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Kathleen Leemans, Vrije Universiteit Brussel,

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Presentation on theme: "Kathleen Leemans, Vrije Universiteit Brussel,"— Presentation transcript:

1 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

2 Content Background Methodology Research question Results
Conclusion and discussion End-of-Life Care Research Group Vrije Universiteit Brussel

3 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

4 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

5 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

6 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

7 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

8 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

9 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

10 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

11 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

12 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

13 Main diagnosis End-of-Life Care Research Group
Vrije Universiteit Brussel

14 Co-morbidities End-of-Life Care Research Group
Vrije Universiteit Brussel

15 Functional status End-of-Life Care Research Group
Vrije Universiteit Brussel

16 Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel

17 Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel

18 Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel

19 Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel

20 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

21 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

22 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

23 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

24 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

25 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

26 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

27 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

28 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

29 Quality of dying End-of-Life Care Research Group
Vrije Universiteit Brussel

30 Quality of dying End-of-Life Care Research Group
Vrije Universiteit Brussel

31 Conclusion and discussion
Patient characteristics: More male patients Steady partner Clinical characteristics: Cancer >> non-cancer End-of-Life Care Research Group Vrije Universiteit Brussel

32 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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