Lock J, Raat H, Peters M, Tamminga R Y J, Leebeek F W G, Moll H A, Cnossen M H
Department of Paediatric Haematology, Erasmus MC - Sophia Children's Hospital, Rotterdam, The Netherlands.
Haemophilia. 2014 Jul;20(4):e267-74. doi: 10.1111/hae.12435. Epub 2014 Apr 11.
Higher self-efficacy in chronic disease patients is associated with higher development of self-management skills and increased quality-of-life. Quantification and monitoring of self-efficacy is therefore of importance. Self-efficacy in haemophilia patients has received little attention due to lack of standardized scales. To validate the novel Haemophilia-specific Self-Efficacy Scale (HSES) in haemophilia patients on prophylactic home treatment, haemophilia patients aged 1-18 years on prophylactic treatment ≥1 year were included from three Dutch Haemophilia Treatment Centres. The HSES consists of 12 items, relating to perceptions of the ability to function on a day-to-day basis with regard to patient's disease. Retest was performed in a subsample. Validity was proven by the General Self-Efficacy Scale and by the health-related quality-of-life assessment tool Haemo-QoL. Data were analysed from 53 children (response 75%), with a mean age of 9.8 years (SD 4.0). Mean total scale score of HSES was 55.5 (SD 4.7; range 38-60), with a ceiling effect of 17%. The HSES showed adequate internal consistency (Cronbach's alpha 0.72) and good test-retest reliability (Intra-Class-Correlation coefficient 0.75; P < 0.01; n = 37). The convergent validity was adequate as haemophilia-specific self-efficacy correlated significantly with general self-efficacy (r = 0.38; P < 0.01). High HSES scores correlated significantly with quality-of-life as measured by the Haemo-QoL (r = -0.42; P ≤ 0.01). The novel HSES is a reliable and valid tool to assess self-efficacy in paediatric haemophilia patients on prophylactic home treatment. High self-efficacy correlated with higher quality-of-life, further underlining the importance to standardly assess, monitor and improve self-efficacy.
慢性病患者较高的自我效能感与自我管理技能的更高发展以及生活质量的提高相关。因此,自我效能感的量化和监测很重要。由于缺乏标准化量表,血友病患者的自我效能感很少受到关注。为了验证新型血友病特异性自我效能量表(HSES)在接受预防性家庭治疗的血友病患者中的有效性,从荷兰三个血友病治疗中心纳入了年龄在1至18岁、接受预防性治疗≥1年的血友病患者。HSES由12个项目组成,涉及患者对日常疾病功能能力的认知。对一个子样本进行了重测。通过一般自我效能量表和与健康相关的生活质量评估工具Haemo-QoL验证了有效性。对53名儿童(应答率75%)的数据进行了分析,平均年龄为9.8岁(标准差4.0)。HSES的平均总分是55.5(标准差4.7;范围38 - 60),天花板效应为17%。HSES显示出足够的内部一致性(克朗巴哈系数0.72)和良好的重测信度(组内相关系数0.75;P < 0.01;n = 37)。收敛效度足够,因为血友病特异性自我效能感与一般自我效能感显著相关(r = 0.38;P < 0.01)。高HSES得分与Haemo-QoL测量的生活质量显著相关(r = -0.42;P ≤ 0.01)。新型HSES是评估接受预防性家庭治疗的儿科血友病患者自我效能感的可靠且有效的工具。高自我效能感与更高的生活质量相关,进一步强调了标准化评估、监测和提高自我效能感的重要性。