14 results on '"Higginson A"'
Search Results
2. A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS).
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Murtagh, Fliss EM, Ramsenthaler, Christina, Firth, Alice, Groeneveld, Esther I, Lovell, Natasha, Simon, Steffen T, Denzel, Johannes, Guo, Ping, Bernhardt, Florian, Schildmann, Eva, van Oorschot, Birgitt, Hodiamont, Farina, Streitwieser, Sabine, Higginson, Irene J, and Bausewein, Claudia
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CATASTROPHIC illness ,COMMUNICATION ,DISCRIMINANT analysis ,EMOTIONS ,FACTOR analysis ,INTEGRATED health care delivery ,LONGITUDINAL method ,MEDICAL quality control ,HEALTH outcome assessment ,PALLIATIVE treatment ,PHYSICIANS ,PSYCHOMETRICS ,RESEARCH evaluation ,SELF-evaluation ,STATISTICAL reliability ,TREATMENT effectiveness ,MULTITRAIT multimethod techniques ,RESEARCH methodology evaluation ,FUNCTIONAL assessment ,EVALUATION ,THERAPEUTICS - Abstract
Background: Few measures capture the complex symptoms and concerns of those receiving palliative care. Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change. Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change). Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with 'unstable' or 'deteriorating' versus 'stable' Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test–retest reliability (60% of items k
w > 0.60). Longitudinal validity in form of responsiveness to change is good. Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement. [ABSTRACT FROM AUTHOR]- Published
- 2019
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3. Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale.
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Schildmann, Eva K., Groeneveld, E. Iris, Denzel, Johannes, Brown, Alice, Bernhardt, Florian, Bailey, Katharine, Guo, Ping, Ramsenthaler, Christina, Lovell, Natasha, Higginson, Irene J., Bausewein, Claudia, and Murtagh, Fliss E. M.
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INTERVIEWING ,EVALUATION of medical care ,HEALTH outcome assessment ,PALLIATIVE treatment ,QUESTIONNAIRES ,RESEARCH evaluation ,RESEARCH funding ,QUALITATIVE research ,JUDGMENT sampling ,CROSS-sectional method ,RESEARCH methodology evaluation - Abstract
Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. Aim: To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. Methods: Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement. Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway. [ABSTRACT FROM AUTHOR]
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- 2016
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4. Characteristics of episodic breathlessness as reported by patients with advanced chronic obstructive pulmonary disease and lung cancer: Results of a descriptive cohort study.
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Weingärtner, Vera, Scheve, Christine, Gerdes, Verena, Schwarz-Eywill, Michael, Prenzel, Regina, Otremba, Burkhard, Mühlenbrock, Juliane, Bausewein, Claudia, Higginson, Irene J, Voltz, Raymond, Herich, Lena, and Simon, Steffen T
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CONFIDENCE intervals ,DYSPNEA ,INTERVIEWING ,LONGITUDINAL method ,OBSTRUCTIVE lung diseases ,LUNG tumors ,RESEARCH methodology ,RESEARCH funding ,T-test (Statistics) ,TELEPHONES ,DATA analysis software ,DESCRIPTIVE statistics ,MANN Whitney U Test ,DISEASE complications ,SYMPTOMS - Abstract
The article focuses on a study which aims to describe the characteristics of episodic breathlessness in patients with advanced chronic obstructive pulmonary disease or lung cancer. It says that episodic breathlessness is a form of refractory breathlessness and that better understanding of the symptom is necessary for effective management. It concludes that effective management strategies are guaranteed to improve symptom relief and coping.
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- 2015
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5. Characterizing Episodic Breathlessness in Patients with Advanced Disease.
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Weingärtner, Vera, Bausewein, Claudia, Higginson, Irene J., Scheve, Christine, Murtagh, Fliss E.M., Voltz, Raymond, and Simon, Steffen T.
