Top

Gepubliceerd in:

17-06-2022

Application of validated mapping algorithms between generic PedsQL scores and utility values to individuals with sickle cell disease

Auteurs: Boshen Jiao, Jane S. Hankins, Beth Devine, Martha Barton, M. Bender, Anirban Basu

Gepubliceerd in: Quality of Life Research | Uitgave 9/2022

Abstract

Purpose

There is a paucity of empirically estimated health state utility (HSU) values to estimate health-related quality of life among individuals with sickle cell disease (SCD). This study aims to map the Pediatric Quality of Life Inventory generic core scales (PedsQL GCS) to HSUs for children and adolescents with SCD in the United States, using published algorithms, and to assess the construct validity of these HSUs against SCD-specific PedsQL scores.

Methods

We used the published mapping algorithms identified in four published articles, in which the PedsQL GCS was mapped to either the EuroQol-5 Dimension 3-Level, Youth Version or the Child Health Utility 9-Dimension to obtain HSUs. We employed the algorithms to calculate HSUs for a sample of children and adolescents from the Sickle Cell Clinical Research and Intervention Program. To assess the construct validity of the mapped HSUs in SCD patients, we computed Spearman’s correlation coefficient comparing the HSUs with the PedsQL SCD total score and separately with each PedsQL SCD dimension-specific score.

Results

The mean mapped HSU across published algorithms was 0.792 (95% CI: 0.782–0.801). It was significantly higher among children aged 5–12 years than children aged 13–17 years. The Spearman’s correlation coefficient for HSUs versus PedsQL SCD total scores was 0.64 (95% CI: 0.57–0.71). Correlations ranged from 0.40 (95% CI: 0.32–0.48) to 0.60 (95% CI: 0.54–0.66) for HSUs versus PedsQL SCD dimension-specific scores.

Conclusions

The existing mapping algorithms show acceptable construct validity in children and adolescents with SCD. Additional algorithms are needed for adults and for specific SCD comorbidities.

vorige artikel Identifying health-related quality of life cut-off scores that indicate the need for supportive care in young adults with cancer

volgende artikel The use of composite time trade-off and discrete choice experiment methods for the valuation of the Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS): a think-aloud study

Alleen toegankelijk voor geautoriseerde gebruikers

National Heart, Lung, and Blood Institute. (n.d.). Sickle Cell Disease. Retrieved August 2, 2020, from https://www.nhlbi.nih.gov/health-topics/education-and-awareness/sickle-cell

Tanabe, P., Spratling, R., Smith, D., Grissom, P., & Hulihan, M. (2019). CE: Understanding the complications of sickle cell disease. The American Journal of Nursing, 119(6), 26–35. https://doi.org/10.1097/01.NAJ.0000559779.40570.2cCrossRefPubMedPubMedCentral

Panepinto, J. A., & Bonner, M. (2012). Health-related quality of life in sickle cell disease: Past, present, and future. Pediatric Blood & Cancer, 59(2), 377–385. https://doi.org/10.1002/pbc.24176CrossRef

Dampier, C., LeBeau, P., Rhee, S., Lieff, S., Kesler, K., Ballas, S., Comprehensive sickle cell centers (CSCC) clinical trial consortium (CTC) site investigators. (2011). Health-related quality of life in adults with sickle cell disease (SCD): A report from the comprehensive sickle cell centers clinical trial consortium. American Journal of Hematology, 86(2), 203–205. https://doi.org/10.1002/ajh.21905CrossRefPubMedPubMedCentral

Dampier, C., Lieff, S., LeBeau, P., Rhee, S., McMurray, M., Rogers, Z., & Wang, W. (2010). Health-related quality of life in children with sickle cell disease: A report from the comprehensive sickle cell centers Clinical trial consortium. Pediatric Blood & Cancer, 55(3), 485–494. https://doi.org/10.1002/pbc.22497CrossRef

Marra, C. A., Woolcott, J. C., Kopec, J. A., Shojania, K., Offer, R., Brazier, J. E., John, M. E., & Anis, A. H. (2005). A comparison of generic, indirect utility measures (the HUI2, HUI3, SF-6D, and the EQ-5D) and disease-specific instruments (the RAQoL and the HAQ) in rheumatoid arthritis. Social Science & Medicine, 60(7), 1571–1582. https://doi.org/10.1016/j.socscimed.2004.08.034CrossRef

Furber, G., & Segal, L. (2015). The validity of the child health utility instrument (CHU9D) as a routine outcome measure for use in child and adolescent mental health services. Health and Quality of Life Outcomes, 13, 22. https://doi.org/10.1186/s12955-015-0218-4CrossRefPubMedPubMedCentral

Anie, K. A., Grocott, H., White, L., Dzingina, M., Rogers, G., & Cho, G. (2012). Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease. British Medical Journal Open. https://doi.org/10.1136/bmjopen-2012-001274CrossRef

Arnold, S. D., Jin, Z., Sands, S., Bhatia, M., Kung, A. L., & Satwani, P. (2015). Allogeneic hematopoietic cell transplantation for children with sickle cell disease Is beneficial and cost-effective: A single-center analysis. Biology of Blood and Marrow Transplantation, 21(7), 1258–1265. https://doi.org/10.1016/j.bbmt.2015.01.010CrossRefPubMedPubMedCentral

10.

