Servicio de Neurología, Hospital Clínic i Universitari, Barcelona, España.
Neurologia. 2012 Oct;27(8):453-71. doi: 10.1016/j.nrl.2011.05.009. Epub 2011 Sep 9.
There is evidence of insufficient communication abilities by medical specialists as well as of the limited retentive capacities of patients with Alzheimer disease (AD) and their caregivers. The main reasons for this include the personal limitations of the physician, as well as external, emotional and social-cultural factors associated with the patients and their caregivers. The aim of this study is to compare the clinical information on AD provided by the physicians and that perceived by caregivers and to assess factors associated with differences in perception.
We carried out an observational national multicentre study based on questionnaires assessing the information provided by the physician and that retained by the caregiver for 17 items of information. The study involved 61 researchers and included a total of 679 patients who met the selection criteria. We evaluated the factors associated with the difference in perception of the information that was transmitted.
Participating caregivers had a mean age of 57.2 ± 14.8 years, with an average care time of 27.6 ± 28.0 months. Approximately half (50.9%) were children of the AD patient and most lived in the same household (64.9%). Caregivers assigned significantly higher ratings to information on concept of disease, aetiology, pathogenesis, dosage and treatment recommendations and adherence, while doctors assigned significantly higher ratings to information related to demystification and correcting preconceived notions, possible complications, adverse events and/or iatrogenesis, family associations, and emotional/psychological support to caregivers (P<.05). Concordance between the information provided and that received was classified between poor and weak (inter-rater agreement ≤ 0.27). The degree of disease progression using the Global Deterioration Scale (GDS) was a factor significantly associated with professional-carer information discrepancy (P=.002).
Many areas of information showed large differences in perception between physicians and caregivers of AD patients, which highlights the need to improve the communication process in order to achieve higher quality.
有证据表明，医学专家的沟通能力不足，以及阿尔茨海默病（AD）患者及其照顾者的记忆能力有限。造成这种情况的主要原因包括医生的个人局限性，以及与患者及其照顾者相关的外部、情感和社会文化因素。本研究的目的是比较医生提供的 AD 临床信息和照顾者感知到的信息，并评估与感知差异相关的因素。
我们进行了一项基于问卷调查的观察性全国多中心研究，评估了医生提供的信息和照顾者保留的信息，共涉及 17 项信息。研究涉及 61 名研究人员，共纳入符合入选标准的 679 名患者。我们评估了与信息传递感知差异相关的因素。
参与的照顾者平均年龄为 57.2±14.8 岁，平均照顾时间为 27.6±28.0 个月。约一半（50.9%）是 AD 患者的子女，大多数与患者同住（64.9%）。照顾者对疾病概念、病因、发病机制、剂量和治疗建议以及依从性的信息评价显著较高，而医生对疾病的神秘化和纠正先入为主的观念、可能的并发症、不良事件和/或医源性、家族关联以及对照顾者的情感/心理支持的信息评价显著较高（P<.05）。提供的信息和接收的信息之间的一致性被分类为较差和较弱（组内相关系数≤0.27）。使用全球衰退量表（GDS）评估的疾病进展程度是与专业人员-照顾者信息差异显著相关的因素（P=.002）。
AD 患者的医生和照顾者之间的许多信息领域存在明显的感知差异，这突出表明需要改善沟通过程，以提高质量。
