Hals- Nasen- und Ohrenheilkunde application/pdf Zufriedenheit Retrospective survey of relatives satisfaction with the treatment of incurable head- and neck-cancer patients in advanced palliative situation urn:nbn:de:hebis:04-z2014-07449 Medical sciences Medicine Medizin Philipps-Universität Marburg https://doi.org/10.17192/z2014.0744 https://archiv.ub.uni-marburg.de/diss/z2014/0744/cover.png Retrospektive Erhebung zur Behandlungszufriedenheit der Angehörigen von Patienten mit inkurablen Kopf-Halstumoren in fortgeschrittener Palliativsituation ppn:350919631 doctoralThesis 2014-09-25 Publikationsserver der Universitätsbibliothek Marburg Universitätsbibliothek Marburg Oster MW, Vizel M, Turgeon LR. Painof terminal cancerpatients. Arch Intern Med 1978;138:1801-2. Saunders C. Foreword. In: Doyle D, Hanks GWC, MacDonald N (Hrsg.) Oxford Textbook of Palliative Medicine. Oxford University Press 1993. Levine AJ, Momand J, Finlay CA. The p53 tumour suppressor gene. Nature 1991;35:453-56. 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Palliat Med 2000;3:287- 300. monograph Hals-Nasen-Ohren-Tumor 2014 opus:5831 Palliative Care ths Prof. Dr. Sesterhenn Andreas Sesterhenn, Andreas (Prof. Dr. ) Doßmann, Julia Katharina Doßmann Julia Katharina Medizin Head-Neck-Cancer Die zunehmende Überalterung der Gesellschaft hat einen Anstieg der Prävalenz von Krebserkrankungen und anderen chronischen Erkrankungen zur Folge. Das bedeutet, dass immer mehr Menschen den Ausbruch ihrer eigenen Krebserkrankung erleben. Im Bereich der Kopf-Hals-Malignome ist speziell die steigende Prävalenz von Plattenepithelkarzinomen der oberen Luft- und Speiseröhre festzustellen. Hier bleibt die Prognose für Patienten mit fortgeschrittenen Tumoren oder Rezidiven, trotz des rasanten Fortschritts in der Entwicklung der Therapiemöglichkeiten, weiterhin schlecht. In der palliativen Situation müssen sich die Patienten und ihre Angehörigen mit der Frage nach dem Ort, an dem der Patient betreut werden möchte, auseinandersetzen. Die meisten Menschen wünschen sich, ihre letzte Lebenszeit im Kreis ihrer Angehörigen zu Hause verbringen zu können. Dennoch sind Krebspatienten und auch die Kopf-Hals-Tumorpatienten an ihrem Lebensende überwiegend in der Obhut von Institutionen. Im Fall der Kopf-Halstumorpatienten macht die Qualität ihrer Krankheit die Unterbringung in besonders spezialisierten Betreuungseinrichtungen sogar noch wichtiger als in anderen Fällen. Denn die terminale Situation von Kopf-Hals-Tumorpatienten stellt oftmals eine besonders schwere Belastung für Patienten und deren Angehörige dar. Das Ziel der vorliegenden Studie war es, die Qualität der Unterbringungsmöglichkeiten für Patienten mit inkurablen Kopf-Halstumoren vergleichend zu untersuchen. Dazu wurden Aussagen über die Qualität des Sterbens in einem Akutkrankenhaus, in einem Hospiz und in häuslicher Betreuung durch Befragung der hinterbliebenen Angehörigen ermittelt. In der vorliegenden Studie wurden 54 Angehörige befragt, die die terminale Krankheitsphase begleitet haben. Die terminale Betreuung von 24 Patienten fand in der Hals-, Nasen- und Ohrenklinik des Universitätsklinikums Gießen Marburg, Standort Marburg, statt. Weitere 16 Patienten waren im St. Elisabeth-Hospiz in Marburg untergebracht und ebenfalls 16 Patienten wurden in der häuslichen Umgebung, mit hausärztlicher Unterstützung sowie einem ambulanten Palliativdienst oder einem ambulanten Pflegedienst versorgt. Die Zufriedenheit der 54 Angehörigen wurde mit einem Fragebogen ermittelt. Die Fragen richteten sich nach folgenden Kategorien: - Aufnahmesituation zu Beginn der Palliativbetreuung - Kompetenz der Behandlung in Bezug auf Schmerzen und andere Symptome - Auskunft über Information und Zeit des ärztlichen und pflegerischen Personals - Kompetenz in der Betreuung des Betreuungspersonals - Situation nach dem Tod des Patienten Im Ergebnis lassen die ermittelten Prozentzahlen in allen fünf Fragekategorien eine zumeist durchgängig hohe Zufriedenheit mit dem Hospiz erkennen. Auch das Krankenhaus erzielt insgesamt gesehen eine hohe Zufriedenheit. Dagegen kann in den Zustimmungswerten zu der häuslichen Betreuung eine abfallende Tendenz erkannt werden. Das Resultat der Untersuchung kann in dem tendenziellen Unterschied der ermittelten Prozentwerte zwischen