Ojelabi, A. O., Bamgboye, A. E., & Ling, J. (2019). Preference-based measure of health-related quality of life and its determinants in sickle cell disease in Nigeria. PLoS ONE, 14(11), e0223043. https://doi.org/10.1371/journal.pone.0223043CrossRefPubMedPubMedCentral

11.

Spackman, E., Sculpher, M., Howard, J., Malfroy, M., Llewelyn, C., Choo, L., & Williamson, L. (2014). Cost-effectiveness analysis of preoperative transfusion in patients with sickle cell disease using evidence from the TAPS trial. European Journal of Haematology, 92(3), 249–255. https://doi.org/10.1111/ejh.12232CrossRefPubMed

12.

Treadwell, M. J., Hassell, K., Levine, R., & Keller, S. (2014). Adult sickle cell quality-of-life measurement information system (ASCQ-Me). The Clinical journal of pain, 30(10), 902–914. https://doi.org/10.1097/AJP.0000000000000054CrossRefPubMedPubMedCentral

13.

Panepinto, J. A., Torres, S., Bendo, C. B., McCavit, T. L., Dinu, B., Sherman-Bien, S., & Varni, J. W. (2013). PedsQL™ sickle cell disease module: Feasibility, reliability and validity. Pediatric blood & cancer, 60(8), 1338–1344. https://doi.org/10.1002/pbc.24491CrossRef

14.

Bradt, P., Spackman, E., Synnott, P., Chapman, R., Beinfeld, M., Rind, D., & Pearson, S. (2020). Crizanlizumab, Voxelotor, and L-Glutamine for Sickle Cell Disease: Effectiveness and Value. Institute for Clinical and Economic Review. Retrieved from https://icer-review.org/material/sickle-cell-disease-draft-evidence-report/

15.

Khan, K. A., Petrou, S., Rivero-Arias, O., Walters, S. J., & Boyle, S. E. (2014). Mapping EQ-5D utility scores from the PedsQL™ generic core scales. PharmacoEconomics, 32(7), 693–706. https://doi.org/10.1007/s40273-014-0153-yCrossRefPubMed

16.

Lambe, T., Frew, E., Ives, N. J., Woolley, R. L., Cummins, C., Brettell, E. A., PREDNOS Trail Team. (2018). Mapping the paediatric quality of life inventory (PedsQL^TM) generic core scales onto the child health utility index-9 dimension (CHU-9D) score for economic evaluation in children. PharmacoEconomics, 36(4), 451–465. https://doi.org/10.1007/s40273-017-0600-7CrossRefPubMed

17.

MpunduKaambwa, C., Chen, G., Russo, R., Stevens, K., Petersen, K. D., & Ratcliffe, J. (2017). Mapping CHU9D Utility Scores from the PedsQLTM 4 0 SF-15. PharmacoEconomics, 35(4), 453–467. https://doi.org/10.1007/s40273-016-0476-yCrossRef

18.

Sweeney, R., Chen, G., Gold, L., Mensah, F., & Wake, M. (2020). Mapping PedsQLTM scores onto CHU9D utility scores: Estimation, validation and a comparison of alternative instrument versions. Quality of Life Research, 29(3), 639–652. https://doi.org/10.1007/s11136-019-02357-9CrossRefPubMed

19.

Jiao, B., Basu, A., Ramsey, S., Roth, J., Bender, M. A., Quach, D., & Devine, B. (2021). Health State Utilities for Sickle Cell Disease: A Catalog Prepared From a Systematic Review. Value in Health. https://doi.org/10.1016/j.jval.2021.08.002CrossRefPubMedPubMedCentral

20.

Varni, J. W. (1998). The PedsQL^TM - Measurement Model for the Pediatric Quality of Life inventory. Retrieved April 26, 2021, from https://www.pedsql.org/

21.

EuroQol Group. (2017). EQ-5D-Y – EQ-5D. Retrieved April 26, 2021, from https://euroqol.org/eq-5d-instruments/eq-5d-y-about/

22.

Payakachat, N., Tilford, J. M., Kuhlthau, K. A., van Exel, N. J., Kovacs, E., Bellando, J., & Brouwer, W. B. F. (2014). Predicting health utilities for children with autism spectrum disorders. Autism Research, 7(6), 649–663. https://doi.org/10.1002/aur.1409CrossRefPubMedPubMedCentral

23.

Hankins, J. S., Estepp, J. H., Hodges, J. R., Villavicencio, M. A., Robison, L. L., Weiss, M. J., & Gurney, J. G. (2018). Sickle cell clinical research and intervention program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood. Pediatric Blood & Cancer, 65(9), e27228. https://doi.org/10.1002/pbc.27228CrossRef

24.

