'If I Don't Have My Support Worker in the Room ': A Multi-perspective Mixed Methods Study of Remote Daily Living Support for Neurodivergent Young Adults.

PURPOSE: Information technology is increasingly being employed for providing support and interventions in disability and health service contexts. This study aimed to investigate service users' and support workers' perspectives on remote support in daily living for young adults with neurodevelopmental conditions. METHODS: Using a convergent mixed methods approach, we integrated qualitative and quantitative findings from survey responses and focus groups. Young service users (aged 18 to 29) diagnosed with ADHD and/or autism (n = 35) and support workers (n = 64) from four municipalities in Sweden responded to a survey designed to tap into their lived experiences and views. The topic was explored further in focus groups with young service users (n = 7) and support workers (n = 3). Open-ended survey questions were analyzed using qualitative content analyses and complemented with information from the focus groups, while closed survey questions were summarized descriptively. Inferences were merged in a joint display. RESULTS: While participants reported having access to digital devices, service routines for remote contact were not in place. Service users were more hesitant than support workers in endorsing remote support, expressing concerns that this approach would be inferior to in-person support (e.g., owing to miscommunications and insufficient social and emotional contact). Still, both groups expressed that remote contact may at times be a beneficial complement to in-person meetings, increasing accessibility and user choice. CONCLUSION: Service providers planning to implement remote support elements should explore the demand, acceptability, and organizational readiness for this approach. Moving forward, user engagement will be crucial to meet individual preferences, values, and needs.

Identifying Game-Based Digital Biomarkers of Cognitive Risk for Adolescent Substance Misuse: Protocol for a Proof-of-Concept Study.

BACKGROUND: Adolescents at risk for substance misuse are rarely identified early due to existing barriers to screening that include the lack of time and privacy in clinic settings. Games can be used for screening and thus mitigate these barriers. Performance in a game is influenced by cognitive processes such as working memory and inhibitory control. Deficits in these cognitive processes can increase the risk of substance use. Further, substance misuse affects these cognitive processes and may influence game performance, captured by in-game metrics such as reaction time or time for task completion. Digital biomarkers are measures generated from digital tools that explain underlying health processes and can be used to predict, identify, and monitor health outcomes. As such, in-game performance metrics may represent digital biomarkers of cognitive processes that can offer an objective method for assessing underlying risk for substance misuse. OBJECTIVE: This is a protocol for a proof-of-concept study to investigate the utility of in-game performance metrics as digital biomarkers of cognitive processes implicated in the development of substance misuse. METHODS: This study has 2 aims. In aim 1, using previously collected data from 166 adolescents aged 11-14 years, we extracted in-game performance metrics from a video game and are using machine learning methods to determine whether these metrics predict substance misuse. The extraction of in-game performance metrics was guided by literature review of in-game performance metrics and gameplay guidebooks provided by the game developers. In aim 2, using data from a new sample of 30 adolescents playing the same video game, we will test if metrics identified in aim 1 correlate with cognitive processes. Our hypothesis is that in-game performance metrics that are predictive of substance misuse in aim 1 will correlate with poor cognitive function in our second sample. RESULTS: This study was funded by National Institute on Drug Abuse through the Center for Technology and Behavioral Health Pilot Core in May 2022. To date, we have extracted 285 in-game performance metrics. We obtained institutional review board approval on October 11, 2022. Data collection for aim 2 is ongoing and projected to end in February 2024. Currently, we have enrolled 12 participants. Data analysis for aim 2 will begin once data collection is completed. The results from both aims will be reported in a subsequent publication, expected to be published in late 2024. CONCLUSIONS: Screening adolescents for substance use is not consistently done due to barriers that include the lack of time. Using games that provide an objective measure to identify adolescents at risk for substance misuse can increase screening rates, early identification, and intervention. The results will inform the utility of in-game performance metrics as digital biomarkers for identifying adolescents at high risk for substance misuse. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46990.

Quality-of-life assessment instruments used across ALS clinics.

