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OBJECTIVES: The aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate associations between bereaved family members' preferences and individual characteristics, health-related quality of life, as well as associations with their perception of the quality of care that the ill person had received, the ill person's preferred place of death and involvement in decision-making about care. METHODS: A cross-sectional survey with bereaved family members, employing descriptive statistics and multinominal logistic regression analyses. RESULTS: Of the 485 participants, 70.7% were women, 36.1% were ≥70 years old, 34.5% were partners and 51.8% were children of the deceased. Of the bereaved family members, 52% preferred home for place of end-of-life care and 43% for place of death. A higher likelihood of preferring inpatient palliative care was associated with being female and having higher education, whereas a lower likelihood of preferring a nursing home for the place of care and death was associated with higher secondary or higher education. Partners were more likely to prefer hospital for place of care and nursing home for place of death. CONCLUSIONS: Home was the most preferred place for end-of-life care and death. Bereaved people's experiences of end-of-life care may impact their preferences, especially if they had a close relationship, such as a partner who had a higher preference for nursing home and hospital care. Conversations about preferences for the place of care and death considering previous experience are encouraged.
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BACKGROUND AND PURPOSE: Symptomatic arrhythmia is common following radiotherapy for non-small cell lung cancer (NSCLC), frequently resulting in morbidity and hospitalization. Modern treatment planning technology theoretically allows sparing of cardiac substructures. Atrial fibrillation (AF) comprises the majority of post-radiotherapy arrhythmias, but efforts to prevent this cardiotoxicity have been limited as the causative cardiac substructure is not known. In this study we investigated if incidental radiation dose to the pulmonary veins (PVs) is associated with AF. MATERIAL AND METHODS: A single-centre study of patients completing contemporary (chemo)radiation for NSCLC, with modern planning techniques. Oncology, cardiology and death records were examined, and AF events were verified by a cardiologist. Cardiac substructures were contoured on planning scans for retrospective dose analysis. RESULTS: In 420 eligible patients with NSCLC treated with intensity-modulated (70%) or 3D-conformal (30%) radiotherapy with a median OS of 21.8 months (IQR 10.8-35.1), there were 26 cases of new AF (6%). All cases were grade 3 except two cases of grade 4. Dose metrics for both the left (V55) and right (V10) PVs were associated with the incidence of new AF. Metrics remained statistically significant after accounting for the competing risk of death and cardiovascular covariables for both the left (HR 1.02, 95%CI 1.00-1.03, p = 0.005) and right (HR 1.01 (95%CI 1.00-1.02, p = 0.033) PVs. CONCLUSION: Radiation dose to the PVs during treatment of NSCLC was associated with the onset of AF. Actively sparing the PVs during treatment planning could reduce the incidence of AF during follow-up, and screening for AF may be warranted for select cases.
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Fibrilación Atrial , Carcinoma de Pulmón de Células no Pequeñas , Neoplasias Pulmonares , Venas Pulmonares , Humanos , Fibrilación Atrial/diagnóstico , Carcinoma de Pulmón de Células no Pequeñas/radioterapia , Estudios Retrospectivos , Neoplasias Pulmonares/radioterapia , Resultado del TratamientoRESUMEN
BACKGROUND: Research shows that undocumented migrants have difficulties in accessing healthcare. Act 2013:407 came into force in 2013 and entitled undocumented migrants to healthcare that cannot be deferred. To date, studies about undocumented migrants' access to care in Sweden and the impact of Act 2013:407 are sparse. Hence, the aim of this study was to describe professionals' experiences of access to healthcare for undocumented migrants in Sweden and the impact of Act 2013:407. METHODS: A qualitative design with semi-structured interviews was employed. Nine interviews were carried out in 2015 with nurses at two NGO healthcare centres for undocumented migrants - and an additional seven interviews in 2022 with staff at an NGO healthcare centre for undocumented migrants and personnel at a regional health and medical care administration. Interpretive description was used for the analyses. ETHICAL CONSIDERATIONS: Permission to carry out the study was obtained from managers at the participating NGOs and the regional health and medical care administration. Participants received verbal and written information about the study, and informed consent was obtained from all participants. FINDINGS: Six categories emerged from the analysis: Changes since the Act was introduced, General problems with healthcare access, Care for undocumented migrants - politics and social economy, Lack of knowledge, 'Healthcare that cannot be deferred' and Being an undocumented migrant. CONCLUSION: Undocumented migrants' social needs are as great as their needs for healthcare. Healthcare staff are burdened with healthcare cost considerations which affect their judgement of care provision and prioritization. Healthcare staff attitudes towards undocumented migrants affect their access to healthcare. Undocumented migrants in need of healthcare are especially vulnerable due to their legal status, being ill and the fear of being reported and deported. To assure undocumented migrants' access to healthcare and maintain healthcare ethics, the only possible solution is to provide healthcare based on needs.
