French-language adaptation of the 16D and 17D Quality of Life measures and score description in two Canadian pediatric samples

Abstract

Purpose: The Health state descriptive system includes standardized self-administered instruments for measuring Health-Related Quality of Life (HRQoL) respectively among adolescents, and children. The objectives of the current study were: (1) to translate and adapt the pediatric-adolescent version 16D and 17D from English into French (Canada), (2) to demonstrate their feasibility in pediatric conditions.

Methods: The translation methodology combined forward and back translations, and cognitive debriefing with eight adolescents and eight children. Four bilingual translators were involved in the process. We administered the translated versions to two clinical samples, being treated for Primary immunodeficiency (PID, n = 48, aged 14.1 years, 20 girls), and having recovered from pediatric Acute Lymphoblastic Leukemia (ALL, n = 153, aged 14.7 years, 77 girls).

Results: Cognitive debriefing indicated that that the instructions, items, and response options were clear, easy to understand, and easy to answer. Adjustments were made for clarity. Translated versions were highly usable (measurement completion >90%). HRQoL levels were high for both samples (range 0.85-0.96). Participants reported lower levels if they were adolescents, particularly if they were girls. Older boys with PID reported a lower HRQoL than their counterparts with a history of ALL. PID and ALL patients mainly reported issues with discomfort and pain, concentration/learning, physical appearance, and psychological distress and sleeping, although to a different degree.

Conclusion: The French-language versions of the 16D and 17D are easy to administer and may be used to identify problematic domains. Greater availability of translated versions of short evaluation tools may facilitate broader uptake of screening practices in pediatric care.

Keywords: Childhood leukemia; Quality of Life; health status; pediatrics; primary immunodeficiency.

Figure 1

. Frequencies of participants’ responses for 16D (panels A-B), and 17D (panels C-D) individual items and options in 2 groups with Primary Immunodeficiency (PID) (n = 48) and survivors of Acute Lymphoblastic Leukemia (ALL) (n = 153). Note. Panel A Frequencies for 16D individual items for ALL. Panel B Frequencies for 16D individual items for PID. Panel C Frequencies for 17D individual items for ALL. Panel D Frequencies for 17D individual items for PID. Levels 1 to 5 refer to levels of impairment of function. Level 1: no impairment, Level 5: severe impairment. Frequency tables of individual responses to each item are available in supplementary material to this article.