INTRODUCTION/AIMS: Instruments have been developed to assess quality of life (QoL) among people with amyotrophic lateral sclerosis (ALS). It is unclear whether these are utilized regularly in the clinical setting to guide individual patient care. In this study we aimed to understand the current use of instruments and existing barriers to assessing QoL in clinical ALS care. METHODS: An anonymous survey developed by Northeast ALS (NEALS) Consortium Palliative Committee members was distributed to all multidisciplinary NEALS members. Data were summarized via calculation of descriptive statistics. ALS Center characteristics were compared using chi-square and Fisher exact tests for categorical variables. RESULTS: Seventy-three (6.4%) of the 1132 NEALS members responded to the survey, representing 148 clinics, 49.3% of whom reported assessing QoL during clinic visits. The most used ALS-specific instruments were the ALS Assessment Questionnaire (19.4%) and Amyotrophic Lateral Sclerosis Specific Quality of Life scale (16.6%). Barriers reported were uncertainty regarding which instrument to use and length of visits. QoL assessment was not significantly correlated with length of clinic visit but with access to specialty palliative care. DISCUSSION: QoL assessments are performed by some, but not all, ALS centers during clinical visits. Although this study did have a low number of responding centers, the percentage, the proportion is similar to that seen in earlier studies, which limits the findings' generalizability. The value of QoL assessments' impact on outcomes should be further investigated and, if warranted, creative ways sought to increase the frequency of their use, including patient self-assessments before clinic and/or the use of teleheath to reduce the length of clinic visits.

Idiopathic Intracranial Hypertension Secondary to Chronic Inflammatory Demyelinating Polyradiculoneuropathy.

Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is the most common immune-mediated inflammatory polyneuropathy, defined as progressive or relapsing symptoms for over two months with pathological or electrophysiological evidence of peripheral nerve demyelination. Papilledema is optic nerve head edema secondary to increased intracranial pressure or infiltrative/infectious etiologies. Regardless of the cause, visual loss is one of the feared manifestations due to optic nerve damage. We present a 50-year-old female patient with CIDP who developed papilledema that was secondary to increased intracranial pressure from high protein content in the cerebrospinal fluid (CSF) and elevated body mass index (BMI) secondary to prednisone use. Treatment with acetazolamide completely resolved the papilledema and headaches, and the patient was later maintained on mycophenolate, intravenous immunoglobulin (IVIG), rituximab, and prednisone. To the best of our knowledge, this is the first case that describes successful medical management of increased intracranial pressure in the setting of CIDP.

The Role of Comorbid Symptoms in Perceived Stress and Sleep Problems in Adolescent ADHD.

We examined perceived stress and sleep problems in adolescent ADHD and whether this varies as a function of ADHD presentation and sex. Further, we mapped structural associations between ADHD symptoms, comorbid symptoms, perceived stress, and sleep problems. Participants were 306 adolescents aged 13-19 years (66.8% females, 193 had an ADHD diagnosis, 113 were controls). Parents rated ADHD symptoms, all other constructs were self-rated. Adolescents with ADHD had elevated levels of perceived stress and sleep problems. Girls with ADHD reported the highest levels of perceived stress. Emotional symptoms mediated the effect of inattention whereas conduct problems mediated the effect of hyperactivity/impulsivity on stress and sleep. Perceived stress and sleep problems should be considered when mapping ADHD-related problems. Comorbid symptoms are potential intervention targets that may increase treatment response.

Moderators of long-term treatment outcome when comparing two group interventions for adolescents with ADHD: who benefits more from DBT-based skills training?

BACKGROUND: Psychosocial interventions for adolescents with attention-deficit/hyperactivity disorder (ADHD), targeting emotional dysregulation and impulsive behaviors, have been requested, but the heterogeneity within this group makes it unlikely that there is one treatment that fits all. The aim of this study was to identify which adolescents with ADHD might have an effect from a structured skills training group (SSTG) based on dialectical behavioral therapy, by exploring pre-treatment characteristics as potential moderators of long-term treatment outcome. METHODS: This study was based on follow-up data from a randomized controlled trial comparing the SSTG (n = 71) to a psychoeducational control intervention (n = 57) for adolescents with ADHD (15-18 years old). Clinical characteristics (sex, age, medication status, ADHD presentation, severity of ADHD symptom, psychiatric comorbidity, impairment of emotional dysregulation and functional impairment) were explored as potential moderators of pre-treatment to follow-up change in ADHD symptoms and functional impairment. Moderation analyses were performed using the PROCESS macro for SPSS. RESULTS: Three moderators (severity of hyperactivity/impulsivity, conduct problems and impairment of emotional dysregulation) were identified in regard to the outcome self-rated change in ADHD symptoms. Participants with elevated pre-scores on these variables had a better effect of the SSTG than of the psychoeducational control intervention. No moderators were found in regard to the parental-rated outcomes. CONCLUSIONS: The SSTG seems to be beneficial for adolescents with ADHD who perceive pronounced symptoms of hyperactivity/impulsivity, conduct problems and emotional dysregulation. Our findings need to be confirmed in future trials evaluating dialectical behavioral therapy-based skills training for adolescents with ADHD, where these moderators could be used as criteria for inclusion or stratification. TRIAL REGISTRATION: https://doi.org/10.1186/ISRCTN17366720 , retrospectively registered.