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OBJECTIVES: Hearing loss is a clinical symptom, frequently mentioned in the context of mitochondrial disease. With no cure available for mitochondrial disease, supportive treatment of clinical symptoms like hearing loss is of the utmost importance. The aim of this study was to summarize current knowledge on hearing loss in genetically proven mitochondrial disease in children and deduce possible and necessary consequences in patient care. METHODS: Systematic literature review, including Medline, Embase, and Cochrane library. Review protocol was established and registered prior to conduction (International prospective register of systematic reviews-PROSPERO: CRD42020165356). Conduction of this review was done in accordance with MOOSE criteria. RESULTS: A total of 23 articles, meeting predefined criteria and providing sufficient information on 75 individuals with childhood onset hearing loss was included for analysis. Both cochlear and retro-cochlear origin of hearing loss can be identified among different types of mitochondrial disease. Analysis was hindered by inhomogeneous reporting and methodical limitations. CONCLUSION: Overall, the findings do not allow for a general statement on hearing loss in children with mitochondrial disease. Retro-cochlear hearing loss seems to be found more often than expected. A common feature appears to be progression of hearing loss over time. However, hearing loss in these patients shows manifold characteristics. Therefore, awareness of mitochondrial disease as a possible causative background is important for otolaryngologists. Future attempts rely on standardized reporting and long-term follow-up. LEVEL OF EVIDENCE: NA Laryngoscope, 132:2459-2472, 2022.
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Sordera , Pérdida Auditiva Sensorineural , Pérdida Auditiva , Enfermedades Mitocondriales , Humanos , Pérdida Auditiva/diagnóstico , Enfermedades Mitocondriales/complicacionesRESUMEN
Objective: To illustrate the merit of hydrops imaging during clinical workup of dizziness and balance disorders. Background: Ever since the first description of in-vivo endolymphatic hydrops imaging in 2007, this diagnostic tool has been implemented in an increasing number of centers. The more experience in its clinical application is gathered, the more it is possible to critically assess its potential value for the diagnostic workup. This article intends to provide information about the experience of handling and utilization of endolymphatic hydrops imaging in one of the first centers in Austria. Methods: Retrospective analysis and review of clinical cases. Results: Based on our experience of endolymphatic hydrops imaging (EHI), which was established in cooperation between our departments of radiology and otorhinolaryngology in 2017, we have exclusively used intratympanic application of a contrast agent prior to magnetic resonance imaging, as this approach provides high quality imaging results. In 42.6% of cases, EHI could lead to the diagnosis of MD or HED. Since precise vestibular examination is still necessary, EHI is not a tool to replace the clinical examination but rather to add significantly to the interpretation of the results. Conclusion: Endolymphatic hydrops imaging represents a valuable, safe and well-applicable tool for evaluating cases with inconclusive clinical results. However, its potential additional diagnostic benefits rely on a correct indication based on prior thorough vestibular investigations.
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BACKGROUND: It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members' experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. METHODS: A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital between August 2016-April 2017. RESULTS: Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members' comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person's death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. CONCLUSIONS: Family members' experiences of support were partly related to whether the ill person's care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members' experiences of support. Family members' difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.
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Aflicción , Cuidado Terminal , Estudios Transversales , Familia , Femenino , Pesar , Humanos , Recién Nacido , Masculino , Estudios RetrospectivosRESUMEN
OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective. METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim. RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40). SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.
