Projects related to health services research

Center for Palliative Medicine

Living well, dying well. A research programme to support living until the end (iLive)

Project leader: Prof. Dr. Raymond Voltz, Dr. Dr. Julia Strupp

Contact: Dr. Dr. Julia Strupp, Melanie Joshi

Duration: 01/2019-12/2022

Funding: EU-Horizon 2020

Project description:

In this four-year project, which is coordinated by the ErasmusMC in Rotterdam, researchers from 13 countries will collaborate to increase our knowledge and provide applicable policy advice on palliative care in Europe. The iLIVE project will investigate the effectiveness and cost-effectiveness of two innovative interventions in end-of-life care. Its objective is to develop and evaluate a digital clinical tool to optimize medication management to relieve symptoms that occur at the end of life, and an international volunteer programme to support patients dying in the hospital and their families. A prospective cohort study will collect data on the concerns, expectations and preferences concerning dying and end-of-life care, of terminally ill patients and their caregivers and deliver the first Core Outcome Set for care of the dying.

Our part in Cologne is to collect data on these issues at the individual level and we will also relate the findings on individual participants to broader cultural and religious values. Within the cohort, data will be collected upon patients’ inclusion in the study (baseline assessment), one month after inclusion (follow-up assessment 1), in the last days of life (follow-up assessment 2), and 90 days post-bereavement (follow-up assessment 3).

In principle, all competent adult patients with an estimated life expectancy of six months or less are eligible, regardless of their diagnosis, gender or age, or place of residence. To define eligibility for the study, we will use a modified version of the Gold Standards Framework Proactive Identification Guidance (GSF-PIG) that includes the ‘surprise question’ (SQ) and the Supportive and Palliative Care Indicators Tool (SPICT).

Cognitive and behaviour-oriented procedures for the therapy of and handling with acute breathing difficulties of patients with a not curable and advanced disease. A single arm, exploratory therapy study (Phase II) (CoBeMEB)

Project leader: PD. Dr. Steffen Simon

Contact: Yvonne Eisenmann, Karlotta Schlösser

Duration: 09/2017 – 08/2020

Funding institution: Federal Ministry of Education and Research

Project description:


Efficiency of specialized out-patient palliative care (SAPV) and general out-patient palliative care (AAPV) in North Rhine (APVEL)

Sub-Study: Evaluation of SAPV / AAPV efficiency in urban vs. rural regions in North Rhine

Project management: Prof. Dr. Raymond Voltz (in cooperation with Univ.-Prof. Dr. Roman Rolke, Director Clinic for Palliative Medicine, University Hospital RWTH Aachen and Univ.-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. SAPV, in accordance with § 37b SGB V, serves - in addition to AAPV - the purpose of supporting palliative care patients at home with regards to their quality of life and self-determination and to relieve their symptoms. The regulation is carried out for SAPV patients with a complex need for care caused by a complex symptom event, which the 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 the SAPV in comparison to the 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 disease in the urban areas of Aachen, Bonn and Cologne and rural areas such as Aachen Land or Rhein-Sieg Kreis. The Center for Palliative Medicine of the University of Cologne will perform the data collection in Cologne.

To evaluate the efficiency of SAPV / AAPV, patients, their relatives and 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 investigated through subsequent telephone contact with the patients using the same questionnaire. The acquisition is thus carried out 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.

The desire to die in palliative care: Optimization of management (DEDIPOM)

Project management: Prof. Dr. Raymond Voltz, Dr. Kerstin Kremeike

Contact: Dr. Kerstin Kremeike, Leonie Gehrke, Carolin Rosendahl

Duration: 05/2017 – 04/2020

Funding: Federal Ministry of Education and Research

Project Description:

A desire to die (DD) is frequent in palliative care. However, uncertainty remains as to the appropriate therapeutic response. To support health practitioners' (HPs) reactions to a patient’s DD, a training program and a first draft of a semi-structured clinical interview schedule with prompts (CISP) has been developed. This research project aims at revising and finding consensus on the CISP. The CISP is then meant to be used in addressing death and dying and dealing with DD in everyday clinical practice. To this end, the CISP too will be tested and then evaluated in clinical practice.

The study comprises a three step study design: (1) revision of the CISP and consensus finding based on semi-structured interviews with patients and a Delphi process with (inter-)national experts, patient representatives and relatives; (2) increasing confidence in HPs through a 2 day training program using the consented CISP; (3). a formative quantitative evaluation of conversations between HPs and patients (at three time points) and a qualitative evaluation based on interview triads of patients, relatives and HPs. The evaluation of conversations will include patient-oriented outcomes, including perceived relationships with HPs and death and dying distress.

Those interventions aim at providing a framework for open conversation and should strengthen the relationship between HPs and patients so that even difficult subjects can be discussed. Overall, the quality of life of patients with DD as well as the conversation skills and action taking of HPs should thus increase in relevant ways.