Associated predictors of functional impairment among adolescents with ADHD-a cross-sectional study.

BACKGROUND: Attention-deficit/hyperactivity disorder (ADHD) in adolescence is associated with functional impairment in several domains of life. To enable development of interventions that more effectively target functional impairment in this age group, the associations between clinical characteristics and impairment need to be clarified. The aim of this study was to investigate the associations between ADHD and functional impairment, if they varied by sex, and the potential impact of comorbid psychiatric symptoms on the associations. METHODS: This was a cross-sectional study including adolescents with ADHD (n = 164) and a reference group of adolescents without ADHD (n = 106). Self-ratings and parental ratings of functional impairment in different life domains were used as outcomes in all analyses. Differences between groups were investigated with comparative analyses. General linear models (GLMs) were used to explore associations between ADHD symptoms and functional impairment in adolescents with ADHD, while adjusting for of comorbid symptoms, sex, and medication. RESULTS: Adolescents with ADHD displayed higher levels of functional impairment than peers without ADHD, and girls with ADHD rated higher impairment than their male counterparts. The combined ADHD presentation was associated with the highest levels of self-reported impairment, while parental ratings indicated comparable levels of overall impairment across presentations. In the adjusted GLMs, symptoms of inattention were strongly associated with self- and parent-rated impairment in school, but symptoms of hyperactivity/impulsivity were not, whereas symptoms of both inattention and hyperactivity/impulsivity were modestly associated with self-rated impairment with friends. Further, both emotional and conduct problems were associated with impairment in daily life. CONCLUSIONS: Our results suggest that attention difficulties, in particular, seem to impair academic functioning in adolescents with ADHD, and interventions targeting such difficulties are warranted. In addition, comorbid symptoms need to be assessed and treated, and self-reports of functioning should be included in research and clinical practice involving adolescents.

Evaluation of a structured skills training group for adolescents with attention-deficit/hyperactivity disorder: a randomised controlled trial.

Attention-deficit/hyperactivity disorder (ADHD) in adolescence is associated with behavioural, emotional and interpersonal problems, and non-pharmacological treatments targeting these difficulties have been requested. The objective of this study was to evaluate the effectiveness and acceptance of an age-adapted structured skills training group (SSTG) for adolescents with ADHD. Adolescents (n = 184, ages 15-18 years) with a diagnosis of ADHD were randomly assigned to either the SSTG, which is based on dialectical behavioural therapy, or an active control group based on psychoeducation. Symptoms of ADHD, behavioural and emotional problems, functional impairment, and health-related outcomes were assessed with self-ratings and parental ratings two weeks before, two weeks after, and six months after treatment. All participants who completed the pre-treatment measurements (n = 164) were included in the main analyses, which were conducted using a linear mixed model. Our results demonstrated no significant group differences in favour of the SSTG for any of the study outcomes. A majority of the participants in both groups reported that they had increased their knowledge about ADHD, improved their ability to manage problems related to the diagnosis, and would recommend the treatment to others. We conclude that the SSTG seems to be acceptable for adolescents with ADHD in a clinical context. However, the treatment was not proved to be more effective or more acceptable than the psychoeducational control intervention.Trial registration: http://www.isrctn.com/ISRCTN17366720,11/05/2016 , retrospectively registered.

MN-166 (ibudilast) in amyotrophic lateral sclerosis in a Phase IIb/III study: COMBAT-ALS study design.