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Aflicción , Cuidado Terminal , Humanos , Femenino , Adulto Joven , Adulto , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Masculino , Estudios Retrospectivos , Cuidados Paliativos , Familia , Muerte , ComunicaciónRESUMEN
Several clinical trials address demyelinating diseases via transplantation of mesenchymal stromal cells (MSCs). Published reports detail that administration of MSCs in patients may provide a beneficial immunomodulation, and that factors secreted by MSCs are potent inducers of oligodendrogenesis. Dimethylsulfoxide (DMSO) is widely used in life science and medicine as solvent, vehicle or cryoprotectant for cells used in transplantation. Importantly, most transplantation protocols do not include the removal of DMSO before injecting the cell suspension into patients. This indifferent application of DMSO is coming under increasing scrutiny following reports investigating its potential toxic side-effects. While the impact of DMSO on the central nervous system (CNS) has been partially studied, its effect on oligodendrocytes and oligodendrogenesis has not been addressed yet. Consequently, we evaluated the influence of DMSO on oligodendrogenesis, and on the pro-oligodendrogenic effect of MSCs' secreted factors, using adult rat neural stem and progenitor cells (NSPCs). Here, we demonstrate that a concentration of 1% DMSO robustly suppressed oligodendrogenesis and drove the fate of differentiating NSPCs toward astrogenesis. Furthermore, the pro-oligodendrogenic effect of MSC-conditioned medium (MSCCM) was also nearly completely abolished by the presence of 1% DMSO. In this condition, inhibition of the Erk1/2 signal transduction pathway and high levels of Id2 expression, a specific inhibitor of oligodendrogenic differentiation, were detected. Furthermore, inflammatory demyelinating diseases may even potentiate the impact of DMSO on oligodendrogenesis. Our results demonstrate the imperative of considering the strong anti-oligodendrogenic activity of DMSO when designing future clinical trial protocols.
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Multiple sclerosis (MS) is a demyelinating disease of the central nervous system (CNS) that leads to severe neurological deficits. Due to their immunomodulatory and neuroprotective activities and their ability to promote the generation of oligodendrocytes, mesenchymal stem cells (MSCs) are currently being developed for autologous cell therapy in MS. As aging reduces the regenerative capacity of all tissues, it is of relevance to investigate whether MSCs retain their pro-oligodendrogenic activity with increasing age. We demonstrate that MSCs derived from aged rats have a reduced capacity to induce oligodendrocyte differentiation of adult CNS stem/progenitor cells. Aging also abolished the ability of MSCs to enhance the generation of myelin-like sheaths in demyelinated cerebellar slice cultures. Finally, in a rat model for CNS demyelination, aging suppressed the capability of systemically transplanted MSCs to boost oligodendrocyte progenitor cell (OPC) differentiation during remyelination. Thus, aging restricts the ability of MSCs to support the generation of oligodendrocytes and consequently inhibits their capacity to enhance the generation of myelin-like sheaths. These findings may impact on the design of therapies using autologous MSCs in older MS patients.
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Envejecimiento/fisiología , Células Madre Mesenquimatosas/fisiología , Oligodendroglía/fisiología , Remielinización/fisiología , Animales , Células Cultivadas , Enfermedades Desmielinizantes/fisiopatología , Modelos Animales de Enfermedad , Femenino , Masculino , Ratas Endogámicas F344 , Ratas Sprague-Dawley , Técnicas de Cultivo de TejidosRESUMEN
BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members. METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden. RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer. CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.
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OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member. METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording. RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable. SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.
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Aflicción , Cuidadores/psicología , Familia/psicología , Encuestas y Cuestionarios , Cuidado Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados , Suecia , Traducciones , Adulto JovenRESUMEN
The role of the neurovascular niche in CNS myelin regeneration is incompletely understood. Here, we show that, upon demyelination, CNS-resident pericytes (PCs) proliferate, and parenchymal non-vessel-associated PC-like cells (PLCs) rapidly develop. During remyelination, mature oligodendrocytes were found in close proximity to PCs. In Pdgfbret/ret mice, which have reduced PC numbers, oligodendrocyte progenitor cell (OPC) differentiation was delayed, although remyelination proceeded to completion. PC-conditioned medium accelerated and enhanced OPC differentiation in vitro and increased the rate of remyelination in an ex vivo cerebellar slice model of demyelination. We identified Lama2 as a PC-derived factor that promotes OPC differentiation. Thus, the functional role of PCs is not restricted to vascular homeostasis but includes the modulation of adult CNS progenitor cells involved in regeneration.
