Skip to main content

Advertisement

SpringerLink
Log in

Health-related quality of life outcome measures for children surviving critical care: a scoping review

  • Review
  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

Health-related quality of life (HRQL) has been identified as one of the core outcomes most important to assess following pediatric critical care, yet there are no data on the use of HRQL in pediatric critical care research. We aimed to determine the HRQL instruments most commonly used to assess children surviving critical care and describe study methodology, patient populations, and instrument characteristics to identify areas of deficiency and guide investigators conducting HRQL research.

Methods

We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Registry for studies evaluating pediatric critical care survivors published 1970–2017. We used dual review for article selection and data extraction.

Results

Of 60,349 citations, 66 articles met inclusion criteria. The majority of studies were observational (89.4%) and assessed HRQL at one post-discharge time-point (86.4%), and only 10.6% of studies included a baseline assessment. Time to the first follow-up assessment ranged from 1 month to 10 years post-hospitalization (median 3 years, IQR 0.5–6). For 26 prospective studies, the median follow-up time was 0.5 years [IQR 0.25–1]. Parent/guardian proxy-reporting was used in 83.3% of studies. Fifteen HRQL instruments were employed, with four used in >5% of articles: the Health Utility Index (n = 22 articles), the Pediatric Quality of Life Inventory (n = 17), the Child Health Questionnaire (n = 16), and the 36-Item Short Form Survey (n = 9).

Conclusion

HRQL assessment in pediatric critical care research has been centered around four instruments, though existing literature is limited by minimal longitudinal follow-up and infrequent assessment of baseline HRQL.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Data availability

Not applicable.

Code availability

Not applicable.

References

  1. Burns, J. P., Sellers, D. E., Meyer, E. C., Lewis-Newby, M., & Truog, R. D. (2014). Epidemiology of death in the PICU at five U.S. teaching hospitals*. Critical Care Medicine, 42(9), 2101–2108. doi:https://doi.org/10.1097/CCM.0000000000000498

  2. Pinto, N. P., Rhinesmith, E. W., Kim, T. Y., Ladner, P. H., & Pollack, M. M. (2017). Long-term function after pediatric critical illness: Results from the survivor outcomes study. Pediatric Critical Care Medicine, 18(3), e122–e130. https://doi.org/10.1097/pcc.0000000000001070

    Article  PubMed  Google Scholar 

  3. Manning, J. C., Pinto, N. P., Rennick, J. E., Colville, G., & Curley, M. A. Q. (2018). Conceptualizing post intensive care syndrome in children-the PICS-p framework. Pediatric Critical Care Medicine, 19(4), 298–300. https://doi.org/10.1097/pcc.0000000000001476

    Article  PubMed  Google Scholar 

  4. Rennick, J. E., & Childerhose, J. E. (2015). Redefining success in the PICU: New patient populations shift targets of care. Pediatrics, 135(2), e289-291. https://doi.org/10.1542/peds.2014-2174

    Article  PubMed  Google Scholar 

  5. Graham, R. J. (2005). An opportunity: Critical care beyond the intensive care unit. Pediatric Critical Care Medicine, 6(3), 327–328.

    Article  Google Scholar 

  6. Maddux, A. B., Pinto, N., Fink, E. L., Hartman, M. E., Nett, S., Biagas, K., et al. (2020). Postdischarge outcome domains in pediatric critical care and the instruments used to evaluate them: A scoping review. Critical Care Medicine, 48(12), e1313–e1321. https://doi.org/10.1097/CCM.0000000000004595

    Article  PubMed  Google Scholar 

  7. Fink, E. L., Jarvis, J. M., Maddux, A. B., Pinto, N., Galyean, P., Olson, L. M., et al. (2020). Development of a core outcome set for pediatric critical care outcomes research. Contemporary Clinical Trials, 91, 105968. https://doi.org/10.1016/j.cct.2020.105968

