Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Department of Sports Medicine, University of Wuppertal, Wuppertal, Germany.
Haemophilia. 2018 Nov;24(6):888-895. doi: 10.1111/hae.13533. Epub 2018 Jul 13.
Contemporary haemophilia management recommends sport and physical activity in children with haemophilia. Assessment of subjective physical functioning requires standardized and validated instruments.
To adapt and psychometrically test the adult Haemophilia & Exercise Project-Test-Questionnaire (HEP-Test-Q) for children (aged 6-17 years).
In discussion rounds with children, single items of the adult HEP-Test-Q were reformulated to make them understandable without changing the item concept. The validation of the child-adapted version in children with haemophilia (n = 228) included pre-testing with feasibility testing, cognitive interviewing (n = 34), pilot-testing of the revised version in the EIS Study (n = 67) and field-testing in the SO-FIT Study (n = 127).
Pre-testing revealed a completion time of 8.2 ± 4.1 minutes and children liked the instrument. Cognitive interviews demonstrated that most items were easy to understand; 9 items were reformulated. Pilot-testing demonstrated good psychometric characteristics in terms of reliability (α = .94 Total Score) and validity. Convergent validity testing showed moderate correlations with the Haemo-QoL (r = -.491), but low correlations with the Petrini Score (r = -.293). Known groups' validity revealed significant differences in clinical subgroups; chronic pain (P < .002) and target joints (P < .021). Field-testing confirmed psychometric characteristics; Cronbach's alpha ranged from α = .80 ("endurance") to α = .94 (Total Score). The child-adapted HEP-Test-Q showed moderate correlations with the PedHAL (r = .634, P < .0001) and the Haemo-QoL SF (r = -.575, P < .0001). Known groups' validity testing proved that the HEP-Test-Q could discriminate between clinical subgroups.
The child-adapted HEP-Test-Q is a short, practical and acceptable instrument for the assessment of subjective physical functioning. Outcomes can be compared to adults because item concepts are identical to the adult version.
当代血友病管理建议患有血友病的儿童进行运动和体育活动。评估主观身体功能需要标准化和验证的工具。
改编并对儿童（6-17 岁）的成人血友病与运动项目测试问卷（HEP-Test-Q）进行心理测量学测试。
通过与儿童的讨论，对成人 HEP-Test-Q 的单项进行了重新制定，使其在不改变项目概念的情况下易于理解。在血友病儿童中（n=228）对儿童改编版进行验证，包括预测试可行性测试、认知访谈（n=34）、在 EIS 研究中对修订版的试点测试（n=67）和在 SO-FIT 研究中的现场测试（n=127）。
预测试显示完成时间为 8.2±4.1 分钟，儿童喜欢该仪器。认知访谈表明，大多数项目都易于理解；有 9 项需要重新制定。试点测试表明，在可靠性（总评分 α=0.94）和有效性方面具有良好的心理测量特性。收敛有效性测试显示与 Haemo-QoL（r=-0.491）中度相关，但与 Petrini 评分（r=-0.293）低度相关。已知组的有效性表明在临床亚组中存在显著差异；慢性疼痛（P<0.002）和目标关节（P<0.021）。现场测试证实了心理测量特性；Cronbach's alpha 范围从 α=0.80（耐力）到 α=0.94（总评分）。儿童改编版的 HEP-Test-Q 与 PedHAL（r=0.634，P<0.0001）和 Haemo-QoL SF（r=-0.575，P<0.0001）呈中度相关。已知组的有效性测试证明，HEP-Test-Q 可以区分临床亚组。
改编后的 HEP-Test-Q 是一种简短、实用且可接受的评估主观身体功能的工具。结果可以与成年人进行比较，因为项目概念与成人版相同。
