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25-04-2020

Exploring health state utility values of parents of children with a serious illness

Auteurs: Ishani K. Majmudar, Lidia Engel, Frank Muscara, Christopher Stevenson, Maria McCarthy, Vicki Anderson, Cathrine Mihalopoulos

Gepubliceerd in: Quality of Life Research | Uitgave 7/2020

Abstract

Purpose

In cost-utility analysis, outcomes are usually measured in terms of quality-adjusted life years, where length of life is adjusted by levels of health-related quality of life (HRQoL) using a single value, known as a health state utility value (HSUV). This study explores the HSUVs of parents of children with a serious illness admitted within three hospital departments (cardiology, oncology and paediatric intensive care) across four time points, compares HSUVs with Australian population norms and examines predictors of parental HSUVs.

Methods

Data were obtained from the Take a Breath study, where parental HSUVs were measured using the Assessment of Quality of Life-8 Dimensions (AQoL-8D). Descriptive statistics and t-tests compared the AQoL-8D scores with population norms, while repeated measures ANOVA was used to compare parental HSUVs of children treated across illness groups over time. Regression analysis was performed to determine predictors of parental HSUVs.

Results

Parental HSUVs were not significantly different from the general Australian population norms (p = 0.939), as measured by the AQoL-8D. However, statistically significant differences were observed in the psychosocial super-dimension (p < 0.01) and in all eight AQoL-8D dimensions, except for senses and self-worth. No significant differences were observed across illness groups. Parental HSUVs were associated with psychosocial risk factors of trait anxiety (p < 0.001), depression (p < 0.001) and family beliefs (p = 0.024).

Conclusion

Having a child with a severe illness has an impact on the psychosocial aspects of parental HRQoL regardless of the type of illness. Psychosocial health factors of trait anxiety, depression and family beliefs were important predictors of parental HSUV.

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Cousino, M. K., & Hazen, R. A. (2013). Parenting stress among caregivers of children with chronic illness: A systematic review. Journal of Pediatric Psychology,38(8), 809–828. https://doi.org/10.1093/jpepsy/jst049.CrossRefPubMed

Torrance, G. W. (1987). Utility approach to measuring health-related quality of life. Journals of Chronic Diseases,40(6), 593–600.CrossRef

Arafa, M. A., Zaher, S. R., El-Dowaty, A. A., & Moneeb, D. E. (2008). Quality of life among parents of children with heart disease. Health Quality of Life Outcomes,6, 91. https://doi.org/10.1186/1477-7525-6-91.CrossRefPubMed

Chien, L.-Y., Lo, L.-H., Chen, C.-J., Chen, Y.-C., Chiang, C.-C., & Chao, Y.-M. Y. (2003). Quality of life among primary caregivers of Taiwanese children with brain tumor. Cancer Nursing,26(4), 305–311.CrossRef

Gronning Dale, M. T., Solberg, O., Holmstrom, H., Landolt, M. A., Eskedal, L. T., & Vollrath, M. E. (2013). Well-being in mothers of children with congenital heart defects: A 3-year follow-up. Quality of Life Research,22(8), 2063–2072. https://doi.org/10.1007/s11136-012-0326-0.CrossRefPubMed

Hatzmann, J., Heymans, H. S., Ferrer-i-Carbonell, A., van Praag, B. M., & Grootenhuis, M. A. (2008). Hidden consequences of success in pediatrics: Parental health-related quality of life–results from the Care Project. Pediatrics,122(5), e1030–1038. https://doi.org/10.1542/peds.2008-0582.CrossRefPubMed

Klassen, A. F., Dix, D., Papsdorf, M., Klaassen, R. J., Yanofsky, R., & Sung, L. (2012). Impact of caring for a child with cancer on single parents compared with parents from two-parent families. Pediatric Blood & Cancer,58(1), 74–79. https://doi.org/10.1002/pbc.22952.CrossRef

Klassen, A. F., Klaassen, R., Dix, D., Pritchard, S., Yanofsky, R., O'Donnell, M., et al. (2008). Impact of caring for a child with cancer on parents' health-related quality of life. Journal of Clinical Oncology,26(36), 5884–5889. https://doi.org/10.1200/JCO.2007.15.2835.CrossRefPubMed

Landolt, M. A., Buechel, E. V., & Latal, B. (2011). Predictors of parental quality of life after child open heart surgery: A 6-month prospective study. Journal of Pediatrics,158(1), 37–43. https://doi.org/10.1016/j.jpeds.2010.06.037.CrossRefPubMed

10.

