Stienen Jozette Jc, Ottevanger Petronella B, Wennekes Lianne, Dekker Helena M, van der Maazen Richard Wm, Mandigers Caroline Mpw, van Krieken Johan Hjm, Blijlevens Nicole Ma, Hermens Rosella Pmg
Radboud university medical center, Scientific Institute for Quality of Healthcare (IQ healthcare), Nijmegen, Netherlands.
JMIR Res Protoc. 2015 Jan 9;4(1):e6. doi: 10.2196/resprot.3407.
An overload of health-related information is available for patients on numerous websites, guidelines, and information leaflets. However, the increasing need for personalized health-related information is currently unmet.
This study evaluates an educational e-tool for patients with non-Hodgkin's lymphoma (NHL) designed to meet patient needs with respect to personalized and complete health-related information provision. The e-tool aims to help NHL patients manage and understand their personal care pathway, by providing them with insight into their own care pathway, the possibility to keep a diary, and structured health-related information.
Together with a multidisciplinary NHL expert panel, we developed an e-tool consisting of two sections: (1) a personal section for patients' own care pathway and their experiences, and (2) an informative section including information on NHL. We developed an ideal NHL care pathway based on the available (inter)national guidelines. The ideal care pathway, including date of first consultation, diagnosis, and therapy start, was used to set up the personal care pathway. The informative section was developed in collaboration with the patient association, Hematon. Regarding participants, 14 patients and 6 laymen were asked to evaluate the e-tool. The 24-item questionnaire used discussed issues concerning layout (6 questions), user convenience (3 questions), menu clarity (3 questions), information clarity (5 questions), and general impression (7 questions). In addition, the panel members were asked to give their feedback by email.
A comprehensive overview of diagnostics, treatments, and aftercare can be established by patients completing the questions from the personal section. The informative section consisted of NHL information regarding NHL in general, diagnostics, therapy, aftercare, and waiting times. Regarding participants, 6 patients and 6 laymen completed the questionnaire. Overall, the feedback was positive, with at least 75% satisfaction on each feedback item. Important strengths mentioned were the use of a low health-literacy level, the opportunity to document the personal care pathway and experiences, and the clear overview of the information provided. The added value of the e-tool in general was pointed out as very useful for preparing the consultation with one's doctor and for providing all information on one website, including the opportunity for a personalized care pathway and diary. The majority of the revisions concerned wording and clarity. In addition, more explicit information on immunotherapy, experimental therapy, and psychosocial support was added.
We have developed a personal care management e-tool for NHL patients. This tool contains a unique way to help patients manage their personal care pathway and give them insight into their NHL by providing health-related information and a personal diary. This evaluation showed that our e-tool meets patients' needs concerning personalized health-related information, which might serve as a good example for other oncologic diseases. Future research should focus on the possible impact of the e-tool on doctor-patient communication during consultations.
众多网站、指南和信息手册为患者提供了大量与健康相关的信息。然而，目前对个性化健康相关信息日益增长的需求尚未得到满足。
本研究评估一种针对非霍奇金淋巴瘤（NHL）患者的教育电子工具，该工具旨在满足患者对个性化和完整健康相关信息的需求。该电子工具旨在通过为NHL患者提供对自身护理路径的洞察、记日记的可能性以及结构化的健康相关信息，帮助他们管理和理解个人护理路径。
我们与一个多学科NHL专家小组共同开发了一个电子工具，该工具由两个部分组成：（1）一个个人部分，用于记录患者自己的护理路径和经历；（2）一个信息部分，包括有关NHL的信息。我们根据现有的（国际）指南制定了理想的NHL护理路径。理想的护理路径，包括首次咨询日期、诊断和治疗开始日期，用于建立个人护理路径。信息部分是与患者协会Hematon合作开发的。关于参与者，我们邀请了14名患者和6名外行来评估该电子工具。所使用的24项问卷讨论了有关布局（6个问题）、用户便利性（3个问题）、菜单清晰度（3个问题）、信息清晰度（5个问题）和总体印象（7个问题）等问题。此外，还要求小组成员通过电子邮件提供反馈。
患者通过完成个人部分的问题，可以建立起诊断、治疗和后续护理的全面概述。信息部分包括关于NHL的一般信息、诊断、治疗、后续护理和等待时间等方面的内容。关于参与者，6名患者和6名外行完成了问卷。总体而言，反馈是积极的，每个反馈项目的满意度至少为75%。提到的重要优点包括使用低健康素养水平的表述、记录个人护理路径和经历的机会以及所提供信息的清晰概述。该电子工具的总体附加值被指出对与医生的咨询准备以及在一个网站上提供所有信息非常有用，包括提供个性化护理路径和日记的机会。大多数修订涉及措辞和清晰度。此外，还增加了关于免疫疗法、实验性疗法和心理社会支持的更明确信息。
我们为NHL患者开发了一种个人护理管理电子工具。该工具包含一种独特的方式来帮助患者管理个人护理路径，并通过提供健康相关信息和个人日记，使他们对自己的NHL有所了解。本次评估表明，我们的电子工具满足了患者对个性化健康相关信息的需求，这可能为其他肿瘤疾病树立一个良好的典范。未来的研究应关注该电子工具在咨询过程中对医患沟通可能产生的影响。
