Journal of Rare Disorders: Diagnosis & Therapy

Information Needs of People with Rare Diseases - What Information Do Patients and their Relatives Require?

Context: Even in today’s information age, finding comprehensive and valid information on rare diseases is difficult for those affected. A “National Action Plan for People with Rare Diseases” was adopted in Germany in 2013, calling for patient oriented information systems. However, little remains known about what information patients with rare diseases and their family members require.

Objective: The study analyzed the information needs of patients living with rare diseases and of their relatives, to ensure a patient suitable information system.

Methods: Semi-structured interviews revealed patients’ experiences regarding information needs and acquisition. The evaluation followed Mayring’s structured content analysis.

Results: Interviews with 55 patients and 13 close relatives were conducted and analyzed. Patients and their relatives reported information needs ranging from medical and social law issues to practical questions helping to deal with the disease daily. Furthermore, there is demand for competent contacts for all disease-related matters, such as disease surveillance or support in submitting applications.

Conclusion: People with rare diseases and their relatives have many information needs. We identified various topics that are relevant for patients with different conditions. To improve people’s knowledge about their diseases and enable access to specialized care, this information, if applicable, should be included in an information portal on rare diseases, enabling patients’ and families’ access to relevant information at a central point.

Author(s):

Svenja Litzkendorf, Ana Babac, Daniel Rosenfeldt, Franziska Schauer, Tobias Hartz, Verena Lührs, J Matthias Graf von der Schulenburg and Martin Frank

Abstract | Full-Text | PDF

Share this