Litzelman, K., Catrine, K., Gangnon, R., & Witt, W. P. (2011). Quality of life among parents of children with cancer or brain tumors: The impact of child characteristics and parental psychosocial factors. Quality of Life Research,20(8), 1261–1269. https://doi.org/10.1007/s11136-011-9854-2.CrossRefPubMedPubMedCentral

11.

Quast, L. F., Turner, E. M., McCurdy, M. D., & Hocking, M. C. (2016). Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy. Journal of Psychosocial Oncology,34(4), 274–290. https://doi.org/10.1080/07347332.2016.1175535.CrossRefPubMedPubMedCentral

12.

Salvador, Á., Crespo, C., Martins, A. R., Santos, S., & Canavarro, M. C. (2014). Parents’ perceptions about their child’s illness in pediatric cancer: Links with caregiving burden and quality of life. Journal of Child and Family Studies,24(4), 1129–1140. https://doi.org/10.1007/s10826-014-9921-8.CrossRef

13.

Santo, E. A. R. D. E., Gaiva, M. A. M., Espinosa, M. M., Barbosa, D. A., Belasco, A., & l. G. a. S., (2011). Taking care of children with cancer: Evaluation of the caregivers' burden and quality of life. Revista Latino-Americana de Enfermagem (RLAE),19(3), 515–522. https://doi.org/10.1590/S0104-11692011000300010.CrossRef

14.

Sileshi, L., & Tefera, E. (2017). Health-related quality of life of mothers of children with congenital heart disease in a sub-Saharan setting: Cross-sectional comparative study. BMC Research Notes,10(1), 513. https://doi.org/10.1186/s13104-017-2856-6.CrossRefPubMedPubMedCentral

15.

Yamazaki, S., Sokejima, S., Mizoue, T., Eboshida, A., & Fukuhara, S. (2005). Health-related quality of life of mothers of children with leukemia in Japan. Quality of Life Research,14(4), 1079–1085. https://doi.org/10.1007/s11136-004-3288-z.CrossRefPubMed

16.

Khan, M. A., Richardson, J., & O'Brien, P. (2012). The effect of obesity upon Health Related Quality of Life (HRQoL): A comparison of the AQoL-8D and SF-36 instruments. Health economics and therapeutic pathways,13(2), 14. https://doi.org/10.7175/fe.v13i2.208.CrossRef

17.

Drummond, M. A., Claxton, K., Sculpher, M. J., Stoddart, G. L., & Torrance, G. W. (2015). Methods for the economic evaluation of health care programmes (4th ed., p. 2015). Oxford: Oxford University Press.

18.

Brooks, R. (1996). EuroQol: The current state of play. Health Policy,37(1), 53–72.CrossRef

19.

Economics, C. F. H. (2014). AQoL Assessment of quality of life. Retrieved May 26, 2018, from https://www.aqol.com.au/.

20.

Brazier, J., Roberts, J., & Deverill, M. (2002). The estimation of a preference-based measure of health from the SF-36. Journal of Health Economicss,21(2), 271–292.CrossRef

21.

Hawthorne, G., Korn, S., & Richardson, J. (2013). Population norms for the AQoL derived from the 2007 Australian National Survey of Mental Health and Wellbeing. Australian and New Zealand Journal of Public Health,37(1), 7–16. https://doi.org/10.1111/1753-6405.12004.CrossRefPubMed

22.

Janssen, B., & Szende, A. (2014). Population norms for the EQ-5D. In A. Szende, B. Janssen, & J. Cabases (Eds.), Self-reported population health: An international perspective based on EQ-5D (pp. 19–30). Dordrecht: Springer.CrossRef

23.

Maxwell, A., Ozmen, M., Iezzi, A., & Richardson, J. (2016). Deriving population norms for the AQoL-6D and AQoL-8D multi-attribute utility instruments from web-based data. Quality of Life Research,25(12), 3209–3219. https://doi.org/10.1007/s11136-016-1337-z.CrossRefPubMed

24.

Muscara, F., Burke, K., McCarthy, M. C., Anderson, V. A., Hearps, S. J., Hearps, S. J., et al. (2015). Parent distress reactions following a serious illness or injury in their child: A protocol paper for the take a Breath Cohort Study. BMC Psychiatry,15, 153. https://doi.org/10.1186/s12888-015-0519-5.CrossRefPubMedPubMedCentral

25.

Spielberger, C. D., Gorsuch, R. L., Lushene, R., Vagg, P. R., & Jacobs, G. A. (1983). Manual for the state-trait anxiety inventory. Palo Alto, CA: Consulting Psychologists Press.

26.

Lovibond, P. F., & Lovibond, S. H. (1995). The structure of negative emotional states: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behaviour Research and Therapy,33(3), 335–343.CrossRef

27.

