AIM:: The aim of our research was to explore the unfulfilled needs of patients with a progressive neurological disease in advanced stage of the illness within the current system of health and social care in the Czech Republic. DESIGN AND SETTING:: Qualitative research (grounded theory) was used to conceptualize the patterns of unmet palliative care needs in Czech Republic. METHODS:: The data collection method comprised individual, in-depth interviews (n = 19) and focus groups (n = 4) where a total of 52 respondents participated (patients with progressive neurological diseases [PNDs], family members, and professionals). RESULTS:: Two main categories of unfulfilled needs were determined (life with the disease, professional help), and they were described in the context of the 3 crucial themes identified in the study-the symptoms of the advanced stage of the disease resulted in substantial reduction of physical self-sufficiency, loss of autonomy, and social isolation; the level of dependence on the support and help of others increased; the patients also highlighted several problems related to health-care services. CONCLUSION:: The unmet needs should be taken into consideration when creating the concept of the neuropalliative and rehabilitation care, including the mental health support plan, because of the emotional, behavioral, and cognitive disorders that frequently occur in the lives of a substantial amount of patients with PND.
- MeSH
- adaptace psychologická * MeSH
- dospělí MeSH
- kvalita života psychologie MeSH
- kvalitativní výzkum MeSH
- lidé středního věku MeSH
- lidé MeSH
- nemoci nervového systému ošetřování psychologie MeSH
- paliativní péče organizace a řízení MeSH
- psychický stres terapie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- zdravotnické služby - potřeby a požadavky * MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
BACKGROUND: Currently, there are no studies aimed at evaluating the quality of life (QoL) of patients with end-stage disease during hospitalization and the factors that influence it. AIM: The aim of the research was to identify predictors of change in the QoL of patients hospitalized due to advanced stage of disease. METHODS: The sample consisted of 140 patients with end-stage disease who were hospitalized on this account. For evaluation of QoL, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) was used. The Hospital Anxiety and Depression Scale and Karnofsky Performance Status questionnaires were used for the assessment of mental and functional status. For the evaluation of predictors of negative change in QoL, a logistic regression analysis was used. RESULTS: During hospitalization, there was a significant deterioration in the scores given for all domains of the functional QLQ-C30 scale, but not the symptomatic scale. Predictors of change in overall QoL detected were marital status, improved functional status, and depression detected on admission to hospital. Gender and age were found to be protective factors against deterioration in overall QoL. CONCLUSION: Sociodemographic characteristics and mental and functional status may be associated with change in QoL of patients with end-stage disease during hospitalization.
- MeSH
- hospitalizace statistika a číselné údaje MeSH
- kvalita života psychologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- péče o umírající psychologie MeSH
- postoj ke smrti * MeSH
- postoj ke zdraví * MeSH
- předpověď MeSH
- průzkumy a dotazníky MeSH
- psychometrie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- umírající psychologie MeSH
- Check Tag
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
BACKGROUND: An important aim of palliative care is to ensure the highest possible quality of life (QoL) for the family members of patients. AIM: We aimed to determine the QoL of family members of hospitalized patients with end-stage disease, as well as differences in QoL based on socio-demographic characteristics and the patient's functional status, psychological distress, and QoL. METHODS: Study participants were 292 family members of terminally ill patients at University Hospital, Ostrava, Czech Republic. To evaluate family members' QoL, we used the Quality of Life in Life-Threatening Illness--Family Carer Version (QOLLTI-F). We used the Hospital Anxiety and Depression Scale (HADS) and the Karnofsky Performance Status (KPS) Scale to assess patients' functional status and psychological distress. RESULTS: A statistically significant difference was found in QoL evaluation based on family members' socio-demographic characteristics in education, employment, and age. A significantly lower QoL score was observed for patients' life partners in six domains. A correlation was found between patients' poorer functional status and family members' lower QoL. We found lower global QoL in family members of patients with depression. CONCLUSION: Family support is a cornerstone of palliative care. Palliative care professionals should focus on at-risk family members--the life partners of patients, the unemployed, younger people, and those whose ill loved one has a poor functional status.
- MeSH
- dospělí MeSH
- Karnofského skóre MeSH
- kvalita života psychologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- pacienti hospitalizovaní MeSH
- paliativní péče psychologie MeSH
- psychiatrické posuzovací škály MeSH
- rodina psychologie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- socioekonomické faktory MeSH
- umírající * MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Česká republika MeSH
BACKGROUND: An important aim of palliative care is to ensure the highest possible quality of life (QoL) for the family members of patients. AIM: We aimed to determine the QoL of family members of hospitalized patients with end-stage disease, as well as differences in QoL based on socio-demographic characteristics and the patient's functional status, psychological distress, and QoL. METHODS: Study participants were 292 family members of terminally ill patients at University Hospital, Ostrava, Czech Republic. To evaluate family members' QoL, we used the Quality of Life in Life-Threatening Illness--Family Carer Version (QOLLTI-F). We used the Hospital Anxiety and Depression Scale (HADS) and the Karnofsky Performance Status (KPS) Scale to assess patients' functional status and psychological distress. RESULTS: A statistically significant difference was found in QoL evaluation based on family members' socio-demographic characteristics in education, employment, and age. A significantly lower QoL score was observed for patients' life partners in six domains. A correlation was found between patients' poorer functional status and family members' lower QoL. We found lower global QoL in family members of patients with depression. CONCLUSION: Family support is a cornerstone of palliative care. Palliative care professionals should focus on at-risk family members--the life partners of patients, the unemployed, younger people, and those whose ill loved one has a poor functional status.
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- MeSH
- dospělí MeSH
- Karnofského skóre MeSH
- kvalita života * MeSH
- lidé středního věku MeSH
- lidé MeSH
- pacienti hospitalizovaní MeSH
- paliativní péče * psychologie MeSH
- psychiatrické posuzovací škály MeSH
- rodina * psychologie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- socioekonomické faktory MeSH
- umírající * MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Geografické názvy
- Česká republika MeSH
