Diverse learners: learning disabilities and quality of life following mind-body and health education interventions for adults with neurofibromatosis.

PURPOSE: Neurofibromatosis (NF) is associated with low quality-of-life (QoL). Learning disabilities are prevalent among those with NF, further worsening QoL and potentially impacting benefits from mind-body and educational interventions, yet research on this population is scarce. Here, we address this gap by comparing NF patients with and without learning disabilities on QoL at baseline and QoL-related gains following two interventions. METHODS: Secondary analysis of a fully-powered RCT of a mind-body program (Relaxation Response Resiliency Program for NF; 3RP-NF) versus an educational program (Health Enhancement Program for NF; HEP-NF) among 228 adults with NF. Participants reported QoL in four domains (Physical Health, Psychological, Social Relationships, and Environmental). We compare data at baseline, post-treatment, and 12-month follow-up, controlling for intervention type. RESULTS: At baseline, individuals with NF and learning disabilities had lower Psychological (T = -3.0, p = .001) and Environmental (T = -3.8, p < .001) QoL compared to those without learning disabilities. Both programs significantly improved all QoL domains (ps < .0001-0.002) from baseline to post-treatment, regardless of learning disability status. However, those with learning disabilities exceeded the minimal clinically important difference in only one domain (Psychological QoL) compared to three domains in individuals without learning disabilities. Moreover, those with learning disabilities failed to sustain statistically significant gains in Psychological QoL at 12-months, while those without learning disabilities sustained all gains. CONCLUSION: Adults with NF and learning disabilities have lower Psychological and Environmental QoL. While interventions show promise in improving QoL regardless of learning disabilities, additional measures may bolster clinical benefit and sustainability among those with learning disabilities.

Health inequalities for people with learning disabilities: why it matters and what emergency physicians need to know.

People with learning disabilities die on average 16 years earlier than the general population in England. They are a vulnerable group and may have unhealthy lifestyles and multimorbidity that lead to poor health outcomes. Worryingly, premature deaths are also more common and these often have contributory healthcare causes. This may be a result of staff lacking awareness, expertise and experience managing people with learning disabilities, the lack of reasonable adjustments, or discriminatory attitudes. Other issues include polypharmacy and inappropriate prescribing of sedatives, inappropriate use of do not resuscitate orders, and diagnostic overshadowing leading to delayed or misdiagnoses. Emergency physicians need to be aware of subtle or atypical presentations of illnesses such as sepsis. Carers and family can be vital informants, helping clinicians to interpret subtle signs and aid communication with people with learning disabilities. One simple approach to reasonable adjustments, as required by law, is the TEACH mnemonic: people with learning disabilities need more time (T), in a conducive environment (E), with clinicians approaching them with the right attitude (A) and an open mind. Good communication (C) is essential and clinicians must make every attempt to understand their patients and to be understood by their patients. Finally clinicians need to consider what 'help' (H) the patient and their carers or family needs. With the right approach, time and environment, emergency physicians can optimise the care delivered to people with learning disabilities to address their needs.

Transition for adolescents with learning disabilities and an immunodeficiency.

Many adolescents with immunodeficiency are diagnosed with a comorbid learning disability. The process of transition from paediatric to adult healthcare for these individuals occurs with a range of additional challenges. Due to the lack research available on immunodeficiency specifically, this article addresses a number of recommendations from the research undertaken with individuals with other chronic health conditions and learning disability. The research suggests that for individuals with learning disabilities autonomy and independence needs to be acknowledged despite their perceived need for increased input from parents and medical professionals. Instead, medical professionals could prioritise their relationship with the adolescent patient by ensuring communication needs are met and that a sense of continuity between paediatric and adult services is maintained. Families can be supported through psychological interventions which provide skills to allow family members to empower their young adult with a learning disability. Specific tools to help the transition process run more smoothly are also recommended and have proven to be effective in other parts of the world.

Person-centred critical care for a person with learning disability and COVID-19: case study of positive risk taking.