    Article  PubMed  PubMed Central  Google Scholar 

  8. Fink, E. L., Maddux, A. B., Pinto, N., Sorenson, S., Notterman, D., Dean, J. M., et al. (2020). A core outcome set for pediatric critical care. Critical Care Medicine. https://doi.org/10.1097/ccm.0000000000004660

    Article  PubMed  Google Scholar 

  9. Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381. https://doi.org/10.1016/j.jbi.2008.08.010

    Article  PubMed  Google Scholar 

  10. Iwashyna, T. J., & Netzer, G. (2012). The burdens of survivorship: An approach to thinking about long-term outcomes after critical illness. Seminars in Respiratory and Critical Care Medicine, 33(4), 327–338. https://doi.org/10.1055/s-0032-1321982

    Article  PubMed  Google Scholar 

  11. Feeny, D., Furlong, W., Boyle, M., & Torrance, G. W. (1995). Multi-attribute health status classification systems Health Utilities Index. Pharmacoeconomics, 7(6), 490–502. https://doi.org/10.2165/00019053-199507060-00004

    Article  CAS  PubMed  Google Scholar 

  12. Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.

    Article  CAS  Google Scholar 

  13. Landgraf, J. M., Maunsell, E., Speechley, K. N., Bullinger, M., Campbell, S., Abetz, L., et al. (1998). Canadian-French, German and UK versions of the Child Health Questionnaire: Methodology and preliminary item scaling results. Quality of Life Research, 7(5), 433–445. https://doi.org/10.1023/a:1008810004694

    Article  CAS  PubMed  Google Scholar 

  14. Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.

    Article  Google Scholar 

  15. Vogels, T., Verrips, G. H., Verloove-Vanhorick, S. P., Fekkes, M., Kamphuis, R. P., Koopman, H. M., et al. (1998). Measuring health-related quality of life in children: The development of the TACQOL parent form. Quality of Life Research, 7(5), 457–465. https://doi.org/10.1023/a:1008848218806

    Article  CAS  PubMed  Google Scholar 

  16. Achenbach, T. M. (2001). Manual for the ASEBA school-age forms and profiles. University of Vermont Research Center for Children, Youth, and Families.

    Google Scholar 

  17. Anderson, J. P., Kaplan, R. M., Berry, C. C., Bush, J. W., & Rumbaut, R. G. (1989). Interday reliability of function assessment for a health status measure. The quality of well-being scale. Medical Care, 27(11), 1076–1083. https://doi.org/10.1097/00005650-198911000-00008

    Article  CAS  PubMed  Google Scholar 

  18. Coster, W., Bedell, G., Law, M., Khetani, M. A., Teplicky, R., Liljenquist, K., et al. (2011). Psychometric evaluation of the participation and environment measure for children and youth. Developmental Medicine and Child Neurology, 53(11), 1030–1037. https://doi.org/10.1111/j.1469-8749.2011.04094.x

    Article  PubMed  Google Scholar 

  19. McKenna, S. P., Doward, L. C., Alonso, J., Kohlmann, T., Niero, M., Prieto, L., et al. (1999). The QoL-AGHDA: An instrument for the assessment of quality of life in adults with growth hormone deficiency. Quality of Life Research, 8(4), 373–383. https://doi.org/10.1023/a:1008987922774

    Article  CAS  PubMed  Google Scholar 

  20. Gemke, R. J., & Bonsel, G. J. (1996). Reliability and validity of a comprehensive health status measure in a heterogeneous population of children admitted to intensive care. Journal of Clinical Epidemiology, 49(3), 327–333. https://doi.org/10.1016/0895-4356(95)00528-5

    Article  CAS  PubMed  Google Scholar 

  21. Aspesberro, F., Fesinmeyer, M. D., Zhou, C., Zimmerman, J. J., & Mangione-Smith, R. (2016). Construct validity and responsiveness of the pediatric quality of life inventory 4.0 generic core scales and infant scales in the PICU. Pediatric Critical Care Medicine, 17(6), e272–e279. https://doi.org/10.1097/PCC.0000000000000727

