Measuring Health-Related Quality of Life in Pediatric Neurology

doi:10.1177/0883073820923809

Review

. 2020 Sep;35(10):681-689.

doi: 10.1177/0883073820923809. Epub 2020 Jun 4.

Measuring Health-Related Quality of Life in Pediatric Neurology

Monica E Lemmon^{1

2

3}, Hanna E Huffstetler², Bryce B Reeve^{1

3

4}

Affiliations

¹ Department of Pediatrics, Duke University Medical Center, Durham, NC, USA.
² Margolis Center for Health Policy, Duke University, Durham, NC, USA.
³ Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
⁴ Center for Health Measurement, Duke University School of Medicine, Durham, NC, USA.

PMID: 32498657
PMCID: PMC7415579
DOI: 10.1177/0883073820923809

Review

Measuring Health-Related Quality of Life in Pediatric Neurology

Monica E Lemmon et al. J Child Neurol. 2020 Sep.

. 2020 Sep;35(10):681-689.

doi: 10.1177/0883073820923809. Epub 2020 Jun 4.

Authors

Monica E Lemmon^{1

2

3}, Hanna E Huffstetler², Bryce B Reeve^{1

3

4}

Affiliations

¹ Department of Pediatrics, Duke University Medical Center, Durham, NC, USA.
² Margolis Center for Health Policy, Duke University, Durham, NC, USA.
³ Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
⁴ Center for Health Measurement, Duke University School of Medicine, Durham, NC, USA.

PMID: 32498657
PMCID: PMC7415579
DOI: 10.1177/0883073820923809

Abstract

Health-related quality of life (HRQOL) is central to how clinicians and parents make choices about medical care for pediatric neurology patients. To provide parents with the information they need to make these decisions and plan for the future, it is necessary for parents and clinicians to understand how HRQOL is defined and measured in the setting of pediatric neurodevelopmental impairment. We review challenges that exist in measuring HRQOL in pediatric neurology, examine existing measures, and outline key principles to guide selection and interpretation of HRQOL measures in children with neurologic conditions.

Keywords: health-related quality of life; neurology; pediatrics.

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Conflict of interest statement

Declaration of conflicting interests: The authors have no conflicts of interest to disclose.

Figures

**Figure 1.**
Considerations and guiding questions for choosing HRQOL instruments

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References

1. Cella DF, Wiklund I, Shumaker SA, Aaronson NK. Integrating health-related quality of life into cross-national clinical trials. Qual Life Res. 1993;2(6):433–440. - PubMed
1. Saigal S, Stoskopf B, Pinelli J, et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood. Pediatrics. 2006;118(3):1140–1148. - PubMed
1. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48(8):977–988. - PubMed
1. Starr TJ, Pearlman RA, Uhlmann RF. Quality of life and resuscitation decisions in elderly patients. J Gen Intern Med. 1986;1(6):373–379. - PubMed
1. Uhlmann RF, Pearlman RA. Perceived quality of life and preferences for life-sustaining treatment in older adults. Arch Intern Med. 1991;151(3):495–497. - PubMed

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[1] Cella DF, Wiklund I, Shumaker SA, Aaronson NK. Integrating health-related quality of life into cross-national clinical trials. Qual Life Res. 1993;2(6):433–440. - PubMed

[2] Cella DF, Wiklund I, Shumaker SA, Aaronson NK. Integrating health-related quality of life into cross-national clinical trials. Qual Life Res. 1993;2(6):433–440. - PubMed

[3] Saigal S, Stoskopf B, Pinelli J, et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood. Pediatrics. 2006;118(3):1140–1148. - PubMed

[4] Saigal S, Stoskopf B, Pinelli J, et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood. Pediatrics. 2006;118(3):1140–1148. - PubMed

[5] Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48(8):977–988. - PubMed

[6] Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48(8):977–988. - PubMed

[7] Starr TJ, Pearlman RA, Uhlmann RF. Quality of life and resuscitation decisions in elderly patients. J Gen Intern Med. 1986;1(6):373–379. - PubMed

[8] Starr TJ, Pearlman RA, Uhlmann RF. Quality of life and resuscitation decisions in elderly patients. J Gen Intern Med. 1986;1(6):373–379. - PubMed

[9] Uhlmann RF, Pearlman RA. Perceived quality of life and preferences for life-sustaining treatment in older adults. Arch Intern Med. 1991;151(3):495–497. - PubMed

[10] Uhlmann RF, Pearlman RA. Perceived quality of life and preferences for life-sustaining treatment in older adults. Arch Intern Med. 1991;151(3):495–497. - PubMed

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Measuring Health-Related Quality of Life in Pediatric Neurology

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Measuring Health-Related Quality of Life in Pediatric Neurology

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Conflict of interest statement

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