使用日语版的KIDSCREEN-52对日本血友病儿童的自我/父母报告的生活质量进行评估。,Haemophilia

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使用日语版的KIDSCREEN-52对日本血友病儿童的自我/父母报告的生活质量进行评估。
Haemophilia ( IF 3.0 ) Pub Date : 2020-02-24 , DOI: 10.1111/hae.13945
Yasuko Furuichi _{1,

2} , Keiji Nogami ₂ , Koji Yada ₂ , Satoko Nezu ₃ , Kenji Obayashi ₃ , Keigo Saeki ₃ , Norio Kurumatani ₃ , Mitsuru Nakajima ₄ , Seiji Kinoshita ₁ , Midori Shima ₂

Affiliation

简介评估与健康相关的生活质量（HRQOL）对于为血友病患者提供全面的临床护理至关重要。具有相似文化背景的人的HRQOL应该使用国际标准化的通用问卷进行比较。目的评估患有甲型或乙型血友病的日本儿童和青少年的自我/父母评估的HRQOL。方法研究对象为8-18岁的儿童和青少年。血友病组包括有血友病的家庭，而对照组则包括没有慢性病的家庭。HRQOL使用日文版自我/父母报告的问卷KIDSCREEN-52进行评估。对奥斯陆三项社会支持量表进行了调查。结果该问卷由血友病组的36个家庭和对照组的160名父母和儿童完成。8-12岁的血友病儿童的“情绪和情绪”得分低于对照组。父母在血友病组中的“情绪和情感”，“社会支持与同伴”和“学校环境”得分低于对照组。两组年龄在13-18岁的青少年或其父母之间的HRQOL均无显着差异。颈肩痛与心理状态低下有关，包括“自我知觉”，但其他关节痛并未影响HRQOL指数的结果。社会支持弱点与身体和心理状态低下有关，而出乎意料的医院就诊发现“自我感知”，“自主性”和“学校环境”的价值较低。结论在血友病家庭中，特别是在有幼儿的家庭中，积极的心理和临床护理将为患者及其父母营造更好的环境，并减轻对血友病进展的担忧。

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Assessment of self-/parent-reported quality of life in Japanese children with haemophilia using the Japanese version of KIDSCREEN-52.

INTRODUCTION Assessing health-related quality of life (HRQOL) is critical for providing comprehensive clinical care to patients with haemophilia. HRQOL in individuals with similar cultural backgrounds should be compared using internationally standardized, generic questionnaires. AIM To evaluate self-/parent-assessed HRQOL in Japanese children and adolescents with haemophilia A or B. METHODS Children and adolescents aged 8-18 years were enrolled. The haemophilia group comprised families with haemophilia, and the control group comprised those without chronic illness. HRQOL was assessed using the self-/parent-reported questionnaire KIDSCREEN-52, the Japanese version. The Oslo 3-Item Social Support Scale was investigated. RESULTS The questionnaire was completed by 36 families in the haemophilia group and 160 parents and children in the control group. Haemophilia children aged 8-12 years had lower scores for 'moods and emotions' than control children; the parents had lower scores in the haemophilia group than in the control group for 'moods and emotions', 'social support and peers', and 'school environment'. No significant differences in HRQOL were observed between both groups of adolescents aged 13-18 years or their parents. Neck-shoulder pain was associated with a low psychological state, including 'self-perception', but other joint pains did not affect the outcomes of the HRQOL indices. Social support weaknesses were associated with low physical and psychological states, whereas unexpected hospital visits identified low values for 'self-perception', 'autonomy', and 'school environment'. CONCLUSION Proactive mental and clinical care in haemophilia families, especially with young children, will foster a better environment for patients and their parents and ease concerns about progress in haemophilia.

更新日期：2020-02-24

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