    Article  PubMed  Google Scholar 

  22. Merritt, C., Menon, K., Agus, M. S. D., Choong, K., McNally, D., O’Hearn, K., et al. (2018). Beyond survival: Pediatric critical care interventional trial outcome measure preferences of families and healthcare professionals. Pediatric Critical Care Medicine, 19(2), e105–e111. https://doi.org/10.1097/pcc.0000000000001409

    Article  PubMed  Google Scholar 

  23. Spronk, I., Legemate, C. M., Polinder, S., & van Baar, M. E. (2018). Health-related quality of life in children after burn injuries: A systematic review. Journal of Trauma and Acute Care Surgery, 85(6), 1110–1118. https://doi.org/10.1097/ta.0000000000002072

    Article  Google Scholar 

  24. Zimmerman, J. J., Banks, R., Berg, R. A., Zuppa, A., Newth, C. J., Wessel, D., et al. (2020). Trajectory of mortality and health-related quality of life morbidity following community-acquired pediatric septic shock. Critical Care Medicine, 48(3), 329–337. https://doi.org/10.1097/CCM.0000000000004123

    Article  PubMed  Google Scholar 

  25. Killien, E. Y., Watson, R. S., & Zimmerman, J. J. (2018). Inherent value of baseline measures when assessing the trajectory of health-related quality of life among children surviving critical illness. Intensive Care Medicine, 44(11), 1979–1981. https://doi.org/10.1007/s00134-018-5388-1

    Article  PubMed  PubMed Central  Google Scholar 

  26. Killien, E. Y., Farris, R. W. D., Watson, R. S., Dervan, L. A., & Zimmerman, J. J. (2019). Health-related quality of life among survivors of pediatric sepsis. Pediatric Critical Care Medicine, 20(6), 501–509. https://doi.org/10.1097/PCC.0000000000001886

    Article  PubMed  PubMed Central  Google Scholar 

  27. Edwards, J. D., Houtrow, A. J., Vasilevskis, E. E., Rehm, R. S., Markovitz, B. P., Graham, R. J., et al. (2012). Chronic conditions among children admitted to U.S. pediatric intensive care units: Their prevalence and impact on risk for mortality and prolonged length of stay*. Critical Care Medicine, 40(7), 2196–2203. doi:https://doi.org/10.1097/CCM.0b013e31824e68cf.

  28. Kyosti, E., Ala-Kokko, T. I., Ohtonen, P., Peltoniemi, O., Rautiainen, P., Kataja, J., et al. (2018). Factors associated with health-related quality of life 6 years after ICU discharge in a Finnish paediatric population: A cohort study. Intensive Care Medicine, 44(9), 1378–1387. https://doi.org/10.1007/s00134-018-5296-4

    Article  PubMed  Google Scholar 

  29. Watson, R. S., Asaro, L. A., Hertzog, J. H., Sorce, L. R., Kachmar, A. G., Dervan, L. A., et al. (2018). Long-term outcomes after protocolized sedation versus usual care in ventilated pediatric patients. American Journal of Respiratory and Critical Care Medicine, 197(11), 1457–1467. https://doi.org/10.1164/rccm.201708-1768OC

    Article  PubMed  PubMed Central  Google Scholar 

  30. Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes, 5, 43. https://doi.org/10.1186/1477-7525-5-43

    Article  PubMed  PubMed Central  Google Scholar 

  31. Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics: The Official Journal of the Ambulatory Pediatrics Association, 3(6), 329–341.

    Article  Google Scholar 

  32. Graham, R. J., Rodday, A. M., & Parsons, S. K. (2014). Family centered assessment and function for children with chronic mechanical respiratory support. Journal of Pediatric Health Care, 28(4), 295–304.

