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Gepubliceerd in: Quality of Life Research 1/2018

07-09-2017

Assessing responsiveness over time of the PROMIS® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease

Auteurs: Bryce B. Reeve, Lloyd J. Edwards, Byron C. Jaeger, Pamela S. Hinds, Carlton Dampier, Debbie S. Gipson, David T. Selewski, Jonathan P. Troost, David Thissen, Vaughn Barry, Heather E. Gross, Darren A. DeWalt

Gepubliceerd in: Quality of Life Research | Uitgave 1/2018

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Abstract

Purpose

Previous studies provided evidence for the validity of the PROMIS Pediatric measures in cross-sectional studies. This study evaluated the ability of the PROMIS Pediatric measures to detect change over time in children and adolescents with cancer, nephrotic syndrome (NS), or sickle cell disease (SCD).

Methods

Participants (8–17 years) completed measures of fatigue, pain interference, anger, anxiety, depressive symptoms, mobility, upper extremity, and peer relationships at three or four time points (T1–T4). Between T1 and T2, children with cancer received chemotherapy and children with SCD experienced a pain exacerbation. Children with NS were first assessed during active disease (T2), with T3 and T4 conducted at disease remission. For the primary analysis of responsiveness, we expected better scores at T3 (recovery) compared to T2 (event) for all diseases. T1 and T4 are also expected to have better scores than T2. Linear mixed models were used and adjusted for time, gender, age, race/ethnicity, education, comorbid conditions, and disease.

Results

Enrolled were 96 children with cancer, 121 children with SCD, and 127 children with NS. Fatigue, pain interference, mobility, and upper extremity scores worsened from T1 (baseline) to T2 (event) (p < 0.01), and significantly improved from T2 to T3 and T4 (p < 0.01). Similarly, anxiety and depressive symptoms significantly improved from T2 to T3 and T4 (p < 0.01).

