APVEL: Evaluation of specialized outpatient palliative care (SAPV) in North-Rhine / Germany

German Version

Project management: Prof. Dr. Raymond Voltz (in cooperation with Prof. Dr. Roman Rolke, Director Clinic for Palliative Medicine, University Hospital RWTH Aachen and Prof. Dr. Lukas Radbruch, Director Clinic for Palliative Medicine, University Hospital Bonn)
Contact: Dr. Kim Dillen, Melanie Joshi, Dr. Dr. Julia Strupp
Duration: 06/2017 - 05/2019
Funding Institution: Federal Joint Committee (G-BA), Innovation Fund - Project Management Agency (DLR)

Project Description

The majority of terminally ill patients wishes to die at home. Since 2007, the German statutory health insurance covers Specialized Outpatient Palliative Care (SAPV) offers team-based home care for patients with advanced and progressive disease, complex symptoms and life expectancy limited to days, weeks or months. SAPV, in accordance with § 37b SGB V, serves - in addition to General Outpatient Palliative Care (AAPV) - the purpose of supporting palliative care patients at home with regard to their quality of life, foster the patient’s autonomy, relieve their symptoms and allow a decent living and dying in his/her familiar home environment. The regulation is carried out for SAPV patients with a complex need for care caused by a complex symptom burden, which AAPV can no longer guarantee. However, the efficiency of SAPV in North Rhine has not yet been evaluated.

The present project is a sub-study of the APVEL project. This sub-project will evaluate SAPV in comparison to AAPV in urban as well as rural regions in North Rhine. The primary target group of the present sub-study are patients with incurable and progressive tumor and non-tumor diseases in the urban areas of Aachen, Bonn and Cologne and rural areas such as Aachen Land or Rhein-Sieg Kreis. The Department of Palliative Medicine of the University of Cologne will perform the data collection in Cologne.

To evaluate the efficiency of SAPV/AAPV, patients, their relatives as well as members palliative care team will be asked about their personal experiences with the respective care by means of narrative interviews and a questionnaire. The long-term efficiency will be analysed through subsequent telephone follow-ups with the patients using the same questionnaire. The study is thus conducted as a prospective quantitative and qualitative analysis. The aim is to draft appropriate recommendations for the advancement of SAPV in Germany.

The project is being carried out in cooperation with the chairs of palliative medicine in Aachen and Bonn.

Zur Person
Qualifications and professional experience
Since 10/2018 Research assistant at the Department of Palliative Medicine, University Hospital of Cologne
10/2013 - 03/2017 Master of Arts (Latin American Studies/ Social Sciences), University of Cologne
10/2012 - 10/2013 Second Course of Studies: Politics and Society, University of Bonn
10/2008 - 03/2013 Bachelor of Arts (Latin American Studies/ Economics), University of Cologne
2010 - 2018  Student assistant in the care sector/Nurse, University Hospital Cologne
2004 - 2007 Nursing-School, Offenbach a.M.

Research Focus

  • Evaluation of specialized outpatient palliative care (APVEL)
  • Living well, dying well (iLIVE)
  • Early Palliative Care for Glioblastoma Patients (EPCOG)
Zur Person
Qualifications and professional experience
Since 07/2013 Research Coordinator at the Department of Palliative Medicine, University of Cologne
2015 Doctoral Thesis (Dr. rer. medic.) - Validation of the German Version of the Schedule of Attitudes towards Hastened Death (SAHD-D) (Prof. Dr. Raymond Voltz, Medical Faculty of the University of Cologne)
2011 Doctoral Thesis (Dr. paed.) - Successful aging of people with physical disabilities and the sense of coherence as a resource in the aging process (Prof. Dr. Mathilde Niehaus, Faculty of Human Sciences / University of Cologne)
2009 - 2013 Research Associate at the Department of Palliative Medicine, University of Cologne
2005 - 2009 Research Associate at the Leibniz Institute for the Social Sciences (GESIS) at the Center of Excellence Women and Science (CEWS)
2004 Magistra Artium (M.A.)
1999 - 2004 Social and Behavioral Sciences (University of Hagen)
1999 - 2005 Division of Disability Services, Family Supportive Services, Diakonie Bonn
Research Focus
Health Services Research, the last year of life in Cologne, specialized outpatient palliative care, development of a tool to assess a desire to hasten death, palliative care integration for neurological patients (early integration, unmet needs); patient-centered care, palliative care structures for neurological patients
Teaching
“Methods of Empirical Social Research, Text Analysis and Counselling and Intervention" (Master Gender & Queer Studies)
Medical Sociology (Research Processes in Medical Sociology), Seminar
Lecture series Research Track
Memberships
Member of the Consilium for junior researchers at the University of Cologne (Representative for the Medical Faculty)
Member of the Research Working Group (AG Forschung) of the German Association of Palliative Medicine (DGP)
Steering Board Member CoReNet (Cologne Research and Development Network)
Completed projects
  • Validation of the German version of the Schedule of Attitudes toward Hastened Death (DKH funded)
  • Impact of a case management model on the specialised palliative care multi-professional team (DKH funded)
  • Palliative Care for severely affected MS patients: a Delphi survey of healthcare professionals (DMSG)
  • Multiple Sclerosis and Palliative Care: Assessing Unmet Needs“ (Gemeinnützige Hertie-Stiftung)
  • Views on life of palliative care patients (DKH)
  • Advance Directive and Health Care Proxy – Strengthening cancer patient autonomy by improving surrogate decision making (CIO)
Reviewer (i.e.)
  • Palliative Medicine
  • Journal of Palliative Medicine
  • European Journal of Public Health
  • Zeitschrift für Palliativmedizin
  • PLOS One
  • Social Work in Health Care
  • Psycho-Oncology
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