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Psychometric validation and cross-cultural adaptation of the Integrated Palliative care Outcome Scale in Polish (IPOS-Pol).

The study aimed to assess the reliability and validity of the IPOS-Pol for patient self-reporting. Patients (>18 years of age) with advanced cancer admitted to three palliative care centers (inpatient units and home-based) were recruited to a multicenter, cross-sectional, observational, prospective study. Participants provided responses to the IPOS-Pol Patient version and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care (EORTC QLQ-C15-PAL) Polish version at baseline (T1) and four to seven days later (T2). We assessed test-retest reliability, internal consistency, and construct validity of the tool. One hundred and eighty patients were included. Test-retest reliability demonstrated no statistically significant differences in the average outcomes of the IPOS-Pol between T1 and T2 (27.2 ± 9.2 vs. 26.5 ± 8.7; p > 0.05). The intra-class correlation coefficient between T1 and T2 was r = 0.83 (p < 0.0001), the intra-class correlation coefficient for test-retest reliability of the IPOS-Pol items ranged from 0.63 to 0.84 (p < 0.0001), and the Cronbach's α coefficient for internal consistency was 0.773. The correlation coefficient between the IPOS-Pol and EORTC QLQ-C15-PAL total score was 0.79 (p < 0.001). The patient version of the Polish adaptation of IPOS is a valid and reliable outcome measure for assessing symptoms and concerns of individuals receiving palliative care, as well as the quality of care provided.

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Open Access
Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives' Survey within Seven Countries.

BackgroundRecognized disparities in quality of end‐of‐life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries.Materials and MethodsA postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i‐CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life.ResultsOf 1,683 potential participants, 914 i‐CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect “always” or “most of the time”; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase.ConclusionThis is the first study assessing quality of care for dying cancer patients from the bereaved relatives’ perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732).Implications for PracticePrevious studies have shown that bereaved relatives’ views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.

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Open Access
Quantitative assessment of retinal thickness and vessel density using optical coherence tomography angiography in patients with Alzheimer's disease and glaucoma.

PurposeAssessment and a direct comparison of retinal vessel density with the thickness of inner retinal layer (IRL) and outer retinal layer (ORL) in the same regions of the macula in subjects with Alzheimer’s disease (AD) and primary open-angle glaucoma (POAG).MethodsWe analyzed data from 48 eyes of healthy control (HC) participants, 71 eyes with POAG, and 49 eyes of AD patients. Ophthalmic examination included optical coherence tomography (OCT) imaging to measure IRL and ORL thickness and OCT angiography (OCTA) in the same region for the imaging of vessel density in the superficial vascular plexus (SVP) and deep vascular plexus (DVP) of the retina. A direct comparison of vessel density and retinal layers thickness, which different dynamic ranges, was obtained by normalizing values as percentage losses.ResultsPatients with AD presented significantly greater losses of vascular density in the DVP and ORL thickness compared to POAG (p <0.001), but percentage losses of vessel density in SVP and IRL thickness were considerable in POAG compared to AD eyes (p<0.001). Positive associations among presence of AD were observed primarily in outer retina where a 1% decrease of ORL thickness was associated with about 24–29% increase in odds of the presence of AD. According to OCTA measurements, a 1% decrease of vessel density in DVP was positively associated with a 4–9% increase in odds of the presence of AD. In POAG positive associations among presence of disease were observed only in inner retina where 1% loss of IRL thickness and a 1% loss of vessel density in the SVP were positively associated with a 13–23% increase in risk of presence of the disease.ConclusionsAnalysis of ORL thickness and vessel density in DVP could potentially improve diagnostic capabilities and may provide a valuable approach for predicting of AD.

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Open Access
Comparison of Retinal Microvasculature in Patients With Alzheimer's Disease and Primary Open-Angle Glaucoma by Optical Coherence Tomography Angiography.

Comparison of retinal microvasculature within the macula and the optic nerve head in the eyes of patients with Alzheimer's disease (AD), primary open-angle glaucoma (POAG), and in a healthy control (HC) group, using optical coherence tomography angiography (OCTA). In this cross-sectional study, 27 patients with AD, 27 with POAG, and 27 healthy controls were enrolled. The Mini-Mental State Examination test was used to assess cognitive function. Ophthalmic examination included OCTA, which was used for the imaging of vascular flow within the layer of radial peripapillary capillaries (RPCs), and also in the superficial vascular plexus (SVP) and deep vascular plexus (DVP) of the retina. In the AD group, the density of vessels in DVP was significantly reduced and the foveal avascular zone was increased when compared to POAG and HC groups (P < 0.001). Patients with POAG had a significantly reduced vessel density in RPCs and SVP as compared to AD and HC groups (P < 0.001). The average thickness of peripapillary retinal nerve fiber layer was correlated with the vessel density in SVP in patients with POAG (Pearson's r = 0.66; P = 0.0002) and was significantly lower in POAG and AD groups than in the HC group (P < 0.001). AD and POAG are neurodegenerative diseases associated with apoptosis of nerve cells and impairment of microvasculature. Despite the fact that in both diseases there are abnormalities of the entire retinal vascular system, significant microcirculatory impairment in POAG patients affects superficial vessels, whereas in AD patients it affects vessels located in the deeper retinal layers.

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Open Access
Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying.

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Open Access
Early effect of thalamotomy on cognitive function in patients with Parkinson’s disease

Abstract Thalamotomy is a neurosurgical procedure used in the treatment of advanced Parkinson’s disease (PD). The aim of our research is to evaluate the early impact of a lesion in the ventrointermedial nucleus (VIM) of the thalamus on cognitive and motor function in people with PD. Sixty patients who qualified for right- or left-sided VIM thalamotomy were involved in the study. The cognitive and motor functions of each patient were assessed both prior to and following the surgical procedure. Twenty-nine PD patients without ablative treatment were qualified for the comparison group, and 57 neurologically healthy individuals were assigned to the control group. The following tests were carried out: Mini Mental State Examination, Benton Visual Retention Test, Stroop Color and Word Test, Trail Making Test A&amp;B, and Rey Auditory Verbal Learning Test. Statistically significant differences were found in reaction time, visual-spatial working memory, auditory-verbal memory, and overall level of cognitive function when comparing the results of tests carried out before and after thalamotomy and when comparing patients who had undergone surgery with untreated or healthy individuals. In patients with right-sided and left-sided thalamotomy differences were also found in the mean number of perseverative errors and recalled words.

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