ArticleBMC health services research2018
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.
Article in BMC health services research, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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Who cites it
9 citing papers in PubMed.
- Beyond the ICU: family resilience and emotional turmoil after intensive care - a qualitative study.International journal of qualitative studies on health and well-being · 2026Article
- Transforming clinical trials in rare genetic diseases through telemedicine.Journal of community genetics · 2026Review
- European Reference Networks - a flagship activity of the EU in the field of rare and complex diseases: from 2017 to 2025.Orphanet journal of rare diseases · 2026Review
- "The chameleon among diseases" - an explorative view of sarcoidosis and identification of the consequences for affected patients and relatives using qualitative interviews.Orphanet journal of rare diseases · 2023Article
- "Your Life Turns Upside Down": A Qualitative Study of the Experiences of Parents with Children Diagnosed with Phelan-McDermid Syndrome.Children (Basel, Switzerland) · 2022Article
- Social and Family Challenges of Having a Child Diagnosed with Phelan-McDermid Syndrome: A Qualitative Study of Parents' Experiences.International journal of environmental research and public health · 2022Article
- Navigating the U.S. health insurance landscape for children with rare diseases: a qualitative study of parents' experiences.Orphanet journal of rare diseases · 2021Article
- Article
- Fair allocation of telemedical counseling services in early detection of Alzheimer's disease: Empirically informed ethical considerations.Alzheimer's & dementia (Amsterdam, Netherlands)Article
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Authors and funding
12 authors.
Funding
Abstract
backgroundRare 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.
methodsIn 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.
resultsOut 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.
conclusionsTherefore, 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.
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