Last Year of Life Study Cologne (LYOL-C)

Scientific management: Prof. Dr. Raymond Voltz, Dr. Julia Strupp (Department of Palliative Medicine, University Hospital of Cologne), Prof. Dr. Christian Rietz (Faculty of Human Sciences, University of Cologne)

Research associates: Gloria Hanke, Nicolas Schippel

Duration: 02/2017 – 01/2020

Funding institution: Federal Ministry of Education and Research

Project description:

The subproject LYOL-C examines the last year of life of patients in Cologne independent from their indication. The research will be focused on the health and social care trajectories, transitions between different care Providers and the concomitant burden for both patients and relatives. The aim of the project is to demonstrate possibilities for optimization regarding the modification of trajectories, transparency of transitions, increase of sustainability of care, reduction of burden for patients and relatives, and more efficient use of resources.

Method: Retrospective mixed methods study

  • Secondary data analysis: Statutory Health Insurance (SHI) data from deceased patients in Cologne.
  • Surveys with relatives (n = 400) of deceased patients in Cologne via postal questionnaire.
  • Interviews with relatives (n = 40-60) of deceased patients in Cologne via qualitative manual-based interviews.
  • Focus groups (n = 3–5) with professionals participating in health and social care at the end of life.

Evaluation of a palliative and hospice telephone hotline for severely affected Multiple Sclerosis patients and their caregivers

Scientific management: Prof. Dr. Raymond Voltz, PD Dr. Heidrun Golla

Contact: Dr. Dr. Julia Strupp, G. Grede


Funding institution: Gemeinnützige Hertie-Stiftung (mitMiSsion)

Project description:

Patients severely affected by multiple sclerosis (MS) - as well as their informal caregivers - have multiple supportive and palliative care needs. Already established care systems alone do not necessarily address all of the patients´ needs, and there are first indications that palliative and hospice care (PHC) can be a valuable complementary asset for patients severely affected by MS. In order to bring patients severely affected by MS in contact with PHC, we established a counselling PHC hotline specific for MS. A hotline allows for consultation that does not require patients to leave their home. The preliminary evaluation of the hotline came to the conclusion that it was well accepted by patients and their formal and informal caregivers and seems to be a valuable service in order to gain information about and access to PHC.

Since September 2014 this hotline has been extended nationwide to:

  • provide information about PHC
  • assess the caller’s eligibility for PHC
  • recommend appropriate local available PHC services according to the individual´s needs

The aim of this study is to 1) evaluate the hotline including its relevance, its callers, their characteristics and queries, and 2) analyse challenges and possible barriers to integrating PHC services into the treatment of severely affected MS patients by conducting follow-up calls. The nationwide hotline was designed and introduced to the MS community in cooperation with the German Multiple Sclerosis Society (DMSG). Calls were documented using a documentation form supplemented by personal notes capturing sociodemographic and disease-related information as well as concerns regarding death and dying. Data was analysed descriptively.

S3-Guideline Palliative Care for patients with incurable cancer, part 1 and 2

Project leader: Prof.'in C. Bausewein, Prof. R.Voltz, PD Dr. St. Simon

Contact: PD Dr. St. Simon

Duration: 05/2011- 12/2015; Part 2: 01/2016-12/2018

Funding institution:

Project description:


Identify and face needs of people with dementia in their final stage of life: Implementation of a working instrument into daily care in ambulant and stationary geriatric care

Project leader: Dr. K.M. Perrar, Prof. Dr. R. Voltz

Contact: H. Schmidt, Y. Eisenmann

Duration: 09/2015 - 08/2017

Funding institution:

Project description:


Development and evaluation of a training concept for professionals and their dealing with death wishes of oncological patients

Project leader: Prof. Dr. Raymond Voltz, Dr. Maren Galushko

Contact: V. Romotzky, G. Frerich

Duration: 04/2015 - 03/2017

Ffunding institution: Wilhelm-Sander Stiftung

Project description:

Acceptance of clinical trials in palliative care

Project leader: PD Dr. med S. Simon, MSc.

Contact: PD Dr. med. S. Simon, MSc., Dr. rer. medic. V. Weingärtner

Duration: 03/2013 - 11/2014

Funding institution:


Views of life – Interviews with palliative patients

Project leader: Prof. Dr. R. Voltz

Contact: V. Romotzky, Dr. J. Strupp

Duration: 10/2012 - 01/2014

Funding institution: Deutsche Krebshilfe e.V.


Development of a catalogue of criteria to identify needs of palliative patients with highly advanced dementia in stationary geriatric care

Project leader: Dr. K.M. Perrar

Contact:Y. Eisenmann, H. Schmidt

Duration: 08/2011 - 05/2015

Funding institution:


S3-Guideline palliative care for patients with cancer

Project leader: Dr. S. Simon (coordination: Prof.'in C. Bausewein, Prof. R.Voltz)

Contact: V. Geffe, M.A., Dr. S. Simon und Dr. A. Pralong

Duration: 05/2011- 05/2014

Funding institution: