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Symptoms and problems in the final week of life in primary care in Belgium
Kathleen Leemans, Vrije Universiteit Brussel, End of Life Care Research Group
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Content Background Methodology Research question Results
Conclusion and discussion End-of-Life Care Research Group Vrije Universiteit Brussel
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Background Importance quality of end of life care ↑
Dying at place of wish (preferencence: 57.7%, actual: 71.8%) Symptom burden End-of-Life Care Research Group Vrije Universiteit Brussel
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Background Importance quality of end of life care ↑
Dying at place of wish (preferencence: 57.7%, actual: 71.8%) Symptom burden Little representative information about dying at home under the care of the GP End-of-Life Care Research Group Vrije Universiteit Brussel
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Background Importance quality of end of life care ↑
Dying at place of wish (preferencence: 57.7%, actual: 71.8%) Symptom burden Little representative information about dying at home under the care of the GP Goal: representative image of patients dying at home End-of-Life Care Research Group Vrije Universiteit Brussel
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Methodology Large-scale retrospective mortality study
Monitoring end-of-life care and decision making in Belgium Sentinel Network of GPs (Senti-Melc Study) “a network of practices or community based physicians who monitor one or more specific illness problems on a regular basis” representative for all Belgian GPs (age, sex, geographical distribution) End-of-Life Care Research Group Vrije Universiteit Brussel
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Methodology Registration study (n=2690)
Weekly retrospective registration in 2005/2006 of all deaths of patients Representative for all non-sudden deaths in terms of age, sex and place of death (n= 1690) Interview study (n=230) Died at home or in a care home > 1 year of age “Was death sudden and totally unexpected?” No This study: dying at home (n=205) End-of-Life Care Research Group Vrije Universiteit Brussel
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Research question Describe:
Patient characteristics Clinical characteristics Main diagnosis and comorbidities Characteristics of the dying proces: Functional status Cognitive status Symptoms (MSAS-GDI) Quality of dying For patients dying non-suddenly at home in Belgium End-of-Life Care Research Group Vrije Universiteit Brussel
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Patient characteristics
% Age (years) 1-64 35 18 65-84 116 58 85+ 48 24 Gender, female 77 38 Steady partner at time of death 132 65 End-of-Life Care Research Group Vrije Universiteit Brussel
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Patient characteristics
% Age (years) 1-64 35 18 65-84 116 58 85+ 48 24 Gender, female 77 38 Steady partner at time of death 132 65 End-of-Life Care Research Group Vrije Universiteit Brussel
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Patient characteristics
% Age (years) 1-64 35 18 65-84 116 58 85+ 48 24 Gender, female 77 38 Steady partner at time of death 132 65 End-of-Life Care Research Group Vrije Universiteit Brussel
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Patient characteristics
% Age (years) 1-64 35 18 65-84 116 58 85+ 48 24 Gender, female 77 38 Steady partner at time of death 132 65 End-of-Life Care Research Group Vrije Universiteit Brussel
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Main diagnosis End-of-Life Care Research Group
Vrije Universiteit Brussel
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Co-morbidities End-of-Life Care Research Group
Vrije Universiteit Brussel
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Functional status End-of-Life Care Research Group
Vrije Universiteit Brussel
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Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel
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Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel
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Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel
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Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel
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Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly Feeling sad 51% 69% Worrying 46% Physical Quite a bit to very much bothersome Lack of energy 91% 63% Lack of appetite 86% 42% Pain 56% 32% Shortness of breath 54% End-of-Life Care Research Group Vrije Universiteit Brussel
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Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly Feeling sad 51% 69% Worrying 46% Physical Quite a bit to very much bothersome Lack of energy 91% 63% Lack of appetite 86% 42% Pain 56% 32% Shortness of breath 54% End-of-Life Care Research Group Vrije Universiteit Brussel
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Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly Feeling sad 51% 69% Worrying 46% Physical Quite a bit to very much bothersome Lack of energy 91% 63% Lack of appetite 86% 42% Pain 56% 32% Shortness of breath 54% End-of-Life Care Research Group Vrije Universiteit Brussel
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Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly Feeling sad 51% 69% Worrying 46% Physical Quite a bit to very much bothersome Lack of energy 91% 63% Lack of appetite 86% 42% Pain 56% 32% Shortness of breath 54% End-of-Life Care Research Group Vrije Universiteit Brussel
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Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly Feeling sad 51% 69% Worrying 46% Physical Quite a bit to very much bothersome Lack of energy 91% 63% Lack of appetite 86% 42% Pain 56% 32% Shortness of breath 54% End-of-Life Care Research Group Vrije Universiteit Brussel
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Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly Feeling sad 51% 69% Worrying 46% Physical Quite a bit to very much bothersome Lack of energy 91% 63% Lack of appetite 86% 42% Pain 56% 32% Shortness of breath 54% End-of-Life Care Research Group Vrije Universiteit Brussel
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Symptoms Most difficult to manage for GP: Shortness of breath (27%)
Lack of energy (19%) Lack of appetite (12%) Pain (12%) End-of-Life Care Research Group Vrije Universiteit Brussel
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Symptoms Most difficult to manage for GP: Most bothersome for patient:
Shortness of breath (27%) Lack of energy (19%) Lack of appetite (12%) Pain (12%) Most bothersome for patient: Lack of energy (27%) Pain (16%) End-of-Life Care Research Group Vrije Universiteit Brussel
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Symptoms Most difficult to manage for GP: Most bothersome for patient:
Shortness of breath (27%) Lack of energy (19%) Lack of appetite (12%) Pain (12%) Most bothersome for patient: Lack of energy (27%) Pain (16%) All physical symptoms!! End-of-Life Care Research Group Vrije Universiteit Brussel
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Quality of dying End-of-Life Care Research Group
Vrije Universiteit Brussel
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Quality of dying End-of-Life Care Research Group
Vrije Universiteit Brussel
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Conclusion and discussion
Patient characteristics: More male patients Steady partner Clinical characteristics: Cancer >> non-cancer End-of-Life Care Research Group Vrije Universiteit Brussel
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Conclusion and discussion
Characteristics of the dying process: Low functional status Average cognitive status Most difficult to manage and most bothersome physical Shortness of breath not most common, but most bothersome AND most difficult to treat High quality of dying according to the GP End-of-Life Care Research Group Vrije Universiteit Brussel
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