study protocol, neuropalliative care, research project

Currently, there has been an increasing concern about the provision of palliative care in non-oncological patients in both professional literature and clinical practice. However, there is not much scientific information on how to provide neurological and palliative care together. The main aim of our research project is to create and verify a concept of neuropalliative and rehabilitative care for patients with selected neurological diseases (Parkinson´s syndrome, motor neuron disease, multiple sclerosis, Huntington?s disease) in an advanced stage of the disease. Further, to evaluate bio-psychosocial and spiritual needs of these patients and their carers in relation to the quality of life using created standardized tools. Methodology. Triangulation of research methods (qualitative and quantitative) will be use. In the first phase we will assess the current situation and identify unmet needs and on their basis a concept of integrated care model will be created. We will use the methods of qualitative research, such as in-depth interviews and focus groups. Selected healthcare professionals (doctors, nurses, and physiotherapists), social workers, selected patients with neurological diseases and their caregivers will participate in the qualitative research. Qualitative data will be analyzed using a method of grounded theory. In the second phase we will develop and validate assessment tools for patients in individual stages of the disease and for their caregivers based on a systematic approach (analysis of theoretical starting points, measurement tools and focus groups). For evaluating the psychometric properties of the questionnaire we will use selected methods, namely content validity, construct validity and reliability. Emphasis will be put on creating assessment tools for evaluation of the specific needs of patients with progressive neurological disease (dyspnoea, pain, nutrition, fatigue, immobility, self-insufficiency, anxiety, depression, dysarthria, and assessment of ethical aspects of care, psychosocial and spiritual needs). In the third phase, within an intervention study, we will evaluate the difference in a saturation of needs and quality of care in patients who have received care in the intervention group as part of an integrated concept of neuro-palliative and rehabilitative care compared with a control group of patients with standard care. The concept will be also evaluated by qualitative approach (a grounded theory method). The concept of neuro-palliative and rehabilitative care will be implemented within an intervention study in selected inpatient and outpatient health care facilities. Patients in an advanced stage of the disease will be also evaluated according to the International Classification of Functioning, Disability and Health.Findings. Based on qualitative data analysis we will propose the concept of integrated care model combining neurological, rehabilitative and specialist palliative care for patients with selected neurological diseases in different settings of care and services. Patients´ needs related to quality of life will be described by newly created and validated measuring tools before the start of intervention (application of neuro-palliative and palliative approach) and then in the time interval.Conclusion. Based on the results educational materials and a certified course for doctors and health care professionals will be created.

Currently, there has been an increasing concern about the provision of palliative care in non-oncological patients in both professional literature and clinical practice. However, there is not much scientific information on how to provide neurological and palliative care together. The main aim of our research project is to create and verify a concept of neuropalliative and rehabilitative care for patients with selected neurological diseases (Parkinson´s syndrome, motor neuron disease, multiple sclerosis, Huntington?s disease) in an advanced stage of the disease. Further, to evaluate bio-psychosocial and spiritual needs of these patients and their carers in relation to the quality of life using created standardized tools. Methodology. Triangulation of research methods (qualitative and quantitative) will be use. In the first phase we will assess the current situation and identify unmet needs and on their basis a concept of integrated care model will be created. We will use the methods of qualitative research, such as in-depth interviews and focus groups. Selected healthcare professionals (doctors, nurses, and physiotherapists), social workers, selected patients with neurological diseases and their caregivers will participate in the qualitative research. Qualitative data will be analyzed using a method of grounded theory. In the second phase we will develop and validate assessment tools for patients in individual stages of the disease and for their caregivers based on a systematic approach (analysis of theoretical starting points, measurement tools and focus groups). For evaluating the psychometric properties of the questionnaire we will use selected methods, namely content validity, construct validity and reliability. Emphasis will be put on creating assessment tools for evaluation of the specific needs of patients with progressive neurological disease (dyspnoea, pain, nutrition, fatigue, immobility, self-insufficiency, anxiety, depression, dysarthria, and assessment of ethical aspects of care, psychosocial and spiritual needs). In the third phase, within an intervention study, we will evaluate the difference in a saturation of needs and quality of care in patients who have received care in the intervention group as part of an integrated concept of neuro-palliative and rehabilitative care compared with a control group of patients with standard care. The concept will be also evaluated by qualitative approach (a grounded theory method). The concept of neuro-palliative and rehabilitative care will be implemented within an intervention study in selected inpatient and outpatient health care facilities. Patients in an advanced stage of the disease will be also evaluated according to the International Classification of Functioning, Disability and Health.Findings. Based on qualitative data analysis we will propose the concept of integrated care model combining neurological, rehabilitative and specialist palliative care for patients with selected neurological diseases in different settings of care and services. Patients´ needs related to quality of life will be described by newly created and validated measuring tools before the start of intervention (application of neuro-palliative and palliative approach) and then in the time interval.Conclusion. Based on the results educational materials and a certified course for doctors and health care professionals will be created.