    Article  Google Scholar 

  33. Rodday, A. M., Graham, R. J., Weidner, R. A., Terrin, N., Leslie, L. K., & Parsons, S. K. (2017). Predicting health care utilization for children with respiratory insufficiency using parent-proxy ratings of children’s health-related quality of life. Journal of Pediatric Health Care, 31(6), 654–662. https://doi.org/10.1016/j.pedhc.2017.04.021

    Article  PubMed  PubMed Central  Google Scholar 

  34. Riley, W. T., Rothrock, N., Bruce, B., Christodolou, C., Cook, K., Hahn, E. A., et al. (2010). Patient-reported outcomes measurement information system (PROMIS) domain names and definitions revisions: Further evaluation of content validity in IRT-derived item banks. Quality of Life Research, 19(9), 1311–1321. https://doi.org/10.1007/s11136-010-9694-5

    Article  PubMed  PubMed Central  Google Scholar 

  35. Parsons, S. K., Shih, M. C., Mayer, D. K., Barlow, S. E., Supran, S. E., Levy, S. L., et al. (2005). Preliminary psychometric evaluation of the Child Health Ratings Inventory (CHRIs) and Disease-Specific Impairment Inventory-Hematopoietic Stem Cell Transplantation (DSII-HSCT) in parents and children. Quality of Life Research, 14(6), 1613–1625. https://doi.org/10.1007/s11136-005-1004-2

    Article  CAS  PubMed  Google Scholar 

  36. Sintonen, H. (1994). The 15D-measure of health-related quality of life: Reliability, validity, and sensitivity of its health state descriptive system. National Centre for Health Program Evaluation.

    Google Scholar 

  37. Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., et al. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research, 5(3), 353–364. https://doi.org/10.1586/14737167.5.3.353

    Article  Google Scholar 

  38. Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: First psychometric and content analytical results. Quality of Life Research, 7(5), 399–407. https://doi.org/10.1023/a:1008853819715

    Article  CAS  PubMed  Google Scholar 

  39. Mok, M. M., & Flynn, M. (2002). Establishing longitudinal factorial construct validity of the quality of school life scale for secondary students. Journal of Applied Measurement, 3(4), 400–420.

    PubMed  Google Scholar 

Download references

Acknowledgements

We would like to acknowledge the outstanding work of our additional library scientists including Tisha Mentnech at North Carolina University, Mary McFarland at the University of Utah, Carolyn Biglow at the University of Pittsburgh Medical Center, and Richard James at the University of Pennsylvania and the support of Martha A.Q. Curley, PhD, RN, FAAN at the University of Pennsylvania for the methodological advising and library scientist support. We acknowledge Daniel Notterman, MD (Princeton University); J. Michael Dean, MD (University of Utah); Joseph A Carcillo, MD (UPMC Children’s Hospital of Pittsburgh);Robert A Berg, MD (Children’s Hospital of Philadelphia); Athena Zuppa, MD (Children’s Hospital of Philadelphia); Murray M Pollack, MD (Children’s National Hospital); Kathleen L Meert, MD (Children’s Hospital of Michigan,); Mark W Hall, MD (Nationwide Children’s Hospital); Anil Sapru, MD (Mattel Children’s Hospital, University of California Los Angeles); Patrick S McQuillen, MD (Benioff Children’s Hospital, University of California); Peter M Mourani, MD (Children’s Hospital Colorado, University of Colorado); David Wessel, MD (Children’s National Hospital); Samuel Sorenson, BS (University of Utah); Lenora Olson, PhD (University of Utah) of the PICU-COS Investigators of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Network and Tammara L. Jenkins, MSN, RN,PCNS-BC, FCCM (Program Officer, Pediatric Trauma and Critical Illness Branch) and Robert Tamburro, MD, MSc (Medical Officer, Pediatric Trauma and Critical Illness Branch) from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Funding

Supported in part by NICHD K23HD096018 (Maddux) and the Francis Family Foundation (Maddux). Additional funding was provided by the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. It was approved by the CPCCRN Steering Committee and funded by UG1-HD049983 (Fink) and U01-HD049934 (Dean).