People with learning disabilities are known to experience a wide range of health inequalities and have a lower life expectancy than the general population. During the COVID-19 pandemic this extended to higher mortality rates following infection with the novel coronavirus. This case study presents an example of a positive outcome for Jade, a 21-year-old woman with learning disabilities and autism who required a long period in intensive care following COVID-19 infection. It demonstrates the impact of effective multidisciplinary collaboration involving the acute hospital learning disability liaison nurse and Jade's family, leading to a wide range of reasonable and achievable adjustments to her care.

How Do Intermediate Grade Students With and Without Language-Based Learning Disabilities Use Noun Phrases in Narrative Writing?

PURPOSE: Noun phrase usage and elaboration is an important feature of literate language. In this study, we described noun phrase usage and elaboration in the narrative writing samples of intermediate grade students with and without language-based learning disabilities. METHOD: Narrative writing samples from 64 students in fourth through sixth grades were coded for five types of noun phrases using coding procedures adapted from prior research. Noun phrase ratios (NPR) were calculated for each type of noun phrase evaluated in the study. NPRs represented the proportion of noun phrases to total clauses produced in the sample. RESULTS: Students in this study included all five types of noun phrases in their narrative writing to varying degrees. Between-group differences were observed in the frequency of complex noun phrase usage. Significant relationships between NPRs, analytic writing measures, and a standardized reading measure were observed. CONCLUSIONS: Noun phrase usage is an important consideration for both theoretical and clinical purposes. Findings from this study are related to theoretical models of writing and levels of language frameworks. The clinical relevance for noun phrase assessment and intervention for intermediate grade students with language-based learning disability is discussed.

Review and update of the Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD).

BACKGROUND: The Health of the Nation Outcomes Scales for people with Learning Disabilities (HoNOS-LD) is an 18-item measure which provides a structured and standardized approach to rating various clinical and psychosocial outcomes and has been in use nationally since 2002. AIMS: To revise and improve the HoNOS-LD's utility in contemporary intellectual disability (ID) services whilst retaining its original objectives and five-point severity ratings. METHOD: ID clinicians were invited to complete an online survey, rating each item on the existing measure for being fit for purpose, identifying issues and suggesting improvements based on their experience of using the HoNOS-LD in practice. Scales were then assessed and revised sequentially; survey responses were used to inform discussion and revisions to the HoNOS-LD by the Advisory Board. RESULTS: A total of 75 individuals replied. Respondents had used HoNOS-LD for an average of 8.0 years (S.D. 5.28 years) and 88% found the scale to be useful in their practice. On average, respondents used HoNOS-LD ratings to inform care 42.4% of the time (S.D. 33.5%). For each scale there was a significant negative correlation between the percentage of positive/very positive respondent ratings and the number of changes proposed. Common changes included simplifying terms, reducing ambiguity and replacing anachronistic language. CONCLUSION: The changes outlined in this paper are based on the advisory group's expert consensus. These changes are intended to improve reliability and validity but now need empirical testing as well as review by service users.

Music-based interventions for people with profound and multiple learning disabilities: A systematic review of the literature.

Music is motivational, accessible and engaging for individuals with learning disabilities. Several systematic reviews have addressed the effects of music activity on people with learning disabilities; however, none has specifically reviewed the use of musical activity with people with profound and multiple learning disabilities.This review aimed to: 1. identify peer-reviewed studies and describe the characteristics of evidence-based musical activity used with people with profound and multiple learning disabilities and 2. evaluate and analyse the effectiveness of these music-based interventions and identify gaps within current research. A systematic search was conducted in April 2021 identifying seven peer-reviewed studies which included music-based interventions with at least one person with profound and multiple learning disabilities.Findings reveal the interventions varied in their frequency, duration and content. The outcome of most (n=6) interventions documented the development of the participants' social skillset. Interventions were predominantly (n=6) implemented by facilitators with musical expertise. The diverse and novel nature of the reviewed studies highlights a need to expand and enhance research with this population.

Meta-Analyses of Reading Intervention Studies Including Students With Learning Disabilities: A Methodological Review.

