This study aimed to investigate agreement and discrepancies between parent proxy- and adolescent self-reports on assessments of adolescents’ health-related quality of life (HRQoL), and the role that individual factors may play in parent-adolescent agreement, in a sample of adolescents with Tourette syndrome (TS) compared to a control group of healthy adolescents. Adolescents aged 12–18 years diagnosed with TS were recruited with their parents from primary and secondary referral centres. Adolescent healthy controls were matched for gender and age. Adolescents and each of their parents completed a set of questionnaires including a HRQoL evaluation of adolescent, the ‘Vécu et Santé Perçue de l’Adolescent’. Mother-adolescent, father-adolescent and mother-father agreements on adolescents’ HRQoL scores were investigated at individual and group level, both in TS and control groups. Data were available for 75 adolescents, 75 mothers and 63 fathers, in the TS group. Agreement between mother, father proxy-reports and TS adolescents self-reports of HRQoL varied from poor to good, without significant difference with the control group. In TS group, mothers and fathers underestimated adolescents’ HRQoL in ‘Psychological well-being’ subscale and mothers underestimated it in ‘Physical ‘well-being’ subscale, while controls overestimated adolescents’ HRQoL in these subscales. Larger mother-adolescent discrepancies for ‘Psychological well-being’ and ‘Physical well-being’ subscales were associated with internalizing symptoms. Regarding future studies, comprehensive evaluation of the various dimensions of adolescents’ HRQoL with TS requires the integration of the perspectives of both adolescents, mothers and fathers. Clinicians should take into account this point to provide comprehensive care and services.

本研究旨在调查父母代理报告和青少年自我报告对青少年健康相关生活质量（HRQoL）评估的一致性和差异，以及个体因素在父母-青少年一致性中可能发挥的作用。患有抽动秽语综合症（TS）的青少年与健康青少年的对照组进行比较。被诊断患有 TS 的 12-18 岁青少年与其父母一起从初级和二级转诊中心招募。青少年健康对照者的性别和年龄相匹配。青少年及其每位家长完成了一套调查问卷，包括青少年的 HRQoL 评估，即“Vécu et Santé Perçue de l'Adolescent”。在 TS 组和对照组中，在个人和群体层面上调查了母亲-青少年、父亲-青少年和母亲-父亲对青少年 HRQoL 分数的一致性。 TS 组中有 75 名青少年、75 名母亲和 63 名父亲的数据可用。母亲、父亲代理报告和 TS 青少年自我报告的 HRQoL 之间的一致性从差到好，与对照组没有显着差异。在TS组中，母亲和父亲低估了青少年“心理健康”分量表中的HRQoL，母亲低估了“身体“幸福”分量表中的HRQoL，而对照组则高估了青少年在这些分量表中的HRQoL。母亲与青少年在“心理健康”和“身体健康”分量表上的较大差异与内化症状相关。对于未来的研究，对青少年HRQoL与TS的各个维度进行综合评估需要整合青少年、母亲和父亲双方的观点。临床医生应考虑到这一点来提供全面的护理和服务。