Author information

Authors and Affiliations

  1. Pediatric Critical Care Medicine, Department of Pediatrics, University of Washington School of Medicine, Seattle Children’s Hospital, FA 2.112, 4800 Sand Point Way NE, Seattle, WA, 98105, USA

    Elizabeth Y. Killien, Jonna D. Clark, Jerry J. Zimmerman & R. Scott Watson

  2. Pediatric Critical Care Medicine, Department of Pediatrics, Baylor College of Medicine, Texas Children’s Hospital, Houston, TX, USA

    Laura L. Loftis & Brian J. Rissmiller

  3. Pediatric Critical Care Medicine, Department of Pediatrics, Nationwide Children’s Hospital, Columbus, OH, USA

    Jennifer A. Muszynski

  4. Pediatric Critical Care, Children’s Hospital At Dartmouth, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA

    Marcy N. Singleton

  5. Pediatric Critical Care Medicine, Penn State University College of Medicine, Hershey, PA, USA

    Benjamin R. White

  6. Critical Care Medicine, Department of Pediatrics, University of Colorado School of Medicine, Children’s Hospital Colorado, Aurora, CO, USA

    Aline B. Maddux

  7. Critical Care Medicine, Department of Anesthesiology and Critical Medicine, Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Neethi P. Pinto

  8. Department of Critical Care Medicine, University of Pittsburgh Medical Center, Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA

    Ericka L. Fink

  9. Critical Care Medicine, Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA

    McKenna Smith & Melissa Ringwood

  10. Division of Critical Care Medicine, Department of Anesthesia, Critical Care and Pain Medicine, Boston Children’s Hospital, Boston, MA, USA

    Robert J. Graham

Authors
  1. Elizabeth Y. Killien
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Laura L. Loftis
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jonna D. Clark
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jennifer A. Muszynski
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Brian J. Rissmiller
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Marcy N. Singleton
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Benjamin R. White
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Jerry J. Zimmerman
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Aline B. Maddux
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Neethi P. Pinto
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Ericka L. Fink
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. R. Scott Watson
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. McKenna Smith
    View author publications

    You can also search for this author in PubMed Google Scholar

  14. Melissa Ringwood
    View author publications

    You can also search for this author in PubMed Google Scholar

  15. Robert J. Graham
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

for the POST-PICU and PICU-COS Investigators of the Pediatric Acute Lung Injury and Sepsis Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Networks

Corresponding author

Correspondence to Elizabeth Y. Killien.

Ethics declarations

Conflict of interest

The authors have no relevant financial or non-financial conflicts of interest to disclose.

Ethical approval

Institutional Review Board approval was not required as the study did not include human subjects.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

11136_2021_2928_MOESM1_ESM.pdf

Supplementary file1—Online Resource 1: Pediatric Acute Lung Injury and Sepsis Investigators (PALISI) POST-PICU Scoping Review Investigators (PDF 116 kb)

Supplementary file2—Online Resource 2: Search strategy (PDF 85 kb)

11136_2021_2928_MOESM3_ESM.pdf

Supplementary file3—Online Resource 3: Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist (PDF 108 kb)

11136_2021_2928_MOESM4_ESM.pdf

Supplementary file4—Online Resource 4: Identification of eligible health-related quality of life (HRQL) articles (PDF 31 kb)

11136_2021_2928_MOESM5_ESM.pdf

Supplementary file5—Online Resource 5: Characteristics of health-related quality of life articles included, listed by year of publication (PDF 239 kb)

Supplementary file6—Online Resouce 6: Articles excluded after full-text review (CSV 73 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Killien, E.Y., Loftis, L.L., Clark, J.D. et al. Health-related quality of life outcome measures for children surviving critical care: a scoping review. Qual Life Res 30, 3383–3394 (2021). https://doi.org/10.1007/s11136-021-02928-9

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-021-02928-9

Keywords

Search

Navigation