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease with motor neuron loss as a defining feature. Despite significant effort, therapeutic breakthroughs have been modest. MN-166 (ibudilast) has demonstrated neuroprotective action by various mechanisms: inhibition of proinflammatory cytokines and macrophage migration inhibitory factor, phosphodiesterase inhibition, and attenuation of glial cell activation in models of ALS. Early-phase studies suggest that MN-166 may improve survival outcomes and slow disease progression in patients with ALS. This article describes the rationale and design of COMBAT-ALS, an ongoing randomized, double-blind, placebo-controlled, multicenter Phase IIb/III study in ALS. This study is designed to evaluate the pharmacokinetics, safety and tolerability and assess the efficacy of MN-166 on function, muscle strength, quality of life and survival in ALS.

Lay abstract Amyotrophic lateral sclerosis (ALS) is a neurological disease defined by the loss of the nerve cells going to the muscles. Despite significant effort, we still do not have good treatments for ALS. MN-166 (ibudilast) can protect nerve cells by calming inflammation in several ways in models of ALS. Early human studies suggest that MN-166 may extend life and slow disease progression in ALS patients. This article describes the rationale and design of COMBAT-ALS, an ongoing randomized, double-blind, placebo-controlled, multicenter Phase IIb/III study. This study will show the drug's safety and tolerability and its effects on physical function, muscle strength, quality of life and survival in people living with ALS. Trial registration number: NCT04057898 (ClinicalTrial.gov).

You are not alone - adolescents' experiences of participation in a structured skills training group for ADHD.

Little is known about how adolescents with attention deficit/hyperactivity disorder (ADHD) experience participating in group therapy, an important factor to consider when developing treatment methods for this age group. This study aimed to explore how adolescents with ADHD experience participating in a structured skills training group program based on dialectical behavioral therapy. Semi-structured interviews were conducted with 20 adolescents (15-18 years of age) with ADHD after participating in a structured skills training group. The interviews were transcribed verbatim and qualitative content analysis were used to analyze the text. The participants emphasized the value of meeting other adolescents with ADHD and the opportunity to exchange experiences, strategies and tips. Participating in the group treatment made the adolescents realize that they were not alone, and feelings of togetherness and an increased acceptance of themselves were described. The participants associated the treatment with elevated knowledge and understanding, for example, about ADHD, their own functioning and helpful strategies. They also described emotional and behavioral changes, such as higher self-esteem, fewer inter-personal conflicts and improved concentration. Activating and experiential exercises were considered important elements of the treatment, and the participants expressed a need for a variation of exercises, as well as more time for practicing skills, discussions and breaks. The results indicate that the group format add an extra value to the treatment and that the use of an active approach throughout the treatment is of importance for this group of patients.

How do adolescents with ADHD perceive and experience stress? An interview study.

Background: Attention-deficit/hyperactivity disorder (ADHD) is linked to high levels of perceived stress in adult populations. Thus, it is not surprising that stress managing techniques are being included in treatment protocols for adults with ADHD. There is, however, a paucity of studies on perceived stress in adolescents with ADHD.Aims: This study aims to explore how adolescents with ADHD perceive and experience stress (and stressors) using a qualitative approach.Methods: Explorative interviews were conducted with 20 adolescents (Mean age: 16.30) diagnosed with ADHD in conjunction with group treatment therapy. Data were analysed using qualitative content analysis.Results: Stress and ADHD, as well as stress, anxiety and ill-health, were described as closely intertwined. The result is presented in four categories: stress is often present, triggers of stress, stress affects daily life, and stress can be handled and prevented. A relation was found between stress and feelings of helplessness, ill-health and anxiety. Stress was viewed as being out of proportion with reality and was driven by such factors as ADHD symptoms, school demands, unpredictable situations and relational problems. Several negative consequences of stress were reported, including postponing schoolwork and the tendency to give up. Some participants also reported performing better when stressed. Accepting help from others, practising acceptance, settling down and controlling oneself, and planning in advance were seen as helpful stress managing techniques.Conclusions: Stress should be considered among other problems related to ADHD. Psychoeducation about stress, stress managing techniques and coaching should be included in the treatment of adolescents with ADHD.

Evaluation of a structured skills training group for adolescents with attention deficit/hyperactivity disorder (ADHD) - study protocol of a randomised controlled trial.

