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. 2024 Apr 19;31(4):2289-2304.
doi: 10.3390/curroncol31040170.

Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL

Lye-Ann Robichaud  1   2 , Julie Felipe  1 , Michel Duval  3   4 , Bruno Michon  5 , Marianne Olivier-D'Avignon  6 , Sébastien Perreault  2   7 , Mathias Tyo-Gomez  8 , Marc-Antoine Marquis  3   9 , Serge Sultan  1   2   3
Affiliations

Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL

Lye-Ann Robichaud et al. Curr Oncol. .

Abstract

A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with advanced cancer. We adopted a four-phase research plan: (1) to elaborate the Advance QoL questionnaire for youth (8-12 and 13-18 years old) with a team of young research partners; (2) to evaluate the understandability of these versions in a sample of 12 young patients from the target population using cognitive interviews; (3) to assess social validity in the same group using a questionnaire and the content validity index (CVI); and (4) to refine the questionnaires according to these results. Four major themes were identified: (1) issues affecting the understanding of the tool; (2) issues that did not affect the understanding of the tool; (3) modifications to improve the tool; and (4) positive features of the tool. Advance QoL was well received, and feedback was positive. Adjustments were made according to young people's comments and two self-reported versions are now available. It is essential to measure the key domains of QoL in advanced cancer. Advance QoL self-report versions will help target the specific needs of young people with this condition and their families.

Keywords: advanced cancer; measure; palliative care; pediatric cancer; quality of life.

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Conflict of interest statement

The authors declare no conflicts of interest.

Figures

Figure 1
Figure 1
The development process of Advance QoL self-reported versions.
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