Learning disabilities (LD) may affect a range of academic skills but are most often observed in reading. Researchers and policymakers increasingly recommend addressing reading difficulties encountered by students with LD using evidence-based practices, or interventions validated through multiple, high-quality research studies. A valuable tool in identifying evidence-based practices is the meta-analysis, which entails statistically aggregating the results obtained through primary studies. Specific methods used in meta-analyses have the potential to influence their findings, with ramifications for research and practice. This review assessed the methodological features of the systematic reviews and analytic procedures featured in meta-analyses of reading intervention studies that included students with LD written between 2000 and 2020. Identified articles (N = 23) suggest that meta-analyses have become more prevalent and transparent over time, notwithstanding issues related to publication bias and the opacity of coding procedures. A discussion of implications follows a description of results.

Supporting a patient with learning disabilities through screening and treatment for primary breast cancer.

This article presents a case study evaluation of supporting a patient with learning disabilities through the NHS Breast Screening Programme diagnostic pathway and subsequent treatments for breast cancer. The process encompassed best interests meetings and treatment planning, surgeries, chemotherapy and anti-Her2 treatments, radiotherapy and endocrine therapy. Problems that occurred during this period included issues around completing surgery, managing chemotherapy treatment during the COVID-19 pandemic and the feasibility and tolerance of radiotherapy. The role of a breast care nurse in this patient's pathway was to facilitate treatment, support the patient and her family, and to liaise with the wider nursing and medical teams to coordinate care.

[Place of the BMT-i modular tool in the assessment of learning disabilities]. / Place de l'outil modulable BMT-i dans l'évaluation des troubles de l'apprentissage.

PLACE OF THE BMT-I MODULAR TOOL IN THE ASSESSMENT OF LEARNING DISABILITIES Twenty percent of children have difficulties learning to read, write, or count. Eight percent of children have a specific and durable impairment in the development of a learning or cognitive function or Learning Disabilities (LD), often called «dys¼ (dysphasia, dyslexia, dysorthography, dyscalculia, dysgraphia, etc.). This is a public health problem, which has been addressed by the Haute Autorité de Santé (HAS), which recommends a health program based on the needs of each child, coordinating education and health professionals - rehabilitation specialists and medical prescribers. The role of the child's doctor is essential in the first line of action to identify these problems, to examine the child, to prescribe reeducation when necessary and to follow the evolution. However, he has received little training. The modular BMT-i (computerized adaptable test battery) tool is validated, easy to use and reliable. It allows the screening of difficulties in each domain in 10 to 25 minutes in front of a complaint by selecting the appropriate tests. A choice of clinical situations helps to understand the disorders and the approach of the examination of the child, to inform the families of the results, to accompany them on the therapeutic project and to prescribe the care adapted to each situation.

PLACE DE L'OUTIL MODULABLE BMT-I DANS L'ÉVALUATION DES TROUBLES DE L'APPRENTISSAGE Vingt pour cent des enfants sont en difficulté pour apprendre à lire, écrire et/ou compter. Huit pour cent des enfants présentent une altération durable et spécifique du développement d'un apprentissage ou d'une fonction cognitive (« troubles spécifiques du langage et des apprentissages ¼ [TSLA]), souvent simplifié sous le terme « dys ¼ (dysphasie, dyslexie, dysorthographie, dyscalculie, dysgraphie, etc.). La Haute Autorité de santé s'est saisie de ce problème de santé publique et recommande un parcours de santé ciblé sur les besoins de chaque enfant, coordonnant professionnels de l'éducation et de la santé ­ rééducateurs et médecins prescripteurs. Le rôle du médecin est essentiel en premier recours pour identifier les enfants concernés, les examiner, prescrire les rééducations nécessaires et suivre l'évolution. L'outil modulable BMT-i (batterie modulable de tests informatisée) validé, simple d'utilisation et fiable, permet le dépistage des difficultés dans chaque domaine en dix à vingt-cinq minutes, en sélectionnant les épreuves adéquates. Un choix de situations cliniques aide à la compréhension des troubles et à la démarche de l'examen de l'enfant, afin d'informer les familles des résultats, les accompagner dans les actions à mener et prescrire les soins adaptés à chaque situation.