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ANALYSIS of variance ,CHI-squared test ,DYSPNEA ,HEART failure ,INTERVIEWING ,OBSTRUCTIVE lung diseases ,LUNG tumors ,MEDICAL cooperation ,RESEARCH ,RESEARCH funding ,TERMINALLY ill ,CROSS-sectional method ,SEVERITY of illness index ,DISEASE duration ,DESCRIPTIVE statistics ,KARNOFSKY Performance Status ,DISEASE complications - Abstract
Background: Episodic breathlessness is a common and distressing symptom in advanced cancer and nonmalignant diseases but there is a lack of evidence on the characteristics of the symptom. Objective: The aim of this study was to determine the duration, severity, frequency and timing of breathlessness episodes in patients with advanced diseases. Methods: Explorative analysis of pooled cross-sectional data on episodic breathlessness collected in personal interviews with patients suffering from chronic obstructive pulmonary disease, lung cancer, chronic heart failure, or motor neuron disease. Interviews were conducted as part of two studies in the UK and in Germany that included the same questions on duration, frequency, timing, and peak severity of breathlessness episodes. Severity was measured on the modified Borg scale (0-10). Results: One hundred and twenty-nine patients, 61% male, mean age of 67 years (SD 9.8), were included. The episodes described were mainly short (75%≤10 min), severe (mean 6.5 (SD 2.4), and occurred mostly daily. Frequency of episodes triggered by exertion could hardly be determined as these varied depending on patients' activity. Conclusion: Our study reveals clinically important information on the characteristics of episodic breathlessness in patients with advanced diseases. Findings have implications for the treatment of episodic breathlessness since most short-acting drugs in use have a longer onset of action compared to the duration of episodes. We need to determine patient-relevant therapeutic targets for future evaluation of adequate pharmacological and nonpharmacological management options that are urgently warranted. [ABSTRACT FROM AUTHOR]
- Published
- 2013
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6. Acceptability and Preferences of Six Different Routes of Drug Application for Acute Breathlessness: A Comparison Study between the United Kingdom and Germany.
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Simon, Steffen T., Niemand, Anna Maria, Benalia, Hamid, Voltz, Raymond, Higginson, Irene J., and Bausewein, Claudia
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ANXIETY ,COMPARATIVE studies ,CONTENT analysis ,DYSPNEA ,INTERVIEWING ,RESEARCH methodology ,CROSS-sectional method ,CRITICALLY ill patient psychology ,DATA analysis software ,PATIENTS' attitudes ,DESCRIPTIVE statistics - Abstract
Background: Opioids are the drugs of choice for management of breathlessness in advanced disease, but acute episodic breathlessness remains difficult to manage. New routes of opioid applications with quicker onset of action seem attractive for the management of episodic breathlessness. Objective: This study aimed to determine the acceptability and preference of different routes of opioid applications in patients suffering from breathlessness due to advanced disease. Design: The study consisted of structured face-to-face interviews with patients suffering from breathlessness due to lung cancer (LC), chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and motor neurone disease (MND). Images and explanation were used to illustrate six application forms (oral, inhaled, sublingual, intranasal, buccal, transmucosal). Results: Participants numbered 119 (UK n=48, Germany n=71), 60% male, mean age 67.7 years (SD 9.9); 50% suffered from COPD. Inhaled was the most accepted (87%) and preferred (68%) route of application, followed by sublingual (45%/13%) and intranasal (42%/8%). The oral was least accepted (24%) and least preferred (9%) although nearly all participants had previous experiences with it (97%). Ratings were similar in both countries but different for preferences of sublingual (UK>Germany) and intranasal (Germany>UK). In general, participants from the UK rated more often 'yes' for acceptability of all routes compared to Germany. Conclusion: Inhaled was the most accepted and preferred route of application, but no route seemed to be acceptable to all patients. Therefore, individual patient preferences should be explored before drug prescription to enhance compliance and convenience. [ABSTRACT FROM AUTHOR]
- Published
- 2012
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7. Culture and End of Life Care: A Scoping Exercise in Seven European Countries.
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Gysels, Marjolein, Evans, Natalie, Meñaca, Arantza, Andrew, Erin, Toscani, Franco, Finetti, Sylvia, Pasman, H. Roeline, Higginson, Irene, Harding, Richard, and Pool, Robert
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CULTURE & globalization ,TERMINAL care ,CRITICAL care medicine ,TERMINAL care facilities - Abstract
Aim: Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. Methods: We scoped the literature for Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. Results: A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. Conclusion: This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future. [ABSTRACT FROM AUTHOR]
- Published
- 2012
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8. Constructing Understandings of End-of-Life Care in Europe: A Qualitative Study Involving Cognitive Interviewing with Implications for Cross-National Surveys.
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Daveson, Barbara A., Bechinger-English, Dorothee, Bausewein, Claudia, Simon, Steffan T., Harding, Richard, Higginson, Irene J., and Gomes, Barbara
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QUALITY of life ,TERMINAL care & psychology ,DECISION making ,GROUNDED theory ,INTERVIEWING ,PATIENTS ,RESEARCH evaluation ,RESEARCH funding ,STATISTICAL sampling ,SELF-evaluation ,SURVEYS ,QUALITATIVE research ,JUDGMENT sampling - Abstract
Background: Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that cross-national understandings of EoLC remain unknown. Purpose: To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey. Methods: An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC. Results: Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios. Conclusion: Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe. [ABSTRACT FROM AUTHOR]
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- 2011
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9. Individual breathlessness trajectories do not match summary trajectories in advanced cancer and chronic obstructive pulmonary disease: results from a longitudinal study.
