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Open Access 01-12-2018 | Research article

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

Authors: Ana Babac, Martin Frank, Frédéric Pauer, Svenja Litzkendorf, Daniel Rosenfeldt, Verena Lührs, Lisa Biehl, Tobias Hartz, Holger Storf, Franziska Schauer, Thomas O. F. Wagner, J-Matthias Graf von der Schulenburg

Published in: BMC Health Services Research | Issue 1/2018

Abstract

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.

In an ideal scenario, all identified relevant aspects should be put into practice. This first scenario demonstrates how many monetary resources could be put into a telephone-based information service when aiming for a service quality similar to that of the UPD and the KID. User statistics of the KID show that only 1.51% of the patient pool uses the information service, resulting in 23,024 contacts per year [78]. Extrapolating from this number, an RD helpline would need to expect 60,589 requests per year, making 35 employees necessary to answer all requests [76‐78]. Average human resource costs of an interdisciplinary team are estimated to be 59,006.61 € per employee and year. Costs were calculated including monetary funds for rent, staffing, office equipment, publicity, and employee development. Calculating overall material costs makes an estimation of material cost per person possible, approximately 14,911.20 € in the initial year and 12,907.83 € for the following years. The calculation is based on German average wages of a mixed team consisting of physicians, social workers, and lawyers. Accordingly, an RD helpline makes funding of 2.59 € million in the first year necessary.

Because of limited budgets, a low-budget case has been discussed as a second scenario. Following interview results, the most important aspect, ‘quality of counselling by experts’, shall be obtained. Therefore, a multidisciplinary team shall be preserved, aiming for a minimum staffing by one physician, one social worker, one lawyer, and one temporary employee. Hence, a quality counselling service can indeed be offered, but, comparing both cases, the counselling team in the latter case is significantly shorthanded and therefore unable to cover all potential requests. In a base-case scenario, considering four full-time employees, overall material costs add up to 59,644.80 € for the initial year. For the following years, 51,631.30 € in costs are estimated. As previously mentioned, average human resource costs add up to a total of 236,026.44 €. Finally, the calculation results in overall costs of 295,671.24 € for the first year and 287,657.74 € for the following years.

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Title: 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
Authors: Ana Babac
Martin Frank
Frédéric Pauer
Svenja Litzkendorf
Daniel Rosenfeldt
Verena Lührs
Lisa Biehl
Tobias Hartz
Holger Storf
Franziska Schauer
Thomas O. F. Wagner
J-Matthias Graf von der Schulenburg
Publication date: 01-12-2018
Publisher: BioMed Central
Published in: BMC Health Services Research / Issue 1/2018
Electronic ISSN: 1472-6963
DOI: https://doi.org/10.1186/s12913-018-2872-9

At a glance: The STEP trials

Springer Medicine

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

Abstract

Background

Methods

Results

Conclusions

At a glance: The STEP trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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