Subscribe to RSS
DOI: 10.1055/s-0042-119027
Integration von Palliativ- und Hospizstrukturen in die Versorgung neurologischer Patienten – Meinungsbild neurologischer Chefärzte in Deutschland
Integration of Palliative and Hospice Care Structures in the Care of Neurological Patients: Opinion of Chief Consultant Neurologists in GermanyPublication History
30 April 2016
26 September 2016
Publication Date:
12 December 2016 (online)
Zusammenfassung
In einer Onlineumfrage wurden neurologische Chefärzte befragt, wie sie für neurologische Patienten (NP) den Bedarf an, den Zugang zu und die Zusammenarbeit mit Palliativ- und Hospizstrukturen (PHS) einschätzten. 110 der 881 angeschriebenen Chefärzte nahmen teil. Ca. 10 % ihrer NP stuften sie als Palliativpatienten ein. Bei 9 % ihrer NP hielten sie die neurologische Erkrankung für die zugrunde liegende Todesursache. Die Integration von PHS befürworteten sie bei einer Vielzahl neurologischer Erkrankungen, gaben aber keine oder nur seltene Zusammenarbeit in 51,9 %–78,5 % an. 12 % der Teilnehmenden verfügten über eine Weiterbildung in Palliativmedizin. Um auch NP eine adäquate palliativmedizinische und hospizliche Versorgung zu ermöglichen, sollte zum einen Wissen darüber vermehrt Eingang in die neurologische Aus- und Weiterbildung finden und sollten zum anderen PHS sich auch auf die speziellen Bedürfnisse, Problemstellungen und Krankheitsverläufe von NP ausrichten.
Abstract
An online survey of chief neurological consultants was conducted to find out how they judged the demand for and access to palliative and hospice care (PHC) structures for their neurological patients (NP) as well as their collaboration with PHC structures. 110 of 881 chief consultants who were contacted participated in the survey. About 10 % of their NP were considered suitable for PHC. They estimated that 9 % of the deceased had died from their underlying neurological disease. The integration of PHC structures into the management of various neurological diseases was considered worthwhile but 51.9 – 78.5 % indicated that there was no or little collaboration with PHC structures. 12 % of the participants were trained in palliative care (PC). To guarantee an adequate PHC also for NP, PHC knowledge should be integrated into the curriculum and training of neurologists and the PC community should further extend its services to NP, adapting their knowledge and structures to these patients’ special needs.
-
References
- 1 WHO. WHO Definition of palliative care 2002. 2002 http://www.who.int/cancer/palliative/definition/en/
- 2 Higginson IJ, Hart S, Silber E et al. Symptom prevalence and severity in people severely affected by multiple sclerosis. J Palliat Care 2006; 22 (03) 158-165
- 3 Golla H, Galushko M, Pfaff H et al. Unmet needs of severely affected multiple sclerosis patients: the health professionals’ view. Palliat Med 2012; 26 (02) 139-151
- 4 Lorenzl S, Nubling G, Perrar KM et al. Palliative treatment of chronic neurologic disorders. Handb Clin Neurol 2013; 118: 133-139
- 5 Golla H, Ale Ahmad M, Galushko M et al. Glioblastoma multiforme from diagnosis to death: a prospective, hospital-based, cohort, pilot feasibility study of patient reported symptoms and needs. Support Care Cancer 2014; 22 (12) 3341-3352
- 6 Ostgathe C, Alt-Epping B, Golla H et al. Non-cancer patients in specialized palliative care in Germany: what are the problems?. Palliat Med 2011; 25 (02) 148-152
- 7 HOPE. HOPE-Bericht 2015. 2015 https://www.hope-clara.de/download_1/index.php
- 8 Golla H, Galushko M, Pfaff H et al. Multiple sclerosis and palliative care – Perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study. BMC Palliat Care 2014; 13: 1
- 9 McIlfatrick S. Assessing palliative care needs: views of patients, informal carers and healthcare professionals. J Adv Nurs 2007; 57 (01) 77-86
- 10 Kierner KA, Gartner V, Bartsch R et al. Attitudes towards palliative care in primary metastatic cancer: a survey among oncologists. Wie Klin Wochenschr 2010; 122 (01) 45-49
- 11 Kümpfel T, Hoffmann LA, Pöllmann W et al. Palliative Care in Patients with Severe Multiple Sclerosis: Two Case Reports and a Survey among German MS Neurologists. Palliat Med 2007; 21 (02) 109-114
- 12 Voltz R. Palliative Care for Multiple Sclerosis: A Counter-Intuitive Approach?. Mult Scler 2010; 16 (05) 515-517
- 13 Scalfari A, Knappertz V, Cutter G et al. Mortality in patients with multiple sclerosis. Neurology 2013; 81 (02) 184-192
- 14 Macleod AD, Taylor KS, Counsell CE. Mortality in Parkinson’s disease: a systematic review and meta-analysis. Mov Disord 2014; 29 (13) 1615-1622
- 15 Wolf J, Safer A, Wöhrle JC et al. Factors predicting one-year mortality in amyotrophic lateral sclerosis patients--data from a population-based registry. BMC Neurol 2014; 14: 197
- 16 Champagne M, Mongeau S. Effects of respite care services in a children’s hospice: the parents’ point of view. J Palliat Care 2012; 28 (04) 245-251
- 17 Higginson IJ, Hart S, Burman R et al. Randomised controlled trial of a new palliative care service: Compliance, recruitment and completeness of follow-up. BMC Palliat Care 2008; 7: 7
- 18 Pace A, Di Lorenzo C, Capon A et al. Quality of care and rehospitalization rate in the last stage of disease in brain tumor patients assisted at home: a cost effectiveness study. J Palliat Med 2012; 15 (02) 225-227
- 19 Oliver DJ, Borasio GD, Caraceni A et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2015; 23 (01) 30-38
- 20 Veronese S, Gallo G, Valle A et al. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study. BMJ Support Palliat Care 2015; DOI: 10.1136/bmjspcare-2014-000788.
- 21 Low J, Vickerstaff V, Davis S et al. Palliative care for cirrhosis: a UK survey of health professionals’ perceptions, current practice and future needs. Frontline Gastroenterology 2015; 7 (01) 1-6
- 22 Brock CM, Herndon CM. A Survey of Hospice Volunteer Coordinators: Training Methods and Objectives of Current Hospice Volunteer Training Programs. Am J Hosp Palliat Care 2016; DOI: 10.1177/1049909115625961.