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Bausewein, Claudia, Booth, Sara, Gysels, Marjolein, Kühnbach, Robert, Haberland, Birgit, and Higginson, Irene J.
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DIAGNOSIS of dyspnea ,ANALYSIS of variance ,FISHER exact test ,LONGITUDINAL method ,OBSTRUCTIVE lung diseases ,PROBABILITY theory ,T-test (Statistics) ,TERMINALLY ill ,TUMORS ,U-statistics - Abstract
Breathlessness is a distressing symptom in advanced disease. Little is known about the trajectories of this symptom over time and towards death. This study aimed to describe and compare the summary and individual trajectories of breathlessness and overall symptom burden over time and towards the end of life following patients with advanced cancer or severe chronic obstructive pulmonary disease (COPD) in inpatient and outpatient health care settings in Germany. The modified Borg Scale, Memorial Symptom Assessment Scale Short Form and Palliative Outcome Scale were used as outcome measures. Data were collected at baseline and then monthly over six months or until death. Forty-nine cancer and 60 COPD patients were included. Both groups had similar demographics. Thirty out of the 49 cancer and 6/60 COPD patients died, 7/49 cancer and 20/60 COPD patients dropped out due to physical deterioration or questionnaire fatigue. In cancer patients, breathlessness increased towards death. In COPD patients, breathlessness increased over time. Twenty-one cancer and 43 COPD patients provided data for individual breathlessness trajectories. These revealed wide individual variations with four different patterns: fluctuation, increasing, stable and decreasing breathlessness. Symptom trajectories on the population level reflecting the whole group mask individual variation, which is reflected in distinct symptom trajectories with different patterns. [ABSTRACT FROM PUBLISHER]
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- 2010
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10. Understanding Breathlessness: Cross-Sectional Comparison of Symptom Burden and Palliative Care Needs in Chronic Obstructive Pulmonary Disease and Cancer.
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Bausewein, Claudia, Booth, Sara, Gysels, Marjolein, Kühnbach, Robert, Haberland, Birgit, and Higginson, Irene J.
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CANCER patients ,CHI-squared test ,COMPUTER software ,CONFIDENCE intervals ,DYSPNEA ,INTERVIEWING ,OBSTRUCTIVE lung diseases ,PALLIATIVE treatment ,PSYCHOLOGICAL tests ,QUESTIONNAIRES ,SURVIVAL analysis (Biometry) ,SURVIVAL ,DATA analysis ,SCALE items ,SEVERITY of illness index - Abstract
Background: Little is known about symptom burden and palliative care needs of breathless patients with advanced cancer and chronic obstructive pulmonary disease (COPD). Objectives: We aimed to describe and compare symptoms and needs in these two groups in relation to survival. Methods: Cross-sectional study of breathless patients with COPD III/IV or advanced cancer. Data were collected in an interview using the Memorial Symptom Assessment Scale short form (MSAS-SF), the modified Borg Scale, the Hospital Anxiety and Depression Scale, and the Palliative Care Outcome Scale (POS). Follow-up information was collected on survival. Results: Forty-nine patients with cancer and 60 patients with COPD were recruited. Both groups had similar demographics and a similar high symptom burden: median number of 14 symptoms; most prevalent symptoms in both groups besides breathlessness were drowsiness, lack of energy, cough; median global symptom distress on MSAS-Global Distress Index MSAS-GDI 1.6 in cancer and 1.4 in COPD. HADS depression scores were higher than HADS anxiety scores. Palliative care needs were also similar in both groups. Median survival was 107 days in patients with cancer and 589 days in patients with COPD. Conclusions: Symptom burden and palliative care needs of breathless patients with severe COPD are considerable and as high as among patients with advanced primary and secondary lung cancer although patients with COPD have a longer survival. [ABSTRACT FROM AUTHOR]
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- 2010
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11. SADLER'S GERMAN STUDIES.
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Higginson, J. H.
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BIOGRAPHICAL sources ,CONTINUING education ,EDUCATION ,SCHOOLS ,EDUCATION research - Abstract
This article focuses on the contributions of philosopher and educator Michael Sadler in the field of German studies, considering some of his literary works and biographical sources. As an enterprising undergraduate, Sadler went to Heidelberg, Germany, to learn German while teaching classics in an English boys' school. In I 884 he made the acquaintance of Joseph Wright, then assistant master on the staff of Neuenheim College in Heidelberg. In the decade before the outbreak of the first world war it is difficult not to become swamped by the multiplicity of references that Sadler made to German experience on all manner of occasions. Three pieces of work only are selected for mention, as being outstanding studies: in 1908, "Continuation Schools in England and Elsewhere" was published; in 1910 a trenchant historical analysis comparing German and English educational development in the nineteenth century was included in the volume of "Germany in the Nineteenth Century"; and in May 1912 Sadler lectured on "England's Debt to German Education in Frankfurt-am-Main," a strikingly informed address of which a reprint exists. During the 1930s Sadler did a good deal of book reviewing and there are some notable commentaries on writings like Leonard Woolf's "The Intelligent Man's Way to Prevent War" and Vernon Bartlett's "Nazi Germany Explained."
