gms | German Medical Science

16. Deutscher Kongress für Versorgungsforschung

Deutsches Netzwerk Versorgungsforschung e. V.

4. - 6. Oktober 2017, Berlin

Improving health care for people living with FTLD and their families – Analysis of Lived Experience, Quality of life, Social Health and Health Care and their association to clinical characteristics of the disease – a study protocol-

Meeting Abstract

  • Claudia Dinand - Deutsches Zentrum für neurodegenerative Erkrankungen (DZNE) e.V., Witten, Germany
  • Martin Dichter - Deutsches Zentrum für neurodegenerative Erkrankungen (DZNE) e.V., Witten, Germany
  • Wolfgang Hoffmann - Universitätsmedizin Greifswald, Greifswald, Germany
  • Margareta Halek - Deutsches Zentrum für neurodegenerative Erkrankungen (DZNE) e.V., Witten, Germany
  • Jochen René Thyrian - Deutsches Zentrum für Neurodegenerative Erkrankungen e.V. (DZNE), Greifswald, Germany

16. Deutscher Kongress für Versorgungsforschung (DKVF). Berlin, 04.-06.10.2017. Düsseldorf: German Medical Science GMS Publishing House; 2017. DocP166

doi: 10.3205/17dkvf399, urn:nbn:de:0183-17dkvf3992

Veröffentlicht: 26. September 2017

© 2017 Dinand et al.
Dieser Artikel ist ein Open-Access-Artikel und steht unter den Lizenzbedingungen der Creative Commons Attribution 4.0 License (Namensnennung). Lizenz-Angaben siehe



Background: Frontotemporal dementia (FTD) is the clinical term for a pathological, heterogeneous set of neurodegenerative disorders that together are known as frontotemporal lobar degenerations (FTLDs). The neuropsychological and functional abilities in people with FTLD are more severely affected than in individuals with other types of dementia. This has a strong impact on everyday life of people with FTLD, their families and the health care system including financial problems, family conflicts, high rates of depression, substantial caregiver burden and a decrease in health related quality of life. Additionally, the diagnostic process remains difficult with a high rate of misdiagnosis and inappropriate health care service.

(1) There is a clear lack of research on quality of life, coping or social interaction for people with FTLD. Less research has been done addressing the subjective experiences and the lived experience of people with FTLD and their relatives. Especially in Germany only a few studies have aimed on psycho-social factors or health care issues.

(2) Existing analyses on burden of disease are not connected to the broader social network. Data on formal and informal costs and cost-effectiveness of management and treatment for people with FTLD do not exist.

(3) Existing results have methodological limitations concerning their generalizability and validity, are too heterogeneous or do not differentiate in subtypes.

(4) Previous research is mainly based on cross-sectional analyses, thus only able to identify associations. Longitudinal analyses however could describe pathways and identify supporting/ hindering factors for the course of the burden of disease, thus offering target points to develop and design effective interventions

Objectives: DESCRIBE-FTD-HC is an add-on-study to the broader register study of neurodegenerative diseases (DESCRIBE). The overall aim is to provide evidence for the development of specific interventions for people with FTLD and their families by describing and analysing the lived experience, quality of life, psychosocial and health care for people living with FTLD and their association to clinical characteristics of the disease, their changes over time and their differences between FTLD-subtypes.

Design and Methods: Based on a framework developed in previous studies the data will be collected in a longitudinal mixed-method approach focussing on:

lived experience and subjective views on specific challenges, needs and adaptation for people living with FTLD and their relatives during the trajectory of the illness
different domains of quality of life.
psychosocial factors and social health regarding health care utilisation of people with FTLD and their caregivers and social and economic burden of disease including protective or risk factors.

Recruitment/ Eligibility: All participants of DESCRIBE-FTD are eligible to participate in this study and will be asked for their written informed consent at the time of the standard FTLD routine assessment.

Data Assessment/ Data Collection: For the qualitative data collection an explorative approach will be chosen using creative, open and flexible methods to enable participating according to the CORTE-criteria.Therefore people with FTLD and their family members will be interviewed annually in their own home according to their respective disease related abilities using theoretical sampling until saturation of data. All conducted data will be audiotaped, transcribed verbally and analysed using content analysis combined with narrative approaches.

The quantitative data collection will be conducted using standardized questionnaires and computer assisted data assessment (CATI).

Quality of life will be assessed by AAIQOL (self & proxy), BASQUID (self) and the Clinical Insight Rating (proxy) for people with FTLD and the QCRS (Quality of the Current Relationship Scale) for respective family members. KIDSCREEN will be applied in families with children/teens under the age of 18.

Aspects of Social health will be assessed by socio-economic status, RUD, EQ5-D, FIMA, BSSS, HrQoL, DelpHi-ass for people with FLTD. For the Family members SHiP and DelpHi will be used to assess Health status in addition to the Caregiver burden and needs assessment.

Expected results: This research will provide evidence and gain new innovative knowledge about the insights and subjective needs, adaption und usage patterns within the trajectory of living with FTLD for concerned persons and their families; the process and associated factors of Quality of life aspects in the course of the disease as well as psycho-social aspects, caregiver burden and utilisation of health services and associated factors.

Overall this will be the first step for the development, evaluation and Implementation of individualized and tailored interventions for people with different subtypes of FTLD and their families. In the end this will improve the health care and living situation of people affected.