TY  - JOUR
A1  - Babac, Ana
A1  - Frank, Martin
A1  - Pauer, Frédéric
A1  - Litzkendorf, Svenja
A1  - Rosenfeldt, Daniel
A1  - Lührs, Verena
A1  - Biehl, Lisa
A1  - Hartz, Tobias
A1  - Storf, Holger
A1  - Schauer, Franziska
A1  - Wagner, Thomas O. F.
A1  - Schulenburg, Johann-Matthias von der
T1  - Telephone health services in the field of rare diseases : a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany
T2  - BMC health services research
N2  - Background: Rare diseases are, by definition, very serious and chronic diseases with a high negative impact on quality of life. Approximately 350 million people worldwide live with rare diseases. The resulting high disease burden triggers health information search, but helpful, high-quality, and up-to-date information is often hard to find. Therefore, the improvement of health information provision has been integrated in many national plans for rare diseases, discussing the telephone as one access option. In this context, this study examines the need for a telephone service offering information for people affected by rare diseases, their relatives, and physicians.
Methods: In total, 107 individuals participated in a qualitative interview study conducted in Germany. Sixty-eight individuals suffering from a rare disease or related to somebody with rare diseases and 39 health care professionals took part. Individual interviews were conducted using a standardized semi-structured questionnaire. Interviews were analysed using the qualitative content analysis, triangulating patients, relatives, and health care professionals. The fulfilment of qualitative data processing standards has been controlled for.
Results: Out of 68 patients and relatives and 39 physicians, 52 and 18, respectively, advocated for the establishment of a rare diseases telephone service. Interviewees expected a helpline to include expert staffing, personal contact, good availability, low technical barriers, medical and psychosocial topics of counselling, guidance in reducing information chaos, and referrals. Health care professionals highlighted the importance of medical topics of counselling—in particular, differential diagnostics—and referrals.
Conclusions: Therefore, the need for a national rare diseases helpline was confirmed in this study. Due to limited financial resources, existing offers should be adapted in a stepwise procedure in accordance with the identified attributes.
KW  - Rare diseases
KW  - Telemedicine
KW  - Health-seeking behaviour
KW  - Helpline
KW  - Health information
Y1  - 2018
UR  - http://publikationen.ub.uni-frankfurt.de/frontdoor/index/index/docId/45686
UR  - https://nbn-resolving.org/urn:nbn:de:hebis:30:3-456868
SN  - 1472-6963
N1  - © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
VL  - 18
IS  - 1, Art. 99
SP  - 1
EP  - 14
PB  - BioMed Central
CY  - London
ER  -