HOPE (documentation)

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The HOPE hospice and palliative record is used as standard documentation in hospice and palliative care . It supports the processes and serves as a quality assurance instrument with the aim of improving the care situation for patients and their relatives. It has been used and processed by palliative care wards and hospices , oncological departments, as well as outpatient hospice and care services and palliative care teams since 1999 .

history

In 1996, the Federal Ministry of Health initiated the development of core documentation for palliative care units. In the working group, in cooperation with the German Society for Palliative Medicine (DGP) and the German Cancer Society (DKG), a documentation sheet was developed in which personal, disease and therapy-related data at the time of admission and at the end of treatment of palliative patients can be recorded. From 1999 onwards, nationwide data on the care of palliative patients were collected in an annual rhythm from planning meetings of the participants, documentation phase and evaluation.

documentation

The standard documentation HOPE is cross-sectoral and multi-professional as common documentation for those involved in the care of a patient. The common data base promotes cooperation and network building in outpatient and inpatient hospice and palliative care. HOPE users take part in the national hospice and palliative register at the same time. The documentation takes place in a basic sheet that contains the defined core data set of the German Society for Palliative Medicine DGP and the German Hospice and Palliative Association (DHPV). The basic form is filled out by nurses, doctors, outpatient hospice services, psychologists, social workers, pastors or physiotherapists from the perspective of the care team. There are also modules - e.g. B. a questionnaire for self-assessment of symptoms for patients, a weekly (progress) sheet, a sheet with details on wound care.

Results and advantage

Each participating institution can use its own data for further evaluations. In addition, interested parties can receive data for evaluations after consultation with the coordination group - anonymously, without specifying the institutions. Each facility receives a report as a quality assurance document, from which its own data can be seen in comparison to its own group and to the other groups ("benchmarking"). The data from health services research are also available.

financing

HOPE is supported by the participating institutions. The online documentation includes the participation in the data transmission and evaluation in the national hospice and palliative register.

Sponsorship: Coordination group from participating companies

The coordination group is made up of members of the German Society for Palliative Medicine DGP Deutsche Krebsgesellschaft DKrebsG and the German Hospice and Palliative Association DHPV. She calls for participation in HOPE.

Publications and further information

  • M. Determann, H. Ewald, P. Rzehak, D. Henne-Bruns: Quality of life in palliative medicine. Development of a specific self-assessment tool for patients as part of a multi-center project. In: Health Economics and Quality Management. 5, 2000, pp. 134-140.
  • P. Herschbach, K. Book, T. Brandl, M. Keller, G. Lindena, K. Neuwöhner, B. Marten-Mittag: Psychological distress in cancer patients assessed with an expert rating scale. In: Br J Cancer. 2008 8; 99 (1), pp. 37-43.
  • N. Krumm, S. Stiel, Christoph Ostgathe, G. Lindena, F. Nauck, F. Elsner, Lukas Radbruch and the coordination group HOPE: Subjective well-being in palliative patients - results of the hospice and palliative survey (HOPE). In: Zeitschrift für Palliativmedizin 9, 2008, pp. 132-138.
  • G. Lindena, F. Nauck, C. Bausewein , K. Neuwöhner, Heine, Schulenberg, L. Radbruch: Quality assurance in palliative medicine - results of the core documentation 1999-2002 . In: Journal for Medical Training and Quality in Health Care . 99, 2005, pp. 555-565. (PDF; 1.0 MB)
  • G. Lindena, A. Wellmann, C. Ostgathe, L. Radbruch, F. Nauck and the coordination group HOPE: Outpatient palliative care in Germany - experiences documented in HOPE; Palliative Home Care in Germany - Via HOPE Documented Experiences. In: Z Palliativmed. 2011; 12, pp. 27-32.
  • F. Nauck, C. Ostgathe, E. Klaschik, C. Bausewein, M. Fuchs, G. Lindena, K. Neuwohner, D. Schulenberg, L. Radbruch: Drugs in palliative care: results from a representative survey in Germany. In: Palliat Med. 18 (2) 2004, pp. 100-107.
  • C. Ostgathe, J. Gaertner, M. Kotterba, S. Klein, G. Lindena, F. Nauck, L. Radbruch, R. Voltz: Differential palliative care issues in patients with primary and secondary brain tumors. In: Supportiv Care in Cancer. September 2010, Volume 18, Issue 9, pp. 1157–1163.
  • M. Pestinger, C. Ostgathe, C. Bausewein, I. Strohscheer, W. Etspüler, S. Schulzeck, L. Radbruch: Antibiotics in palliative medicine: results of a focus group. In: Journal of Palliative Medicine. 5 2004, pp. 68-74.
  • L. Radbruch, F. Nauck, M. Fuchs, K. Neuwohner, D. Schulenberg, G. Lindena: What is palliative care in Germany? Results from a representative survey. In: J Pain Symptom Manage. 23 (6) 2002, pp. 471-483.
  • L. Radbruch, F. Nauck, C. Ostgathe, F. Elsner, C. Bausewein, M. Fuchs, G. Lindena, K. Neuwohner, D. Schulenberg: What are the problems in palliative care? Results from a representative survey. In: Support Care Cancer. 11 2003, pp. 442-451.
  • L. Radbruch, C. Ostgathe, F. Elsner, F. Nauck, C. Bausewein, M. Fuchs, G. Lindena, K. Neuwohner, D. Schulenberg: Processes and interventions in the German palliative care wards , results of the core documentation 2001. In : Pain. 18 (3) 2004, pp. 179-188.
  • L. Radbruch, R. Sabatowski, G. Loick, I. Jonen-Thielemann, F. Elsner, E. Hörmann: MIDOS - Validation of a minimal documentation system for palliative medicine. In: pain. 14, 2000, pp. 231-239.
  • L. Radbruch, F. Nauck: Patient Register as a Research Instrument - Using the Example of the Hospice and Palliative Survey (HOPE). In: Palliative Medicine. 2009; 10, pp. 66-68.
  • L. Radbruch, F. Nauck, C. Ostgathe, G. Lindena: HOPE manual on documentation and quality management in hospice and palliative care. der hospiz verlag, Wuppertal 2009, ISBN 978-3-941251-33-5 .
  • S. Stiel, A. Pollok, F. Elsner, G. Lindena, C. Ostgathe, F. Nauck, L. Radbruch: Validation of the Symptom & Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE). In: J Pain & Symptom Management. 14 (5) 2011, pp. 599-606.
  • S. Stiel, C. Hollberg, M. Pestinger, C. Ostgathe, F. Nauck, G. Lindena, F. Elsner, L. Radbruch and the members of the HOPE - Steering Group: Subjective Definitions and Estimates of Problem and Symptom Incidence in Palliative Care - Evaluation of Professionals' Perspectives. In: Palliative Care: Research and Treatment. 5, 2011, pp. 1-7.
  • B. Uebach, M. Kern: Wounds are incurable - palliative wound treatment of ulcerating tumor wounds. PalliaMed Verlag, Bonn 2010, ISBN 978-3-933154-21-7 .

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