, S.A., Drabick, D. A. G., Burgers, D. E., & Rabinowitz, J. (2016). The validity of multi-informant approach to assessing child and adolescent mental health. Psychological Bulletin, 141(4), 858-900. doi:10.1037/a0038498.
DOI: https://doi.org/10.1037/a0038498
Robertson, W., Fleming, J., Kamal, A., Hamborg, T., Khan, K. A., Griffiths, F., Stewart-Brown, S., Stallard, N., Petrou, S., Simkiss, D., Harrison, E., Kim, S. W., & Thorogood, M. (2016). Randomised controlled trial and economic evaluation of the ‘Families for Health’ programme to reduce obesity in children. Archives of Disease in Childhood, 102(5), 416-426. doi:10.1136/archdischild-2016-311514.
DOI: https://doi.org/10.1136/archdischild-2016-311514
Salbach- Andrae, H., Klinkowski, N., Lenz, K., & Lehmkuhl, U. (2009). Agreement between youth-reported and parent-reported psychopathology in a referred sample. European Child and Adolescent Psychiatry, 18(3), 136-143. doi:10.1007/s00787-008-0710-z.
DOI: https://doi.org/10.1007/s00787-008-0710-z
Sharp, W. (2014). Sticks and Stones May Break My Bones, But What About Words? International Journal of Group Psychotherapy, 64(3), 280-296. doi:10.1521/ijgp.2014.64.3.280.
DOI: https://doi.org/10.1521/ijgp.2014.64.3.280
Ungar, W. J. (2011). Challenges in Health State Valuation in Paediatric Economic Evaluation. PharmacoEconomics, 29(8), 641-652. doi:10.2165/11591570-000000000-00000.
DOI: https://doi.org/10.2165/11591570-000000000-00000
Van der Meer, M., Dixon, A., & Rose, D. (2008). Parents and child agreement on reports of problem behaviour obtained from a screening questionnaire the SDQ. European Child and Adolescent Psychiatry, 17(8), 491-497. doi:10.1007/s00787-008-0691-y.
DOI: https://doi.org/10.1007/s00787-008-0691-y
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 and Quality of Life Outcomes, 18(1), doi:10.1186/s12955-020-01410-3.
DOI: https://doi.org/10.1186/s12955-020-01410-3
Wang, A., Rand, K., Yang, Z., Brooks, R., & Busschbach, J. (2021). The remarkably frequent use of EQ-5D in non-economic research. The European Journal of Health Economics, doi:10.1007/s10198-021-01411-z.
DOI: https://doi.org/10.1007/s10198-021-01411-z
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. Quality of Life Research, 19(6), 875-886. doi:10.1007/s11136-010-9648-y.
DOI: https://doi.org/10.1007/s11136-010-9648-y
Wittenberg, I. (1999). Ending therapy. Journal of Child Psychotherapy, 25(3), 339-356. doi:10.1080/00754179908260300.
DOI: https://doi.org/10.1080/00754179908260300
Wolstenholme, J. L., Bargo, D., Wang, K., Harnden, A., Räisänen, U., & Abel, L. (2018). Preference-based measures to obtain health state utility values for use in economic evaluations with child-based populations: a review and UK-based focus group assessment of patient and parent choices. Quality of Life Research, 27(7), 1769-1780. doi:10.1007/s11136-018-1831-6.
DOI: https://doi.org/10.1007/s11136-018-1831-6
How to Cite
Abraham, S., Edginton, E., Cottrell, D., & Tubeuf, S. (2022). Measuring health-related quality of life measures in children: lessons from a pilot study. Research in Psychotherapy: Psychopathology, Process and Outcome, 25(1). https://doi.org/10.4081/ripppo.2022.581
Copyright (c) 2022 the Author(s)
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
PAGEPress has chosen to apply the Creative Commons Attribution NonCommercial 4.0 International License (CC BY-NC 4.0) to all manuscripts to be published.
Similar Articles
- Bruno Faustino, António Branco Vasco, Ana Nunes Silva, Telma Marques, Relationships between emotional schemas, mindfulness, self-compassion and unconditional self-acceptance on the regulation of psychological needs , Research in Psychotherapy: Psychopathology, Process and Outcome: Vol. 23 No. 2 (2020)
- Francesca Giannone, Cinzia Guarnaccia, Salvatore Gullo, Maria Di Blasi, Cecilia Giordano, Gianluca Lo Coco, Gary Burlingame, Italian adaptation of the Group Questionnaire: validity and factorial structure , Research in Psychotherapy: Psychopathology, Process and Outcome: Vol. 23 No. 2 (2020)
- Fernanda Munhoz Driemeier Schmidt, Guilherme Pacheco Fiorini, Vera Regina Rohnelt Ramires, Psychoanalytic psychotherapy and the pregnant therapist: a literature review , Research in Psychotherapy: Psychopathology, Process and Outcome: Vol. 18 No. 2 (2015): Special issue on Qualitative and Quantitative Research in Child and Adolescent Psychotherapy: part 1
You may also start an advanced similarity search for this article.