Conclusions

This study provides evidence for the responsiveness of seven PROMIS Pediatric measures to clinical disease state in three chronic illnesses. The findings support use of PROMIS Pediatric measures in clinical research.
Literatuur
1.
go back to reference DeWitt, E. M., Stucky, B. D., Thissen, D., Irwin, D. E., Langer, M., Varni, J. W., et al. (2011). Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: Built using item response theory. Journal of Clinical Epidemiology, 64(7), 794–804. doi:10.1016/j.jclinepi.2010.10.012.CrossRefPubMedPubMedCentral DeWitt, E. M., Stucky, B. D., Thissen, D., Irwin, D. E., Langer, M., Varni, J. W., et al. (2011). Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: Built using item response theory. Journal of Clinical Epidemiology, 64(7), 794–804. doi:10.​1016/​j.​jclinepi.​2010.​10.​012.CrossRefPubMedPubMedCentral
3.
go back to reference Lai, J. S., Stucky, B. D., Thissen, D., Varni, J. W., DeWitt, E. M., Irwin, D. E., et al. (2013). Development and psychometric properties of the PROMIS((R)) pediatric fatigue item banks. Quality of Life Research, 22(9), 2417–2427. doi:10.1007/s11136-013-0357-1.CrossRefPubMed Lai, J. S., Stucky, B. D., Thissen, D., Varni, J. W., DeWitt, E. M., Irwin, D. E., et al. (2013). Development and psychometric properties of the PROMIS((R)) pediatric fatigue item banks. Quality of Life Research, 22(9), 2417–2427. doi:10.​1007/​s11136-013-0357-1.CrossRefPubMed
5.
go back to reference Irwin, D. E., Stucky, B. D., Langer, M. M., Thissen, D., DeWitt, E. M., Lai, J. S., et al. (2012). PROMIS Pediatric Anger Scale: An item response theory analysis. Quality of Life Research, 21(4), 697–706. doi:10.1007/s11136-011-9969-5.CrossRefPubMed Irwin, D. E., Stucky, B. D., Langer, M. M., Thissen, D., DeWitt, E. M., Lai, J. S., et al. (2012). PROMIS Pediatric Anger Scale: An item response theory analysis. Quality of Life Research, 21(4), 697–706. doi:10.​1007/​s11136-011-9969-5.CrossRefPubMed
6.
go back to reference Dewalt, D. A., Thissen, D., Stucky, B. D., Langer, M. M., Morgan Dewitt, E., Irwin, D. E., et al. (2013). PROMIS Pediatric Peer Relationships Scale: Development of a peer relationships item bank as part of social health measurement. Health Psychology, 32(10), 1093–1103. doi:10.1037/a0032670.CrossRefPubMed Dewalt, D. A., Thissen, D., Stucky, B. D., Langer, M. M., Morgan Dewitt, E., Irwin, D. E., et al. (2013). PROMIS Pediatric Peer Relationships Scale: Development of a peer relationships item bank as part of social health measurement. Health Psychology, 32(10), 1093–1103. doi:10.​1037/​a0032670.CrossRefPubMed
7.
go back to reference DeWalt, D. A., Gross, H. E., Gipson, D. S., Selewski, D. T., DeWitt, E. M., Dampier, C. D., et al. (2015). PROMIS((R)) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research, 24(9), 2195–2208. doi:10.1007/s11136-015-0953-3.CrossRefPubMedPubMedCentral DeWalt, D. A., Gross, H. E., Gipson, D. S., Selewski, D. T., DeWitt, E. M., Dampier, C. D., et al. (2015). PROMIS((R)) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research, 24(9), 2195–2208. doi:10.​1007/​s11136-015-0953-3.CrossRefPubMedPubMedCentral
8.
go back to reference Gipson, D. S., Selewski, D. T., Massengill, S. F., Wickman, L., Messer, K. L., Herreshoff, E., et al. (2013). Gaining the PROMIS perspective from children with nephrotic syndrome: A midwest pediatric nephrology consortium study. Health and Quality of Life Outcomes, 11, 30. doi:10.1186/1477-7525-11-30.CrossRefPubMedPubMedCentral Gipson, D. S., Selewski, D. T., Massengill, S. F., Wickman, L., Messer, K. L., Herreshoff, E., et al. (2013). Gaining the PROMIS perspective from children with nephrotic syndrome: A midwest pediatric nephrology consortium study. Health and Quality of Life Outcomes, 11, 30. doi:10.​1186/​1477-7525-11-30.CrossRefPubMedPubMedCentral
9.
go back to reference Hinds, P. S., Nuss, S. L., Ruccione, K. S., Withycombe, J. S., Jacobs, S., DeLuca, H., et al. (2013). PROMIS pediatric measures in pediatric oncology: Valid and clinically feasible indicators of patient-reported outcomes. Pediatric Blood & Cancer, 60(3), 402–408. doi:10.1002/pbc.24233.CrossRef Hinds, P. S., Nuss, S. L., Ruccione, K. S., Withycombe, J. S., Jacobs, S., DeLuca, H., et al. (2013). PROMIS pediatric measures in pediatric oncology: Valid and clinically feasible indicators of patient-reported outcomes. Pediatric Blood & Cancer, 60(3), 402–408. doi:10.​1002/​pbc.​24233.CrossRef
10.
11.
go back to reference Selewski, D. T., Massengill, S. F., Troost, J. P., Wickman, L., Messer, K. L., Herreshoff, E., et al. (2014). Gaining the patient reported outcomes measurement information system (PROMIS) perspective in chronic kidney disease: A midwest pediatric nephrology consortium study. Pediatric Nephrology(Berlin, Germany), 29(12), 2347–2356. doi:10.1007/s00467-014-2858-8.CrossRef Selewski, D. T., Massengill, S. F., Troost, J. P., Wickman, L., Messer, K. L., Herreshoff, E., et al. (2014). Gaining the patient reported outcomes measurement information system (PROMIS) perspective in chronic kidney disease: A midwest pediatric nephrology consortium study. Pediatric Nephrology(Berlin, Germany), 29(12), 2347–2356. doi:10.​1007/​s00467-014-2858-8.CrossRef
