Exploring the Experiences of Parents Whose Child has Received a Diagnosis of Autistic Spectrum Disorder in Adulthood

There is a growing trend of adult diagnosis of Autism Spectrum Disorder (ASD). Research has found that diagnosis can prompt a process of sense-making which may be disrupted by lack of post-diagnostic support. Given the continued involvement of many parents in supporting their adult son or daughter with ASD, it is vital to understand their experiences to meet their needs in adapting to the diagnosis. Eleven parents of recently diagnosed adults participated in semi-structured interviews which were analysed thematically. Findings demonstrate that the new knowledge of diagnosis facilitates changes in attributions, interactions and relationships, but can result in unmet emotional and relational support needs. Findings are relevant to those involved in adult diagnosis, and the provision of post-diagnostic support.

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

Background There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support. Methods We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel. Results Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time. Conclusions Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.

Creating a Diagnostic Assistance System for Diseases in Kampo Medicine

The aim of this study was to propose a method to assess images of the tongue captured using a polarized light camera for diagnostic use in Kampo medicine. Glossy and non-glossy images of the tongue were captured simultaneously using a polarizing camera and a polarizing plate. Data augmentation was performed by modulating the color and gloss, resulting in an increase in the number of images from 11 to 275. To create a data set, the values for which diseases were evaluated by Kampo doctors for all tongue images were taken as the correct values and combined with the features extracted from the tongue images. Using this data set, we constructed a diagnostic support module to evaluate diseases. The resulting mean absolute error of the assessment was 0.44 for qi deficiency, 0.42 for blood deficiency, 0.33 for blood stagnation, 0.36 for yin deficiency, and 0.55 for fluid stagnation, suggesting that the diagnostic assistance module was accurate, and our proposed learning and data augmentation methods were effective.

Assessing Parkinson’s Disease at Scale Using Telephone-Recorded Speech: Insights from the Parkinson’s Voice Initiative

Numerous studies have reported on the high accuracy of using voice tasks for the remote detection and monitoring of Parkinson’s Disease (PD). Most of these studies, however, report findings on a small number of voice recordings, often collected under acoustically controlled conditions, and therefore cannot scale at large without specialized equipment. In this study, we aimed to evaluate the potential of using voice as a population-based PD screening tool in resource-constrained settings. Using the standard telephone network, we processed 11,942 sustained vowel /a/ phonations from a US-English cohort comprising 1078 PD and 5453 control participants. We characterized each phonation using 304 dysphonia measures to quantify a range of vocal impairments. Given that this is a highly unbalanced problem, we used the following strategy: we selected a balanced subset (n = 3000 samples) for training and testing using 10-fold cross-validation (CV), and the remaining (unbalanced held-out dataset, n = 8942) samples for further model validation. Using robust feature selection methods we selected 27 dysphonia measures to present into a radial-basis-function support vector machine and demonstrated differentiation of PD participants from controls with 67.43% sensitivity and 67.25% specificity. These findings could help pave the way forward toward the development of an inexpensive, remote, and reliable diagnostic support tool for PD using voice as a digital biomarker.

Should electronic differential diagnosis support be used early or late in the diagnostic process? A multicentre experimental study of Isabel

BackgroundDiagnostic errors unfortunately remain common. Electronic differential diagnostic support (EDS) systems may help, but it is unclear when and how they ought to be integrated into the diagnostic process.ObjectiveTo explore how much EDS improves diagnostic accuracy, and whether EDS should be used early or late in the diagnostic process.Setting6 Canadian medical schools. A volunteer sample of 67 medical students, 62 residents in internal medicine or emergency medicine, and 61 practising internists or emergency medicine physicians were recruited in May through June 2020.InterventionParticipants were randomised to make use of EDS either early (after the chief complaint) or late (after the complete history and physical is available) in the diagnostic process while solving each of 16 written cases. For each case, we measured the number of diagnoses proposed in the differential diagnosis and how often the correct diagnosis was present within the differential.ResultsEDS increased the number of diagnostic hypotheses by 2.32 (95% CI 2.10 to 2.49) when used early in the process and 0.89 (95% CI 0.69 to 1.10) when used late in the process (both p<0.001). Both early and late use of EDS increased the likelihood of the correct diagnosis being present in the differential (7% and 8%, respectively, both p<0.001). Whereas early use increased the number of diagnostic hypotheses (most notably for students and residents), late use increased the likelihood of the correct diagnosis being present in the differential regardless of one’s experience level.Conclusions and relevanceEDS increased the number of diagnostic hypotheses and the likelihood of the correct diagnosis appearing in the differential, and these effects persisted irrespective of whether EDS was used early or late in the diagnostic process.

413 - Delivering tailored, holistic support to people living with dementia and their families: a new primary care intervention

Background:Currently, post-diagnostic dementia care and support in England and Wales is highly variable, and often insufficient in meeting the needs of people living with dementia and their families.Objective:To develop and deliver a new primary care based intervention to enable people living with dementia and their carers to live as well as possible from the point of diagnosis to end of life.Method:We conducted a survey and interviews with managers and commissioners of dementia services, and in-depth qualitative studies of six different existing service models to understand current post-diagnostic support in England and Wales. We also reviewed relevant literature on the management of long-term conditions and models of post-diagnostic support. Using the findings, a new intervention has been produced through a co-development process involving stakeholder task groups, our patient and public involvement group (the Dementia Care Community), and the multidisciplinary programme management board.Results:Our findings highlighted key priorities from the perspective of people living with dementia, their carers, and professionals which focus on the need for personalised, proactive and holistic care. We also identified a number of challenges in the provision of good quality post-diagnostic support, and examples of how these could be overcome to deliver best practice. Importantly, we found that no one service model delivered all aspects of post-diagnostic dementia support well.The new intervention will focus on three main areas: developing systems for delivering evidence-based support; delivering tailored care and support; and building capacity and capability. A clinical dementia expert, a specialist nurse or similar professional with dementia expertise, will be based in primary care to lead and facilitate change across these three interlinked areas to develop systems and services that meet the needs of all older people living with dementia.Conclusion:Our new intervention will now be tested in practice in a feasibility and implementation study.