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

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Babac, A.; Frank, M.; Pauer, F.; Litzkendorf, S.; Rosenfeldt, D. et al.: 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. In: BMC Health Services Research 18 (2018), Nr. 1, 99. DOI: https://doi.org/10.1186/s12913-018-2872-9

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To cite the version in the repository, please use this identifier: https://doi.org/10.15488/3198

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Sum total of downloads: 421




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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. © 2018 The Author(s).
License of this version: CC BY 4.0 Unported
Document Type: Article
Publishing status: publishedVersion
Issue Date: 2018
Appears in Collections:Wirtschaftswissenschaftliche Fakultät

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downloads by country:

pos. country downloads
total perc.
1 image of flag of United States United States 171 40.62%
2 image of flag of Germany Germany 136 32.30%
3 image of flag of No geo information available No geo information available 22 5.23%
4 image of flag of France France 8 1.90%
5 image of flag of China China 8 1.90%
6 image of flag of Honduras Honduras 7 1.66%
7 image of flag of Serbia Serbia 5 1.19%
8 image of flag of Romania Romania 5 1.19%
9 image of flag of Russian Federation Russian Federation 4 0.95%
10 image of flag of Netherlands Netherlands 4 0.95%
    other countries 51 12.11%

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