BACKGROUND: Attention deficit/hyperactivity disorder (ADHD) has a negative impact on several domains of life. However, there is a shortage of evidence-based non-pharmacological treatments for adolescents with ADHD. A structured skills training group (SSTG) based on dialectical behaviour therapy (DBT) has been used in adult patients with ADHD with some promising results, although the treatment has not yet been adapted or evaluated for adolescents with ADHD. This study protocol describes how this treatment was adapted for an adolescent population and how the efficacy of the SSTG will be evaluated using a randomised controlled trial (RCT) design. METHODS: A sample of 184 adolescents (15-18 years of age) with a diagnosis of ADHD has been recruited from seven child and adolescent psychiatric outpatient units and randomised to either the SSTG or an active control group based on psychoeducation. Measures are conducted weekly during the treatment, as well as 2 weeks before treatment and 2 weeks and 6 months after treatment. The primary outcome measures are ADHD symptoms, functional impairment, quality of life and mindfulness. Secondary outcome measures are symptoms of comorbid psychopathology, perceived stress and sleep problems. This article describes the design, methods and analysis plan for evaluating the efficacy of the SSTG. DISCUSSION: The study will be the first RCT to examine the acceptability and efficacy of a SSTG based on DBT adapted for adolescents with ADHD. We believe that the study will extend the current knowledge base about psychological treatment for adolescents with ADHD. TRIAL REGISTRATION: ISRCTN registry ( ISRCTN17366720 ). Retrospectively registered May 112,016.

A Case Series of Adult-Onset Rasmussen's Encephalitis: Diagnostic and Therapeutic Challenges.

Rasmussen's encephalitis (RE) is a rare neurologic disorder characterized by progressive cerebral hemiatrophy and medically refractory epilepsy. The majority of current literature on this topic is focused on the pediatric population. In this case series, we will review three cases of adult-onset RE, as defined by fulfillment of the 2005 Bien criteria. The diagnostic challenge of characterizing this rare disease will be highlighted by the extensive serum, CSF, and pathologic sampling in all three patients. MR imaging and EEG data will be examined over time to characterize hallmark findings as well as progression. In addition, we will review the various forms of therapy attempted in these three patients, namely anti-epileptic drug therapy and immunomodulatory therapy. We will also utilize this case series to critically evaluate the broader context of atypical presentations of this disease and the value of current diagnostic criteria.

Long-wavelength limit of photochemical energy conversion in Photosystem I.

In Photosystem I (PS I) long-wavelength chlorophylls (LWC) of the core antenna are known to extend the spectral region up to 750 nm for absorbance of light that drives photochemistry. Here we present clear evidence that even far-red light with wavelengths beyond 800 nm, clearly outside the LWC absorption bands, can still induce photochemical charge separation in PS I throughout the full temperature range from 295 to 5 K. At room temperature, the photoaccumulation of P700(+•) was followed by the absorbance increase at 826 nm. At low temperatures (T < 100 K), the formation of P700(+•)FA/B(-•) was monitored by the characteristic EPR signals of P700(+•) and FA/B(-•) and by the characteristic light-minus-dark absorbance difference spectrum in the QY region. P700 oxidation was observed upon selective excitation at 754, 785, and 808 nm, using monomeric and trimeric PS I core complexes of Thermosynechococcus elongatus and Arthrospira platensis, which differ in the amount of LWC. The results show that the LWC cannot be responsible for the long-wavelength excitation-induced charge separation at low temperatures, where thermal uphill energy transfer is frozen out. Direct energy conversion of the excitation energy from the LWC to the primary radical pair, e.g., via a superexchange mechanism, is excluded, because no dependence on the content of LWC was observed. Therefore, it is concluded that electron transfer through PS I is induced by direct excitation of a proposed charge transfer (CT) state in the reaction center. A direct signature of this CT state is seen in absorbance spectra of concentrated PS I samples, which reveal a weak and featureless absorbance band extending beyond 800 nm, in addition to the well-known bands of LWC (C708, C719 and C740) in the range between 700 and 750 nm. The present findings suggest that nature can exploit CT states for extending the long wavelength limit in PSI even beyond that of LWC. Similar mechanisms may work in other photosynthetic systems and in chemical systems capable of photoinduced electron transfer processes in general.