Palliative Care Knowledge and Attitudes Among Patients With Neuroinflammatory Diseases.

Background: Neuroinflammatory diseases are progressive leading to loss of function and disability. Although palliative care (PC) utilization has increased globally, it has scarcely increased in neurology. Objectives: To explore PC attitudes and knowledge among patients with neuroinflammatory diseases, such as multiple sclerosis, neuromyelitis optica spectrum disorder, and myelin oligodendrocyte glycoprotein antibody-associated disease. Methods: A cross-sectional 1-year study was conducted using the Palliative Care Knowledge Scale (PaCKS) and the PC Health Information National Trends Survey (HINTS). Murray's transition theory guided this study, which integrates palliative services including decision making, communication, and coordinated care. Results: The majority of study patients were female (69%) (N = 86) and White (79%). Forty-two percent indicated that they had never heard about PC, 46% said that they knew a little bit about PC, and 12% said that they knew a lot about PC. Fifty percent of patients knew the goals of PC and had knowledge about PC services. Forty-four percent to 60% agreed that PC goals include helping friends and family to cope with a patient's illness, offering social and emotional support, and managing pain and other symptoms. Patients who self-reported being familiar with PC performed significantly better on the PaCKS than those unfamiliar with PC (p < 0.001), and those who self-reported moderate or severe memory loss performed significantly worse on the PaCKS than those with mild memory loss (p = 0.027). There was an association between higher education and PC knowledge and between patients' PaCKS scores and their self-reported HINTS PC knowledge. Conclusions: Patients have partial PC knowledge. Patients require education about PC early in their disease along their illness trajectory.

The Relationship Between Psychological and Physical Secondary Conditions and Family Caregiver Burden in Spinal Cord Injury: A Correlational Study.

Background: Caregiver burden (CB) is a consequence of providing care to people with spinal cord injury (SCI). However, there is a lack of clarity about the influence of secondary conditions of care recipients on family caregivers. Secondary conditions refer to the physical and psychological complications that can occur after SCI and lead to increased hospitalization and reduced functionality, quality of life, and social participation. Objective: To assess the impact of physical and psychological secondary conditions of people with SCI on the perceived burden of family caregivers. Methods: A multicenter, cross-sectional study of 56 dyads of family caregivers and individuals with SCI in two urban spinal units in Italy and Ireland. Care recipients completed a toolset consisting of demographic information and assessments of functional, physical, and psychological health. Caregivers completed a multidimensional measure of CB. Bivariate data analysis was used. Results: No significant differences between centers were identified. CB was found to be related to physical secondary conditions and functional independence but not to mental health of care recipients. Bladder dysfunction and urinary tract infections influenced all dimensions of CB, whereas pressure injuries influenced only the time-dependent dimension. Level and completeness of injury and duration of caregiving increased CB. Conclusion: Findings indicate the value of a reduction in secondary conditions not just for individuals with SCI but also for their family caregivers. To reduce the individual and family burden of secondary conditions, a two-pronged, multidimensional approach, focusing on self-management for care recipients and psychoeducational support for caregivers, is required.

Translocation (2;8)(q35;q13): a recurrent abnormality in congenital embryonal rhabdomyosarcoma.

We report a case of congenital embryonal rhabdomyosarcoma (ERMS), a rare form of rhabdomyosarcoma, featuring a karyotype with a t(2;8)(q35;q13) in a 2-week-old male infant. This is the third reported case of congenital ERMS with cytogenetic findings. The previous cases also showed a similar or possibly identical translocation. We postulate that the t(2;8)(q35;q13) is a specific abnormality in congenital ERMS, and that it involves the PAX3 gene at 2q35 and a non-yet identified gene at 8q13.