Pai, A. L., Patino-Fernandez, A. M., McSherry, M., Beele, D., Alderfer, M. A., Reilly, A. T., et al. (2008). The Psychosocial Assessment Tool (PAT2.0): Psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. Journal of Pediatric Psychology,33(1), 50–62. https://doi.org/10.1093/jpepsy/jsm053.CrossRefPubMed

28.

Bryant, R. A., Moulds, M. L., & Guthrie, R. M. (2000). Acute Stress Disorder Scale: A self-report measure of acute stress disorder. Psychological Assessment,12(1), 61–68.CrossRef

29.

Mihalopoulos, C., Chen, G., Iezzi, A., Khan, M. A., & Richardson, J. (2014). Assessing outcomes for cost-utility analysis in depression: Comparison of five multi-attribute utility instruments with two depression-specific outcome measures. British Journal of Psychiatry,205(5), 390–397. https://doi.org/10.1192/bjp.bp.113.136036.CrossRefPubMed

30.

Richardson, J., Iezzi, A., Khan, M., Sinha, K., Mihalopoulos, C., Herrman, H., et al. (2009). Data used in the development of the AQoL-8D (PsyQoL) Quality of Life Instrument. Melbourne: Centre for Health Economics, Monash University.

31.

Richardson, J., Khan, M. A., Iezzi, A., & Maxwell, A. (2015). Comparing and explaining differences in the magnitude, content, and sensitivity of utilities predicted by the EQ-5D, SF-6D, HUI 3, 15D, QWB, and AQoL-8D multiattribute utility instruments. Medical Decision Making,35(3), 276–291. https://doi.org/10.1177/0272989X14543107.CrossRefPubMed

32.

Richardson, J., Sinha, K., Iezzi, A., & Khan, M. A. (2014). Modelling utility weights for the Assessment of Quality of Life (AQoL) 8D. Quality of Life Research,23, 2395–2404. https://doi.org/10.1007/s11136-014-0686-8.CrossRefPubMed

33.

Richardson, J., Iezzi, A., Khan, M. A., & Maxwell, A. (2014). Validity and reliability of the Assessment of Quality of Life (AQoL)-8D multi-attribute utility instrument. Patient,7(1), 85–96. https://doi.org/10.1007/s40271-013-0036-x.CrossRefPubMed

34.

Richardson, J., Iezzi, A., Khan, M. A., Chen, G., & Maxwell, A. (2016). Measuring the sensitivity and construct validity of 6 utility instruments in 7 disease areas. Medical Decision Making,36(2), 147–159. https://doi.org/10.1177/0272989X15613522.CrossRefPubMed

35.

StataCorp. (2017). Stata statistical software: Release 15. College Station, TX: StataCorp LLC.

36.

Lindsey, C., & Sheather, S. (2010). Variable selection in linear regression. The Stata Journal,10(4), 650–669.CrossRef

37.

Burnham, K. P., & Anderson, D. R. (2004). Multimodel inference: Understanding AIC and BIC in model selection. Sociological Methods & Research,33(2), 261–304. https://doi.org/10.1177/0049124104268644.CrossRef

38.

Austin, P. C., Escobar, M., & Kopec, J. A. (2000). The use of the Tobit model for analyzing measures of health status. Quality of Life Research,9(8), 901–910.CrossRef

39.

Woolf, C., Muscara, F., Anderson, V. A., & McCarthy, M. C. (2016). Early traumatic stress responses in parents following a serious illness in their child: A systematic review. Journal of Clinical Psychology in Medical Settings,23(1), 53–66. https://doi.org/10.1007/s10880-015-9430-y.CrossRefPubMed

40.

Kolaitis, G. A., Meentken, M. G., & Utens, E. (2017). Mental health problems in parents of children with congenital heart disease. Frontiers in Pediatrics,5, 102. https://doi.org/10.3389/fped.2017.00102.CrossRefPubMedPubMedCentral

41.

Price, J., Kassam-Adams, N., Alderfer, M. A., Christofferson, J., & Kazak, A. E. (2016). Systematic review: A reevaluation and update of the integrative (trajectory) model of pediatric medical traumatic stress. Journal of Pediatric Psychology,41(1), 86–97. https://doi.org/10.1093/jpepsy/jsv074.CrossRefPubMed

Titel: Exploring health state utility values of parents of children with a serious illness
Auteurs: Ishani K. Majmudar
Lidia Engel
Frank Muscara
Christopher Stevenson
Maria McCarthy
Vicki Anderson
Cathrine Mihalopoulos
Publicatiedatum: 25-04-2020
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 7/2020
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-020-02466-w

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Abstract

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