The high cost of care and limited evidence on cost-effective strategies for Lewy body dementia: systematic review of evidence.

BACKGROUND: Lewy body dementia (LBD) is a prevalent yet frequently underdiagnosed form of dementia, accounting for up to 15% of all dementia cases. AIMS: This study aims to increase awareness and advocacy for LBD by gathering and critically assessing the economic evidence, including the cost of illness and cost-effectiveness of interventions for managing LBD. METHOD: A systematic literature review was undertaken with EMBASE, Medline, CINAHL, PsycINFO, NHS Economic Evaluation Database and EconLit. This search was supplemented by grey literature on Google Scholar and reviewing the reference lists of identified studies. The papers included in the review were published between 2008 and 2023, and involved participants with LBD (dementia with Lewy bodies or Parkinson's disease dementia), which either addressed the cost of illness or conducted an economic evaluation. RESULTS: Thirteen papers were included, comprising ten cost-of-illness studies and three economic evaluations. The cost of LBD tends to be higher than that of other forms of dementia, such as Alzheimer's disease, and these costs escalate more steeply as the disease progresses. These cost differences may not be solely influenced by the subtype of dementia, but possibly also by patient characteristics like physical and cognitive abilities. Cost-effectiveness of potential interventions for LBD is limited. CONCLUSIONS: Despite numerous drug trials and other interventions for dementia, very few have targeted LBD, let alone explored the cost-effectiveness of such therapies for LBD. This disparity highlights the urgent need for cost-effective strategies and interventions targeting LBD. We propose the establishment of universally accepted standards for LBD research.

Improving pain-related communication in children with autism spectrum disorder and intellectual disability.

The communication of pain in individuals with co-morbid Autism Spectrum Disorder and intellectual disability (ASD-ID) is largely unexplored. The communication deficits associated with ASD-ID can result in nonverbal behavior such as self-injurious behavior, aggression, irritability, and reduced activity as a means to communicate that pain is present. The objective of this study was to determine whether a behavioral-based educational intervention could increase the pain-related communication of children with ASD-ID who experience pain frequently. Specifically, the study aimed to determine if children with ASD-ID can label the location of their pain or quantify pain severity and request pain relief. The sample included three children with ASD-ID who experienced pain frequently. The intervention utilized educational materials and behavioral reinforcements and the intervention was conducted using a series of case studies. Pain was assessed daily by caregivers using the Non-Communicating Children's Pain Checklist-Postoperative (NCCPC-PV) and the ability of the individual to identify and express pain was recorded using the Wong Baker FACES Pain (WBFPS) Scale. Challenging behavior was recorded based on frequency count. The results indicated that all participants displayed the ability to independently respond to a question about how they were feeling by vocalizing the location of pain or indicating their level of pain on the WBFPS and requesting pain relief. The results suggest a role for behavioral-based educational interventions to promote communication of pain in people with ASD-ID.

Developing a core outcome set (COS) for Dementia with Lewy bodies (DLB).

Background: Dementia with Lewy bodies (DLB) is an important cause of dementia with a range of clinical manifestations, including motor, neuropsychiatric, and autonomic symptoms. Compared with more common forms of dementia such as Alzheimer's disease, DLB has been the focus of significantly fewer treatment studies, often with diverse outcome measures, making comparison and clinical implementation difficult. A core outcome set (COS) can address this by ensuring that data are comparable, relevant, useful, and usable for making the best healthcare decisions. Methods: Using a multi-stage approach, development of the DLB-COS will include the following stages: (1) A systematic review, following PRISMA guidelines to create an initial long list of outcomes; (2) A two-round online Delphi including clinicians, scientists, policymakers, and individuals with lived experience of DLB and their representatives; (3) An online consensus meeting to agree on the final core list of outcomes (the final DLB-COS) for use in research and clinical practice; (4) A systematic review to identify appropriate measurement instruments for the DLB-COS outcomes; (5) A final consensus meeting of the professional stakeholders who attended the online consensus meeting to agree on the instruments that should be used to measure the outcomes in the DLB-COS; and (6) Global dissemination. Discussion: This is a multi-stage project to develop a COS to be used in treatment trials for DLB. A DLB-COS will ensure the selection of relevant outcomes and will identify the instruments to be used to measure DLB globally. Keywords: Dementia, Dementia with Lewy Bodies, Core Outcome Set, Delphi, Systematic Review, Ageing, Cognition, Memory.

Older Users of a Befriending Service in Ireland and the Maintenance of Personal Autonomy during the COVID-19 Pandemic.

In the Republic of Ireland (RoI), COVID-19 public health guidelines have been most restrictive for people aged 70 and over. Such individuals are most likely to avail of befriending services offered by a network of Irish organisations. The aim of this study was to explore the impact of COVID-19 guidelines on befriending service users, and to develop recommended adaptations to befriending services compatible with such guidelines. A qualitative constructivist grounded theory approach was taken to the study design and analysis, using semi-structured interviews to collect data from 11 participants by telephone between May 2020 and January 2021. Results show a grounded theory describing how older users of a befriending service maintained their personal autonomy in the face of strict government guidelines. Participants described living life as usual, often contravening guidelines, and how they chose to adapt to the situation, yielding both positive and negative outcomes. Some potential adaptations were discussed to the befriending service (including a preserved focus on the social and emotional functions of the befriending relationship, and the accommodation of collaborative decision making about communicative alternatives), but ultimately it was made clear that participants would tailor the services to their own preferences. Results have implications for befriending service design and delivery, and for public health officials who wish to support the health of older adults during the COVID-19 pandemic.

Anomalous origin of the left brachiocephalic artery in the right aortic arch: Is there a method to the madness?

The anomalous origin of the left brachiocephalic artery in a right sided aortic arch is a rare vascular ring which might lead to esophageal compression. The exact embryological origin of this anomaly is still widely debated. We present an infant who presented with esophageal compression symptoms and review the various hypotheses about the embryological origin of this anomaly.