Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg and Schön Clinic Hamburg Eilbek, Hamburg, Germany.
PLoS One. 2019 Jan 31;14(1):e0209165. doi: 10.1371/journal.pone.0209165. eCollection 2019.
Providing patient information is a central aspect of patient-centered care. Fulfilling personal information needs has positive effects on several health-related outcomes. Measurement instruments help to identify individual information needs in an effective way. The present study gives an overview of existing information needs measures and further evaluates the quality of their psychometric properties and their psychometric studies.
We conducted a systematic search on psychometric studies of measures that assess information needs in PubMed and Embase. Furthermore, we carried out a secondary search with reference and citation tracking of the included articles. Title, abstracts and full texts were screened by two independent reviewers for eligibility. We extracted data on content of the measures, validation samples and psychometric properties. In addition we rated the methodological quality with the COSMIN checklist and the quality of psychometric properties with the criteria of Terwee and colleagues.
24 studies on 21 measures were included. Most instruments assessed information needs of patients with cancer or cardiac diseases. The majority of the instruments were in English language and from western countries. Most studies included information on internal consistency and content validity. The ratings showed mixed results with clear deficiencies in the methodological quality of most studies.
This is the first systematic review that summarized the existing evidence on measures on patient information needs using two instruments for a systematic quality assessment. The results show a need for more psychometric studies on existing measures. In addition, reporting on psychometric studies needs to be improved to be able to evaluate the reliability of the psychometric properties. Furthermore, we were not able to identify any measures on information needs for some frequent chronic diseases. Other methods to elicit information needs (e.g. open-ended interviews, question prompt sheets) could be considered as alternatives if sound measures are missing.
提供患者信息是患者为中心护理的一个核心方面。满足个人信息需求对许多与健康相关的结果有积极影响。测量工具有助于有效地确定个体的信息需求。本研究概述了现有的信息需求测量工具，并进一步评估了其心理测量特性的质量及其心理测量研究。
我们在 PubMed 和 Embase 上进行了系统搜索，以寻找评估信息需求的心理测量研究。此外，我们还对纳入的文章进行了参考文献和引文追踪的二次搜索。两名独立评审员对标题、摘要和全文进行了筛选，以确定是否符合入选标准。我们提取了有关测量工具内容、验证样本和心理测量特性的数据。此外，我们使用 COSMIN 清单评估方法学质量，使用 Terwee 等人的标准评估心理测量特性的质量。
纳入了 24 项研究的 21 项测量工具。大多数工具评估了癌症或心脏病患者的信息需求。大多数工具是英文的，来自西方国家。大多数研究都包含了关于内部一致性和内容效度的信息。评分结果显示出混合的结果，大多数研究的方法学质量明显存在缺陷。
这是第一项使用两种工具对患者信息需求测量工具的现有证据进行系统评价的研究。结果表明，需要对现有测量工具进行更多的心理测量研究。此外，需要改进心理测量研究的报告，以便能够评估心理测量特性的可靠性。此外，我们未能确定一些常见慢性疾病的信息需求测量工具。如果缺乏可靠的测量工具，可以考虑其他方法来获取信息需求（例如，开放式访谈、问题提示表）。