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Sistema Nervioso Central/fisiología , Oligodendroglía/fisiología , Pericitos/fisiología , Animales , Diferenciación Celular/fisiología , Células Cultivadas , Sistema Nervioso Central/citología , Sistema Nervioso Central/metabolismo , Enfermedades Desmielinizantes , Humanos , Ratones , Regeneración Nerviosa/fisiología , Oligodendroglía/citología , Oligodendroglía/metabolismo , Pericitos/citología , Pericitos/metabolismoRESUMEN
OBJECTIVES: Infants admitted to a neonatal intensive care unit (NICU) are routinely subject to a range of painful procedures. However, pain assessments in NICUs are under-utilized due to a lack of a gold standard pain measure. In this study we assessed the psychometric properties and clinical utility of the COVERS and Pain Assessment Tool (PAT), in a neonatal unit. METHODS: We had 72 nurses use the scales to assess pain at baseline and during a heel-lance procedure in 80 NICU infants. An independent research observer and the infant's mother also completed pain ratings. After the study, we assessed nurse preference and clinical utility ratings for both scales. RESULTS: The COVERS had satisfactory internal consistency at baseline (Cronbach α=0.74) and heel lance (α=0.78), as did the PAT (baseline α=0.79, heel lance α=0.85). Intraclass correlation coefficients demonstrated good inter-rater reliability at baseline and heel lance, respectively, for both the COVERS (0.82 and 0.80) and the PAT (0.83 and 0.86). There were strong associations between total scores on the 2 scales at baseline (r=0.81, P<0.001) and heel lance (r=0.91, P<0.001), between researcher's ratings and total COVERS (ρ=0.75, P<0.001) and PAT scores (ρ=0.69, P<0.001), and between maternal ratings and total COVERS (r=0.74, P<0.05) and PAT scores (r=0.65, P<0.05). Both scales were sensitive to pain and nonpain events. Reliability and validity was mostly upheld across gestational age. Most nurses preferred the COVERS (52%) to the PAT (16%), and 32% had no preference. DISCUSSION: This study builds on evidence for the COVERS scale and the PAT; both scales were reliable and valid measures of acute pain in neonates as premature as 24-week gestational age.
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Cuidado Intensivo Neonatal/métodos , Dimensión del Dolor/métodos , Dolor/diagnóstico , Estudios de Factibilidad , Femenino , Talón , Administración Hospitalaria , Humanos , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Masculino , Madres/psicología , Enfermeras y Enfermeros/psicología , Percepción del Dolor , Psicometría , Reproducibilidad de los ResultadosRESUMEN
OBJECTIVE: Providing reassurance is often a critical component of the medical consultation. An important area that has not been addressed in the literature is how delay in providing the results of medical tests affects patient reassurance. In this study we investigated whether the early provision of a normal diagnostic result immediately following medical testing improves patient reassurance compared to results provided 4 weeks later. METHOD: We conducted a longitudinal randomized controlled trial and 1-month follow-up. Fifty-one cardiology outpatients with no known cardiac pathology referred for an echocardiogram test were randomized following normal test results to receive their test results from a cardiologist either immediately following testing or 4 weeks later. Measures of symptoms, anxiety, and health perceptions were taken prior to diagnostic testing. Reassurance was assessed immediately after the results were provided and 1 month later. RESULTS: Data analysis showed that the provision of early results had no impact on patient reassurance. Cardiac anxiety was strongly associated with lower reassurance; patients who were more anxious about their heart were significantly less reassured by a normal test result, both immediately following feedback and 1 month later. CONCLUSIONS: The early provision of test results had no impact on patient reassurance. The study suggests the identification and targeting of patients high in cardiac anxiety may be a better method for improving reassurance than reducing the waiting time for results following medical testing.
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Ansiedad/prevención & control , Ansiedad/psicología , Dolor en el Pecho/psicología , Ecocardiografía/psicología , Retroalimentación , Cardiopatías/psicología , Adulto , Cardiólogos , Dolor en el Pecho/diagnóstico , Femenino , Cardiopatías/diagnóstico , Humanos , Masculino , Persona de Mediana Edad , Nueva Zelanda , Pacientes Ambulatorios , Relaciones Profesional-Paciente , Encuestas y CuestionariosRESUMEN
Speculations on the involvement of hippocampal neurogenesis, a form of neuronal plasticity, in the aetiology of depression and the mode of action of antidepressive therapies, started to arise more than a decade ago. But still, conclusive evidence that adult neurogenesis contributes to antidepressive effects of pharmacological and physical therapies has not been generated yet. This review revisits recent findings on the close relation between the mode(s) of action of electroconvulsive therapy (ECT), a powerful intervention used as second-line treatment of major depression disorders, and the neurogenic response to ECT. Following application of electroconvulsive shocks, intricate interactions between neurogenesis, angiogenesis, and microglia activation, the hypothalamic-pituitary-adrenal axis and the secretion of neurotrophic factors have been documented. Furthermore, considering the fact that neurogenesis strongly diminishes along aging, we investigated the response to electroconvulsive shocks in young as well as in aged cohorts of mice.