Pediatric School Outreach: Clinical Needs of an Urban Student Population.

Pediatric School Outreach (PSO) is a school-based health center (SBHC) in an urban elementary school in Toronto, Canada. PSO focuses on developmental, behavioral, mental health, and educational concerns. A retrospective chart review aimed to characterize demographics, diagnoses, and referrals of patients attending PSO. Of 137 children, ages 2 to 15 years, 73.7% were male; 58.1% had a household annual income of <$30 000 CAD. Possible or confirmed diagnoses included attention deficit hyperactivity disorder (48.5%), learning disability (35.6%), anxiety (22.0%), autism spectrum disorder (16.7%), oppositional defiant disorder (14.4%), and expressive language delay (11.4%). Involvement of community mental health and other agencies was advised in 37.9% of cases. Psychoeducational testing was recommended for 25.0% of patients. Results suggest the need for timely developmental testing, particularly for autism spectrum disorder, and accessible learning disability diagnostic support. There is potential for expansion of interprofessional care at PSO, including psychology, psychiatry, social work, and behavior therapy.

Systemic safety inequities for people with learning disabilities: a qualitative integrative analysis of the experiences of English health and social care for people with learning disabilities, their families and carers.

BACKGROUND: Failures in care for people with learning disabilities have been repeatedly highlighted and remain an international issue, exemplified by a disparity in premature death due to poor quality and unsafe care. This needs urgent attention. Therefore, the aim of the study was to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their carers and families raised. METHODS: Two data sources exploring the lived experience of care for people with learning disabilities were synthesised using an integrative approach, and explored using reflexive thematic analysis. This comprised two focus groups with a total of 13 people with learning disabilities and supportive staff, and 377 narratives posted publicly via the feedback platform Care Opinion. RESULTS: The qualitative exploration highlighted three key themes. Firstly, health and social care systems operated with varying levels of rigidity. This contributed to an inability to effectively cater to; complex and individualised care needs, written and verbal communication needs and needs for adequate time and space. Secondly, there were various gaps and traps within systems for this population. This highlighted the importance of care continuity, interoperability and attending to the variation in support provision from professionals. Finally, essential 'dependency work' was reliant upon social capital and fulfilled by paid and unpaid caring roles to divergent extents, however, advocacy provided an additional supportive safety net. CONCLUSIONS: A series of safety inequities have been identified for people with learning disabilities, alongside potential protective buffers. These include; access to social support and advocacy, a malleable system able to accommodate for individualised care and communication needs, adequate staffing levels, sufficient learning disabilities expertise within and between care settings, and the interoperability of safety initiatives. In order to attend to the safety inequities for this population, these factors need to be considered at a policy and organisational level, spanning across health and social care systems. Findings have wide ranging implications for those with learning disabilities, their carers and families and health and social care providers, with the potential for international learning more widely.

Transitions for older people with learning disabilities and behaviours that challenge others, and their family carers: a merged protocol for two rapid scoping reviews of evidence.