Kim, T. H., Jo, M.-W., Lee, S., Kim, S. H., & Chung, S. M. (2013). Psychometric properties of the EQ-5D-5L in the general population of South Korea. Quality of Life Research, 22(8), 2245–2253. https://doi.org/10.1007/s11136-012-0331-3CrossRefPubMed

25.

Feeny, D., Huguet, N., McFarland, B. H., & Kaplan, M. S. (2009). The construct validity of the health utilities index mark 3 in assessing mental health in population health surveys. Quality of Life Research, 18(4), 519–526. https://doi.org/10.1007/s11136-009-9457-3CrossRefPubMedPubMedCentral

26.

Zanganeh, M., Adab, P., Li, B., & Frew, E. (2021). An assessment of the construct validity of the child health utility 9D-CHN instrument in school-aged children: evidence from a Chinese trial. Health and Quality of Life Outcomes, 19(1), 205. https://doi.org/10.1186/s12955-021-01840-7CrossRefPubMedPubMedCentral

27.

Lubeck, D., Agodoa, I., Bhakta, N., Danese, M., Pappu, K., Howard, R., & Lanzkron, S. (2019). Estimated life expectancy and income of patients with sickle cell disease compared with those without sickle cell disease. JAMA network open, 2(11), e1915374. https://doi.org/10.1001/jamanetworkopen.2019.15374CrossRefPubMedPubMedCentral

28.

Graves, J. K., & Jacob, E. (2014). Pain, coping, and sleep in children and adolescents with sickle cell disease. Journal of Child and Adolescent Psychiatric Nursing., 27(3), 109–120. https://doi.org/10.1111/jcap.12077CrossRefPubMedPubMedCentral

29.

Cooper, O., McBain, H., Tangayi, S., Telfer, P., Tsitsikas, D., Yardumian, A., & Mulligan, K. (2019). Psychometric analysis of the adult sickle cell quality of life measurement information system (ACSQ-Me) in a UK population. Health and Quality of Life Outcomes, 17(1), 74. https://doi.org/10.1186/s12955-019-1136-7CrossRefPubMedPubMedCentral

30.

Brazier, J., Roberts, J., & Deverill, M. (2002). The estimation of a preference-based measure of health from the SF-36. Journal of Health Economics, 21(2), 271–292. https://doi.org/10.1016/s0167-6296(01)00130-8CrossRefPubMed

31.

Bakshi, N., Ross, D., & Krishnamurti, L. (2018). Presence of pain on three or more days of the week is associated with worse patient reported outcomes in adults with sickle cell disease. Journal of Pain Research, 11, 313–318. https://doi.org/10.2147/JPR.S150065CrossRefPubMedPubMedCentral

32.

Hildenbrand, A. K., Quinn, C. T., Mara, C. A., Peugh, J. L., McTate, E. A., Britto, M. T., & Crosby, L. E. (2019). A preliminary investigation of the psychometric properties of PROMIS® scales in emerging adults with sickle cell disease. Health Psychology, 38(5), 386–390. https://doi.org/10.1037/hea0000696CrossRefPubMedPubMedCentral

33.

Dampier, C., Barry, V., Gross, H. E., Lui, Y., Thornburg, C. D., DeWalt, D. A., & Reeve, B. B. (2016). Initial evaluation of the pediatric PROMIS® health domains in children and adolescents with sickle cell disease. Pediatric Blood & Cancer, 63(6), 1031–1037. https://doi.org/10.1002/pbc.25944CrossRef

34.

Dewitt, B., Feeny, D., Fischhoff, B., Cella, D., Hays, R. D., Hess, R., & Hanmer, J. (2018). Estimation of a preference-based summary score for the patient-reported outcomes measurement information system: The PROMIS®-preference (PROPr) scoring system. Medical Decision Making, 38(6), 683–698. https://doi.org/10.1177/0272989X18776637CrossRefPubMedPubMedCentral

Titel: Application of validated mapping algorithms between generic PedsQL scores and utility values to individuals with sickle cell disease
Auteurs: Boshen Jiao
Jane S. Hankins
Beth Devine
Martha Barton
M. Bender
Anirban Basu
Publicatiedatum: 17-06-2022
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 9/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-022-03167-2

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusions

Log in om toegang te krijgen

Andere artikelen Uitgave 9/2022

Neurocognitive functioning and health-related quality of life of children after pediatric intensive care admission: a systematic review

A comparison of methods to address item non-response when testing for differential item functioning in multidimensional patient-reported outcome measures

An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model

Quality of mobility measures among individuals with acquired brain injury: an umbrella review

Health-related quality of life of breast and colorectal cancer patients undergoing active chemotherapy treatment: Patient-reported outcomes

Self-assessed health status and associated mortality in endocarditis: secondary findings from the POET trial