End of life care for frail older patients in family practice (ELFOP) – protocol of a longitudinal qualitative study on needs, appropriateness and utilisation of services

BACKGROUND: Frail elderly people represent a major patient group in family practice. Little is known about the patients’ needs, and how their needs evolve over time with increasing frailty towards the end of life. This study will address end-of-life care needs, service utilisation, and experiences of frail elderly patients and their informal caregivers, with regard to family practice. This paper aims to introduce the research protocol. METHODS/DESIGN: The study uses a multiple perspective approach qualitative design. The first study part consists of serial six-monthly in-depth interviews with 30 community-dwelling elderly patients (≥70 years) with moderate to severe frailty and their key informal caregivers, over a period of 18 months. Additionally, semi-structured interviews with the patients’ family physician will be conducted. The serial interviews will be analysed with grounded theory and narrative approaches. Special attention will be paid to the comparison of distinct views of the patients’, informal caregivers’, and family physicians’ as well as on chronological aspects. In the second study part, five focus groups with experts in family medicine, geriatrics, palliative medicine, and nursing will be conducted. Finally, the implications for family practice and health care policy will be discussed in an expert workshop. DISCUSSION: To our knowledge, this is the first prospective, longitudinal qualitative study on the needs of elderly patients with advanced frailty towards the end of life in German family practice, which integrates the perspectives of patients, informal caregivers, family physicians and other health professionals. The study will contribute to the understanding of the clinical, psychosocial and information needs of patients and their caregivers, and of respective changes of experiences and needs along the illness/frailty trajectory including the last phase of life. It will provide an empirical basis for improving patient-centred care for this increasingly relevant target group

Systematic development and adjustment of the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE)

Abstract Background The Supportive and Palliative Care Indicators tool (SPICT) supports the identification of patients with potential palliative care (PC) needs. An Austrian-German expert group translated SPICT into German (SPICT-DE) in 2014. The aim of this study was the systematic development, refinement, and testing of SPICT-DE for its application in primary care (general practice). Methods SPICT-DE was developed by a multiprofessional research team according to the TRAPD model: translation, review, adjudication, pretesting and documentation. In a pretest, five general practitioners (GPs) rated four case vignettes of patients with different PC needs. GPs were asked to assess whether each patient might benefit from PC or not (I) based on their subjective appraisal (“usual practice”) and (II) by using SPICT-DE. After further refinement, two focus groups with 28 GPs (68% with a further qualification in PC) were conducted to test SPICT-DE. Again, participants rated two selected case vignettes (I) based on their subjective appraisal and (II) by using SPICT-DE. Afterwards, participants reflected the suitability of SPICT-DE for use in their daily practice routine within the German primary care system. Quantitative data were analysed with descriptive statistics and non-parametric tests for small samples. Qualitative data were analysed by conventional content analysis. Focus group discussion was analysed combining formal and conventional content analysis. Results Compared to the spontaneous rating of the case vignettes based on subjective appraisal, participants in both the pretest and the focus groups considered PC more often as being beneficial for the patients described in the case vignettes when using SPICT-DE. Participants in the focus groups agreed that SPICT-DE includes all relevant indicators necessary for an adequate clinical identification of patients who might benefit from PC. Conclusions SPICT-DE supports the identification of patients who might benefit from PC and seems suitable for routine application in general practice in Germany. The systematic development, refinement, and testing of SPICT-DE in this study was successfully completed by using a multiprofessional and participatory approach

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

Leben mit chronischem Schmerz: Herausforderungen für die Versorgungsgestaltung und Patientenedukation

Müller-Mundt G. Leben mit chronischem Schmerz: Herausforderungen für die Versorgungsgestaltung und Patientenedukation. Bielefeld; 2004

Chronischer Schmerz: Herausforderungen für die Versorgungsgestaltung und Patientenedukation

Müller-Mundt G. Chronischer Schmerz: Herausforderungen für die Versorgungsgestaltung und Patientenedukation. Bern: Huber; 2005

Bewältigung komplexer Medikamentenregime bei chronischer Erkrankung - Herausforderungen und Unterstützungserfordernisse aus der Sicht der Gesundheitsprofessionen

Schaeffer D, Müller-Mundt G. Bewältigung komplexer Medikamentenregime bei chronischer Erkrankung - Herausforderungen und Unterstützungserfordernisse aus der Sicht der Gesundheitsprofessionen. Pflege. 2012;25(1):33-48

Qualitative Gesundheits- und Pflegeforschung

Schaeffer D, Müller-Mundt G, eds. Qualitative Gesundheits- und Pflegeforschung. Handbuch Gesundheitswissenschaften. Bern, Göttingen, Seattle, Toronto: Huber; 2002

Herausforderungen der Evaluation eines Interventionskonzepts zur Selbstmanagementförderung bei komplexen Medikamentenregimen in der ambulanten Pflege

Müller-Mundt G, Schaeffer D. Herausforderungen der Evaluation eines Interventionskonzepts zur Selbstmanagementförderung bei komplexen Medikamentenregimen in der ambulanten Pflege. Pflege & Gesellschaft. 2011;16(2):116-138