Organisation des soins palliatifs en Belgique - KCE

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76 Palliative Care KCE reports 115 Almost all studies that reported the needs that were addressed mentioned multiple needs: only 3 studies focused on a single need. The content of the different categories of needs differed between studies. For example, psycho-social needs could refer to anxiety and depression whereas other studies focused on patient insight (i.e an understanding of the consequences of the disease on e.g. life expectancy, symptom control) and dimensions of quality of life, as well as psycho-social needs in informal caregivers. Biological, psycho-social, social and health care needs were mentioned in nearly half of the studies. On the opposite, spiritual needs were mentioned in one out of five studies only (n=12). The type and number of needs addressed in the studies were similar but their importance still varied according to their type. For example, biological needs were frequently addressed in all settings i.e., 12 studies conducted in home care settings (52% of 23 studies), 6 of the 14 studies in hospital and 10 studies with transmural care systems (n=20). Greater differences were noted for social needs: 12 studies in home settings (n=23) mentioned these needs, versus 5 studies in hospital (n=14) and 9 studies in transmural care systems (n=20). Spiritual needs showed the greatest differences as they were mentioned in 8 studies in home care settings (out of 23 studies), 3 studies with transmural care systems (n=20) and only one study in the hospital settings (n=14). Type of and number of outcomes measures Outcomes measures were grouped in four categories: • Biological outcomes: complications, pain and symptom control were the most frequent biological outcomes that were mentioned. Functional status (e.g. activities of daily living), survival/mortality and symptom free survival were other types of biological outcomes. • Psycho-social outcomes: satisfaction with care was one of the most frequent outcomes mentioned in this category. Quality of life, cognitive status, anxiety and depression, psychological distress, patient preferences were also analysed. • Economic outcomes included the use of health care services and resources, and the related cost. • Other outcomes included the use of specific health care services, the communication between patient and provider, the carers’ satisfaction and problems, the place of death, the length of stay in hospital and other settings, readmission rates, accessibility of care, the caregivers’ health. Psychological outcome measures were used in two thirds of the studies (40 out of 59) whereas biological outcome measures were used in 32 of the 59 studies. Economic outcome measures were also used in half of the studies (n=30). When comparing the different settings the type and number of outcome measures are similar, with the exception of psycho-social outcome measures that were used more frequently (87%) in studies conducted in home care settings compared to studies conducted in hospital settings (70%) or applied in transmural care systems (66%). Impact of the models on outcome measures Due to the large heterogeneity of the different care models there is no consistent evidence with regard to the (cost)effectiveness of the different care models. As a consequence it is not possible to conclude if care models conducted in home care, hospital or transmural care settings produce better outcomes when mutually compared. In all care models, the greatest effectiveness is reported for psychological outcome measures. This might be partly explained by the fact that this measure was frequently applied in the studies (68%). Effectiveness on biological outcome measures was shown in only 22% of the studies that applied this outcome measure. There is limited evidence with regard to the effectiveness of care models in economic terms: only 3 out of 10 studies provided positive outcomes for these measures.
KCE Reports 115 Palliative Care 77 Other positive outcomes of palliative care models are ‘satisfaction of the informal caregiver’, ‘place of death’, family morale, family insight, family anxiety, and number of unmet needs that were discussed in some care models. No positive effect on any outcome measure was reported in respectively 26% (home care studies), 42% (hospital care studies) and 50% (transmural care systems studies). 5.4 GENERAL DISCUSSION AND CONCLUSIONS This review of systematic reviews focused on the diversity and effectiveness of care models for patients who need palliative care. 5.4.1 Palliative care models found in the systematic reviews From the large number of studies that were identified in the different systematic reviews, only a limited number of the studies met the inclusion criteria. This finding demonstrates that a) care models that focus on comprehensive care delivery have been scarcely researched, and b) there are only a limited number of studies with adequate study designs in this field that have evaluated the effectiveness of different care models. Overall, care models in the different studies are not clearly labelled in the sense that it is not clear who is the lead-caregiver or what are the key objectives defined for every respective model. Clear objectives of the studies in terms of improvement in coordination and/or, continuity and/or quality of care could only be defined for a small number of studies. Since there is no clear labelling of the different care models in the literature, care models in our review are classified based on the setting in which they are conducted, being care models in home care, hospital care, nursing homes, day care and transmural care systems. The latter models include service offerings organized in multiple settings, mostly home care and hospital care. The concept of hospice care is not presented in this review as a separate model of care since the authors did not retrieve any study on hospice care that met the inclusion criteria. According to the official definition of the MESH thesaurus, hospice care refers to the specialized treatment provided to a dying person whereas palliative care encompasses earlier stages of an incurable disease, as described in the definitions section. However, the International Association of Hospice and Palliative care uses both terms as synonyms and twelve papers had hospice care in their keywords. Hospice and palliative care models might have different organization models depending on the country. For example, hospice care in the U.S is mostly provided in long-term care facilities or at the patient’s home. In the UK hospice is seen as one part of the specialty of palliative care and no differentiation is made between 'hospice' and 'palliative care'. A key conclusion of this review is that care models for patients who need palliative care presented an important heterogeneity in terms of conceptual backgrounds, settings, objectives, patient prognosis, caregivers, interventions, outcome measures and results on effectiveness of care. As a consequence, no conclusion can be drawn from this literature review that one particular model of care is superior to another care model in terms of (cost)effectiveness or efficiency of care. 5.4.2 Target populations of the palliative care models 5.4.2.1 Specific pathologies The literature review highlights the presence of multiple target populations, with many care models focusing exclusively on patients with cancer. Till recent date a rather limited number of studies have targeted patients with heart failure, neurodegenerative diseases, respiratory diseases and HIV or AIDS. Only a quarter of the studies targeted multiple pathologies at the same time. This focus on single patient populations mirrors the organisation of medical care in hospitals. In this context it is important to analyse if the needs of these particular patient populations differ or not. Previous parts of this study have identified similar needs across different patient populations who need palliative care for what concerns psychological, psycho-social and spiritual needs.
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Organisation des soins palliatifs en Belgique - KCE

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