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Purpose <p>Current survey measures of quality of life (QoL) may not be sufficient to describe domains that are important to children and youth with special healthcare needs (CYSHCN) and their families. A better understanding of current QoL surveys for CYSHCN is needed.</p> Methods <p>A scoping review of the literature was conducted utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. A comprehensive search strategy was developed and performed across multiple electronic databases (Ovid Medline, Embase, CINAHL, and Web of Science) to identify studies published between 1/1/2000 and 2/27/2023. Two independent reviewers screened abstracts for inclusion, followed by full-text reviews with discrepancies resolved by a third party when necessary. Articles included focused on the development or validation of a measure of QoL in CYSHCN. Data extraction was performed to capture key information. Surveys were obtained when able for item review.</p> Results <p>Out of an initial 11,212 abstracts screened for inclusion, a final 305 articles were included. These articles represented 47 distinct surveys of QoL. Surveys were developed in a variety of health care conditions and available in multiple languages and forms. Of the 41 surveys available for item review, 61% (n = 25/41) included a domain of physical function as a key component of QoL.</p> Conclusion <p>A scoping review of measures of QoL in CYSHCN identified a large volume of literature incorporating 47 unique surveys. However, few surveys considered CYSHCN directly in their initial development and validation, leading to concerns about the ability of these surveys to accurately assess QoL in CYSHCN.</p>

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Quality of life surveys developed or validated in children or youth with special healthcare needs: a scoping review

  • 期刊论文

  • 发表日期：

    2026年3月1日

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  • Stefanie G. Ames,
  • Margaret Comeau,
  • Christie Piper,
  • Bethlynn Vergo Houlihan,
  • Kirk Bjella,
  • Hannah Friedman,
  • Steph Lomangino,
  • Isabel K. Taylor,
  • Charlene Shelton,
  • Christopher J. Stille

摘要

Purpose

Current survey measures of quality of life (QoL) may not be sufficient to describe domains that are important to children and youth with special healthcare needs (CYSHCN) and their families. A better understanding of current QoL surveys for CYSHCN is needed.

Methods

A scoping review of the literature was conducted utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. A comprehensive search strategy was developed and performed across multiple electronic databases (Ovid Medline, Embase, CINAHL, and Web of Science) to identify studies published between 1/1/2000 and 2/27/2023. Two independent reviewers screened abstracts for inclusion, followed by full-text reviews with discrepancies resolved by a third party when necessary. Articles included focused on the development or validation of a measure of QoL in CYSHCN. Data extraction was performed to capture key information. Surveys were obtained when able for item review.

Results

Out of an initial 11,212 abstracts screened for inclusion, a final 305 articles were included. These articles represented 47 distinct surveys of QoL. Surveys were developed in a variety of health care conditions and available in multiple languages and forms. Of the 41 surveys available for item review, 61% (n = 25/41) included a domain of physical function as a key component of QoL.

Conclusion

A scoping review of measures of QoL in CYSHCN identified a large volume of literature incorporating 47 unique surveys. However, few surveys considered CYSHCN directly in their initial development and validation, leading to concerns about the ability of these surveys to accurately assess QoL in CYSHCN.