Babac, Ana
[Author];
Litzkendorf, Svenja
[Author];
Schmidt, Katharina
[Author];
Damm, Kathrin
[Author];
Frank, Martin
[Author];
Schulenburg, Johann-Matthias Graf von der
[Author];
Pauer, Frederic
[Author]
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
- [published Version]
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Media type:
E-Article;
Text
Title:
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
Contributor:
Babac, Ana
[Author];
Litzkendorf, Svenja
[Author];
Schmidt, Katharina
[Author];
Damm, Kathrin
[Author];
Frank, Martin
[Author];
Schulenburg, Johann-Matthias Graf von der
[Author];
Pauer, Frederic
[Author]
imprint:
College Park : American Physical Society, 2017
Published in:Interactive Journal of Medical Research 6 (2017), Nr. 2
Footnote:
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Description:
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 ...