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首页> 外文期刊>Interactive Journal of Medical Research >Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians
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Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians

机译：使用群体决策工具塑造关于罕见病的有效健康信息网站：包括患者，其家庭成员和医师的观点

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Background Despite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, scarce medical and scientific knowledge, and unsatisfactory treatment options all trigger the search for health information by patients, family members, and physicians. Examining and systematically integrating stakeholder needs can help design information platforms that effectively support this search. Objective The aim of this study was to innovate on the group decision-making process involving patients, family members, and physicians for the establishment of a national rare disease Internet platform. We determined differences in the relevance of health information—especially examining quantifiable preference weights—between these subgroups and elucidated the structure and distribution of these differences in people suffering from rare diseases, their family members, and physicians, thus providing information crucial to their collaboration. Methods The included items were identified using a systematic Internet research and verified through a qualitative interview study. The identified major information needs included medical issues , research , social help offers , and current events . These categories further comprised sublevels of diagnosis , therapy , general disease pattern , current studies , study results , registers , psychosocial counseling , self-help , and sociolegal advice . The analytic hierarchy process was selected as the group decision-making tool. A sensitivity analysis was used to determine the stability and distribution of results. t tests were utilized to examine the results’ significance. Results A total of 176 questionnaires were collected; we excluded some questionnaires in line with our chosen consistency level of 0.2. Ultimately, 120 patients, 24 family members, and 32 physicians participated in the study (48 men and 128 women, mean age=48 years, age range=17-87 years). Rankings and preference weights were highly heterogeneous. Global ranking positions of patients, family members, and physicians are shown in parentheses, as follows: medical issues (3/4, 4, 4), research (3/4, 2/3, 3), social help offers (1, 2/3, 2), and current events (2, 1, 1); diagnosis (6, 8, 9), therapy (5, 9, 7), general disease pattern (9, 4/5/6, 6), current studies (7, 4/5/6, 3), study results (8, 7, 8), registers (4, 1, 5), psychosocial counseling (1, 2, 4), self-help (3, 3, 2), and sociolegal advice (2, 4/5/6, 1). Differences were verified for patients for 5 information categories (P =.03), physicians for 6 information categories ( P =.03), and family members for 4 information categories ( P =.04). Conclusions Our results offer a clear-cut information structure that can transparently translate group decisions into practice. Furthermore, we found different preference structures for rare disease information among patients, family members, and physicians. Some websites already address differences in comprehension between those subgroups. Similar to pharmaceutical companies, health information providers on rare diseases should also acknowledge different information needs to improve the accessibility of information.
机译：背景技术尽管对罕见病的定义存在分歧，但患有罕见疾病的人也面临着类似的困难。卫生专业人员缺乏经验，从最初症状到诊断的漫长等待，稀缺的医学和科学知识以及不令人满意的治疗方案，所有这些都触发​​了患者，家庭成员和医生对健康信息的搜索。检查并系统地集成利益相关者的需求可以帮助设计有效支持此搜索的信息平台。目的本研究旨在创新涉及患者，家庭成员和医生的集体决策过程，以建立全国罕见病互联网平台。我们确定了这些亚组之间健康信息相关性的差异，尤其是检查了可量化的偏好权重，并阐明了这些差异在罕见病患者，其家庭成员和医生中的结构和分布，从而提供了对其合作至关重要的信息。方法使用系统的互联网研究方法确定所包括的项目，并通过定性访谈研究对其进行验证。确定的主要信息需求包括医疗问题，研究，社会帮助提议和时事。这些类别进一步包括诊断，治疗，一般疾病模式，当前研究，研究结果，登记册，社会心理咨询，自助和社会法律咨询等子级别。选择层次分析法作为小组决策工具。敏感性分析用于确定结果的稳定性和分布。 t检验用于检验结果的重要性。结果共收集问卷176份。我们排除了一些符合我们选择的一致性水平0.2的问卷。最终，有120位患者，24位家庭成员和32位医生参加了研究（48位男性和128位女性，平均年龄= 48岁，年龄范围= 17-87岁）。排名和偏好权重高度不同。括号中显示患者，家庭成员和医生的全球排名位置，如下所示：医疗问题（3/4，4，4），研究（3/4，2/3，3），社会救助（1， 2/3，2）和当前事件（2，1，1）;诊断（6、8、9），治疗（5、9、7），一般疾病模式（9、4 / 5 / 6、6），当前研究（7、4 / 5 / 6、3），研究结果（ 8、7、8），登记册（4、1、5），社会心理咨询（1、2、4），自助（3、3、2）和社会法律咨询（2、4 / 5 / 6、1 ）。验证了患者的5种信息类别（P = .03），医生的6种信息类别（P = .03）和家庭成员的4种信息类别（P = .04）的差异。结论我们的结果提供了一种清晰的信息结构，可以透明地将团队决策转化为实践。此外，我们发现患者，家庭成员和医生对稀有疾病信息的偏好结构不同。一些网站已经解决了这些子组之间在理解上的差异。与制药公司类似，罕见病健康信息提供者也应认识到不同的信息需求，以改善信息的可获取性。

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