- Published
- 1958
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12. THE HOME: A GERMAN POINT OF VIEW.
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Higginson, Thomas Wentworth and Glad, Judith B.
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IMPRESSION formation (Psychology) ,IMPRESSION management ,COLLEGE teachers ,GERMANIC women - Abstract
This article reflects on an impression made by Professor Christlieb of Germany regarding the social position of women in Germany. When a young student from the U.S. recently called on Christlieb with a letter of introduction, Christlieb received him cordially, and soon engaged in a conversation about the U.S.
- Published
- 2006
13. Population, mortality and place of death in Germany (1950-2050) - Implications for end-of-life care in the future.
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Simon, S. T., Gomes, B., Koeskeroglu, P., Higginson, I. J., and Bausewein, C.
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TERMINAL care , *CRITICAL care medicine , *TERMINALLY ill , *MORTALITY , *POPULATION , *AGING , *HOSPITALS - Abstract
Objectives: European populations are ageing, but data on the associated end-of-life care needs are scarce. This study aimed to analyse population, mortality and place of death (PoD) trends in Germany since 1950, and to project mortality by PoD until 2050. Study design and methods: Secondary analysis of national statistics on population, mortality and PoD by age and gender. Future numbers and proportions of deaths by PoD -- hospital deaths (HDs) and non-hospital deaths (NHDs) - were based on recent trends (2005-2009). Linear models accounted for the effect of age and gender. Results: The German population increased by 19.0% between 1950 and 2002, and has remained relatively stable ever since. However, it is expected that it will decrease (15.4%) from 2009 to 2050 (from 81.8 to 69.4 million). The annual number of deaths has shown an increasing trend, except for a decrease in 1975-2004. A 26.0% increase is expected from 2009 to 2050 (854,544 to 1,077,000 deaths). Older people (age > 75 years) will account for 87.8% of all deaths in 2050 (64.4% in 2009). The proportion of HDs was stable, with an annual mean of 47.0% (range 44.9-47.8%). The models estimated that most people will continue to die outside of hospital in 2050 (48.6 or 54.1%), and absolute numbers of both HDs and NHDs will increase from 2009 to 2050 [HD: by 20.1 million (30.6%); NHD: by 35.5 million (17.0%)]. Conclusions: Unlike in other industrialized countries, most people in Germany die outside of hospital. The need to plan for growing end-of-life care needs and ageing is urgent in Germany but also applies to the rest of Europe. A joint European policy must inform national strategies. [ABSTRACT FROM AUTHOR]
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- 2012
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14. A critical review of advance directives in Germany: Attitudes, use and healthcare professionals’ compliance
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Evans, Natalie, Bausewein, Claudia, Meñaca, Arantza, Andrew, Erin V.W., Higginson, Irene J., Harding, Richard, Pool, Robert, and Gysels, Marjolein
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ADVANCE directives (Medical care) , *ATTITUDE (Psychology) , *MEDICAL personnel , *PHYSICIANS , *SYSTEMATIC reviews , *TERMINAL care , *DATABASES - Abstract
Abstract: Objective: Recent legal changes in Germany make non-compliance with advance directives (ADs) a criminal offence. This article assesses the evidence on attitudes towards, use of, and physician compliance with ADs in Germany. Methods: Critical review: studies on ADs, identified from a systematic review of culture and end-of-life care in Germany (11 electronic databases, 3 journals, reference lists, and grey literature), were included. An interpretative synthesis of findings revealed cross-cutting themes. Results: Thirty-two studies (1996–2009) were identified. Key themes were: awareness; utilization; compliance; and bindingness of ADs. There was a positive trend between awareness of ADs and study publication date. Use varied between patient groups (0.3–62%) and was low amongst the general population (2.5–10%). Fears about ADs’ purpose and possible abuse were identified. Physician discomfort in discussing ADs and non-compliance were reported. Physicians preferred legally binding ADs, though conflicting results were reported for patients’ desired level of bindingness. Conclusion: Although there is increasing awareness of ADs in Germany, there remains low use, poor communication, fears of abuse, some non-compliance and contradictory evidence regarding desired bindingness. Practical implications: Although legal changes will hopefully improve compliance, low awareness, communication difficulties and uncertainties surrounding ADs must be addressed if use is to increase. [Copyright &y& Elsevier]
- Published
- 2012
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