Hospiz und häuslicher Versorgung auf die Schwierigkeit, eine patientengerechte Betreuung im Fall der Kopf-Hals-Tumorpatienten in häuslicher Umgebung sicherzustellen, hinweisen. Somit kann abschließend festgestellt werden, dass die vorliegende Studie entlang der Ergebnisse in der aktuellen Literatur eine Tendenz in Richtung palliativmedizinischer Versorgung in einem Hospiz oder einer Palliativstation erkennt. Anhand des beschränkten Umfangs der Studie kann jedoch keine generelle Empfehlung für den Unterbringungsort in der Finalphase der Kopf-Hals-Tumorpatienten abgegeben werden. Patients with advanced head and neck cancer are commonly situated in a palliative stadium. Without any curative options left, the appropriate treating concept at this stage is the best supportive care therapy. This therapy tries to offer the best care for the terminally ill patient based on the palliative care theory. The palliative care is a holistic point of view and contains not only the best supportive care for patients in an advanced stadium of disease, but also sets out to improve the quality of life for the patients faced with a fatal illness as well as for their families. Thus, in order to comfort the patient, it provides spiritual and psychosocial support in addition to pain and symptom relief from the point of the diagnosis until the final stage of the illness. In addition it offers consultation for the bereaved during and after the decease of the patient. A particular difficult feature of the treatment of head and neck cancer patients is, that they are often faced with disfigurement in the orofacial region because of extensive tissue involvement which causes devastating side effects such as changes in appearance, speech, swallowing, severe pain, dyspnea and xerostomia. These alterations are often hard to handle for the patients and their relatives and threaten the quality of life for both. In addition, most of the patients wish to spend their final stage at home with their loved ones. However, the majority of people with a terminal illness are currently placed in a hospital or another institution like a nursing home. Thus, a central question for the palliative care of head and neck cancer patients is how to provide them with special and extensive nursing combined with medical care while offering them the greatest comfort in their accommodation. The purpose of this doctoral thesis is to examine the quality of different institutions where terminal ill head and neck cancer patients were supported during their final period of life. In order to do this, a questionnaire was administered with 56 relatives of deceased head and neck cancer patients who were treated in the Department of Otolaryngology, Head + Neck Surgery, University of Marburg, Germany, between 2000 and 2010. The thesis presents and compares the collected statements about the quality of palliative care in either the Department of Otolaryngology, Head + Neck Surgery of the University Hospital, in different local hospices, or at home with outpatient palliative care and a general practitioner. In numbers, 24 (42,9 %) of the patients were accommodated at the university hospital, 16 (26,8 %) patients stayed at a hospice and 16 (26,8 %) patients were at home during the last stage of their illness. The average patients age at the point of death was 62,5. Of the patients, 78,6 % were male and 21,4 % were female. Most of the interviewed relatives were female (73,2 %), the smaller part were male (26,8 %). Overall, the satisfaction of the respondents with the terminal care of head and neck cancer patients was equally high at the University Hospital and the hospice. However, the gathered data showed a decreasing satisfaction with terminal care at home. Therefore, the present study reveals a positive trend for specialized palliative care in a hospice or in a palliative care unit of a hospital, a result which supports the conclusion of the current literature. Nevertheless, it must be stressed, that the limited amount of participants and institutions in the present inquiry is not sufficient to clearly identify a significant difference between the satisfaction with different hospitalization forms for head and neck cancer patients in an advanced palliative situation. Palliativmedizin 2014-12-03 German