Centre for Infectious Disease Prevention, National Institute of Public Health and the Environment (RIVM), Bilthoven, The Netherlands.
Interdisciplinary Social Science, Utrecht University, Utrecht, The Netherlands.
Qual Life Res. 2019 Oct;28(10):2685-2694. doi: 10.1007/s11136-019-02203-y. Epub 2019 May 16.
We selected and evaluated a comprehensive set of themes that encompass health-related quality of life (HRQOL) among HIV patients, which enables clinicians to tailor care to individual needs, follow changes over time and quantify returns on health care investments and interventions.
HIV patients (N = 250) of two Dutch HIV clinics were invited to complete an online survey comprised of a set of (adaptations of) validated questionnaires measuring eight themes, including general health (SF-12), stigma (short stigma scale), social support (SSL12-I), self-esteem (SISE), sexuality problems, anxiety and depression (HADS), sleeping difficulties (SCL90-Sleep) and perceived side-effects.
Findings from 170 (response rate 68%) patients (Male = 159, 94.1%) showed that questionnaires had high internal consistency, and most themes significantly correlated (r's .21 to - .69, p < .05) in the expected directions. Exploring cut-off scores shows that a significant proportion of patients score outside of the desired range on single themes (between 16.0 and 73.1%), and many patients on multiple themes simultaneously (8.9% on 5 or more themes). Regression analysis showed that social support, self-esteem and sexuality problems were associated with general health (R = .48, R = .23, F(4,145) = 10.57, p < .001); adding anxiety and depression, sleeping difficulties and perceived side-effects explained 51.2% of the variance in total (R = .72, ∆R = .29, F(3, 142) = 27.82, p < .001).
We succeeded in developing a questionnaire that comprehensively assesses HRQOL. HRQOL of the majority of Dutch HIV patients could be improved. The themes strongly influenced each other, therefore insights into any of the themes could inform interventions to improve HRQOL, and increase attention to these themes in routine consultations between patients and health care professionals.
我们选择并评估了一套全面的主题,涵盖了 HIV 患者的健康相关生活质量(HRQOL),使临床医生能够根据个体需求调整护理,跟踪随时间的变化,并量化医疗保健投资和干预措施的回报。
我们邀请了两家荷兰 HIV 诊所的 250 名 HIV 患者完成了一项在线调查,该调查由一套(改编自)经过验证的问卷组成,用于测量八个主题,包括一般健康状况(SF-12)、耻辱感(简短耻辱量表)、社会支持(SSL12-I)、自尊(SISE)、性问题、焦虑和抑郁(HADS)、睡眠困难(SCL90-Sleep)和感知副作用。
对 170 名(应答率为 68%)患者(男性=159,94.1%)的调查结果表明,问卷具有较高的内部一致性,并且大多数主题以预期的方向显著相关(r 值为.21 至- .69,p < .05)。探索临界值得分表明,相当一部分患者在单个主题上的得分超出了预期范围(在 16.0 到 73.1%之间),并且许多患者在多个主题上同时得分(8.9%的患者有 5 个或更多主题)。回归分析表明,社会支持、自尊和性问题与一般健康状况相关(R = .48,R = .23,F(4,145)=10.57,p < .001);加入焦虑和抑郁、睡眠困难和感知副作用后,总共解释了 51.2%的方差(R = .72,∆R = .29,F(3,142)=27.82,p < .001)。
我们成功地开发了一套全面评估 HRQOL 的问卷。大多数荷兰 HIV 患者的 HRQOL 可以得到改善。这些主题之间相互影响强烈,因此对任何主题的了解都可以为改善 HRQOL 的干预措施提供信息,并在患者和医疗保健专业人员之间的常规咨询中增加对这些主题的关注。