12.
go back to reference Menard, J. C., Hinds, P. S., Jacobs, S. S., Cranston, K., Wang, J., DeWalt, D. A., et al. (2014). Feasibility and acceptability of the PROMIS measures in children and adolescents in active cancer treatment and survivorship. Cancer Nursing, 37(1), 66–74. doi:10.1097/NCC.0b013e3182a0e23d.CrossRefPubMed Menard, J. C., Hinds, P. S., Jacobs, S. S., Cranston, K., Wang, J., DeWalt, D. A., et al. (2014). Feasibility and acceptability of the PROMIS measures in children and adolescents in active cancer treatment and survivorship. Cancer Nursing, 37(1), 66–74. doi:10.​1097/​NCC.​0b013e3182a0e23d​.CrossRefPubMed
13.
go back to reference Selewski, D. T., Troost, J. P., Massengill, S. F., Gbadegesin, R. A., Greenbaum, L. A., Shatat, I. F., et al. (2015). The impact of disease duration on quality of life in children with nephrotic syndrome: A midwest pediatric nephrology consortium study. Pediatric Nephrology(Berlin, Germany), 30(9), 1467–1476. doi:10.1007/s00467-015-3074-x.CrossRef Selewski, D. T., Troost, J. P., Massengill, S. F., Gbadegesin, R. A., Greenbaum, L. A., Shatat, I. F., et al. (2015). The impact of disease duration on quality of life in children with nephrotic syndrome: A midwest pediatric nephrology consortium study. Pediatric Nephrology(Berlin, Germany), 30(9), 1467–1476. doi:10.​1007/​s00467-015-3074-x.CrossRef
14.
go back to reference Dampier, C., Barry, V., Gross, H. E., Lui, Y., Thornburg, C. D., DeWalt, D. A., et al. (2016). Initial evaluation of the pediatric PROMIS(R) health domains in children and adolescents with sickle cell disease. Pediatric Blood & Cancer, 63(6), 1031–1037. doi:10.1002/pbc.25944.CrossRef Dampier, C., Barry, V., Gross, H. E., Lui, Y., Thornburg, C. D., DeWalt, D. A., et al. (2016). Initial evaluation of the pediatric PROMIS(R) health domains in children and adolescents with sickle cell disease. Pediatric Blood & Cancer, 63(6), 1031–1037. doi:10.​1002/​pbc.​25944.CrossRef
15.
go back to reference Dampier, C., Jaeger, B., Gross, H. E., Barry, V., Edwards, L., Lui, Y., et al. (2016). Responsiveness of PROMIS(R) pediatric measures to hospitalizations for sickle pain and subsequent recovery. Pediatric Blood & Cancer, 63(6), 1038–1045. doi:10.1002/pbc.25931.CrossRef Dampier, C., Jaeger, B., Gross, H. E., Barry, V., Edwards, L., Lui, Y., et al. (2016). Responsiveness of PROMIS(R) pediatric measures to hospitalizations for sickle pain and subsequent recovery. Pediatric Blood & Cancer, 63(6), 1038–1045. doi:10.​1002/​pbc.​25931.CrossRef
16.
18.
go back to reference Thissen, D., Liu, Y., Magnus, B., Quinn, H., Gipson, D. S., Dampier, C., et al. (2016). Estimating minimally important difference (MID) in PROMIS pediatric measures using the scale-judgment method. Quality of Life Research, 25(1), 13–23. doi:10.1007/s11136-015-1058-8.CrossRefPubMed Thissen, D., Liu, Y., Magnus, B., Quinn, H., Gipson, D. S., Dampier, C., et al. (2016). Estimating minimally important difference (MID) in PROMIS pediatric measures using the scale-judgment method. Quality of Life Research, 25(1), 13–23. doi:10.​1007/​s11136-015-1058-8.CrossRefPubMed
20.
go back to reference Bates, D., Machler, M., Bolker, B. M., & Walker, S. C. (2015). Fitting linear mixed-effects models using lme4. Journal of Statistical Software, 67(1), 1–48.CrossRef Bates, D., Machler, M., Bolker, B. M., & Walker, S. C. (2015). Fitting linear mixed-effects models using lme4. Journal of Statistical Software, 67(1), 1–48.CrossRef
24.
go back to reference Jaeger, B. (2016). r2glmm: Computes R squared for mixed (multilevel) models (LMMs and GLMMs). (R package version 0.1.0. ed.). Jaeger, B. (2016). r2glmm: Computes R squared for mixed (multilevel) models (LMMs and GLMMs). (R package version 0.1.0. ed.).
25.
go back to reference Arvanitis, M., DeWalt, D. A., Martin, C. F., Long, M. D., Chen, W., Jaeger, B., et al. (2016). Patient-reported outcomes measurement information system in children with Crohn’s disease. Journal of Pediatrics, 174(153–159), e152. doi:10.1016/j.jpeds.2016.03.069. Arvanitis, M., DeWalt, D. A., Martin, C. F., Long, M. D., Chen, W., Jaeger, B., et al. (2016). Patient-reported outcomes measurement information system in children with Crohn’s disease. Journal of Pediatrics, 174(153–159), e152. doi:10.​1016/​j.​jpeds.​2016.​03.​069.
Metagegevens
Titel
Assessing responsiveness over time of the PROMIS® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease
Auteurs
Bryce B. Reeve
Lloyd J. Edwards
Byron C. Jaeger
Pamela S. Hinds
Carlton Dampier
Debbie S. Gipson
David T. Selewski
Jonathan P. Troost
David Thissen
Vaughn Barry
Heather E. Gross
Darren A. DeWalt
Publicatiedatum
07-09-2017
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 1/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-017-1697-z

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