BACKGROUND: There are over 1 million adults with a learning disability in the UK, of whom approximately 20% displaying behaviours that challenge others. Two thirds of people with learning disabilities live in the family home. As they and their family carers age, both are likely to face particular difficulties and stresses, but there is little understanding of their experiences and needs. To address this evidence gap, our main objective is to undertake two rapid scoping reviews that will collectively focus on the health and social care needs, experiences, service interventions and resources of older people with learning disabilities and behaviours that challenge others, and their family carers. Both reviews will focus on issues relating to forward planning and transitions to different care contexts. The study is part of a research project funded by the National Institute for Health Research No.129491. METHODS: We propose to address the need for evidence via two rapid scoping reviews. We will include published and unpublished (grey) literature, encompassing empirical research, policy and practice guidance and lay resources to support decision-making. We will search multiple electronic databases, hand search references lists, and use expert guidance to identify potential evidence. The following databases were used for research and grey literature: CINAHL; Healthcare Management Information Consortium (HMIC); NHS Evidence; Scopus; Turning Evidence Into Practice (TRIP); Web of Science (WoS); Google (first 5 pages); and Google Scholar (first 5 pages). For RR2, additional intended databases are the Carer Research Knowledge Exchange Network (CAREN) and Social Care Institute for Excellence (SCIE). Two reviewers will independently screen all citations and full-text articles for inclusion. One reviewer will extract data, with an independent review undertaken by the research team. Critical appraisal will depend on the nature of included evidence. Narrative synthesis will be collaboratively developed, with descriptive information presented in tables summarising study characteristics and thematic analysis of findings presented in the main text. Dissemination will be through journal publication, conference presentations and written short-form, easy-read versions of articles and audio-video clips for lay audiences. DISCUSSION: We will consider the strengths and limitations of our reviews, considering their impact on findings. We will summarise the main findings and provide an interpretation linked to the review questions and objectives. We will consider the implications of our findings for policy and practice, as well as future research addressing the support of older people with learning difficulties and behaviours that challenge others, and their family carers, in the context of transition to different care contexts in the UK. The protocol has been registered as Vseteckova, J., Jordan, J., Tilley, E., Larkin, M., Ryan, S., and Wallace, L. (2021, December 4). Transitions for older people with learning disabilities and behaviours that challenge others, and their family carers: a merged protocol for two rapid scoping reviews of evidence. Retrieved from osf.io/jzrn9.

Referral thresholds for an integrated learning disability eye care pathway: a consensus approach.

INTRODUCTION: Local Optometric Support Unit (LOCSU) have published their refreshed clinical pathway for eye care for people with a learning disability. The document sets out the adjustments to practice that a community optometrist might make in order to provide optimal care for a person with learning disability attending a primary eye care assessment. The pathway specifically points to the need to retain patients in primary care where appropriate and 'reduce the number of people with learning disability who are inappropriately referred into the Hospital Eye Service (HES).' Pivotal to this refreshed pathway is the integration with secondary care, with local arrangements to facilitate referral and hospital management where appropriate. There are few ophthalmologists nationally who frequently encounter patients with a learning disability in their hospital practice and knowing where to start when creating referral criteria or KPIs may create a barrier to services becoming established. In order to address this gap in experience, we set about developing a set of consensus statements regarding referral thresholds for ocular conditions commonly encountered in adults with learning disability. METHOD: A series of video interviews were undertaken with eye health professionals with a range of experience in eye care for people with learning disability. Each contributor commented on the usability and clarity of each element of the referral criteria. In addition, each contributor was asked to express the overriding principles by which they make decisions regarding referral thresholds for patients with learning disability. These were collated into the final document which was circulated and agreed by all participants. RESULTS: A table setting out referral thresholds for commonly encountered eye conditions in adults with learning disabilities is presented. CONCLUSION: We have presented a succinct set of consensus statements relating referral thresholds for common presentations of visual problems in adults with learning disability in the UK distilled from the collective experience of a group of eye health professionals. The intention was not to present a comprehensive review of management of each condition. Rather, the consensus statements may form the starting point from which each area could develop locally agreed criteria, as is suggested by the LOCSU pathway guidance.

Effects of Interventions Using Virtual Manipulatives for Students With Learning Disabilities: A Synthesis of Single-Case Research.

Virtual manipulatives are interactive and dynamic visual objects on a screen, which allow students to manipulate them to construct mathematical knowledge. The purpose of this study was to synthesize the literature on interventions that used virtual manipulatives to improve the mathematics performance of K-12 students with learning disabilities. A total of 19 single-case design studies (16 peer-reviewed articles and three dissertations) were selected using specific selection criteria. Overall, students with learning disabilities demonstrated mathematical improvement after receiving interventions involving virtual manipulatives. Although many students with learning disabilities maintained and generalized the intervention effects, further research is required to verify the current findings.

The Effects of Data-based Instruction (DBI) for Students with Learning Difficulties in Korea: A Single-subject Meta-analysis.

Data-based instruction (DBI) is an ongoing process to utilize students' data for determining when and how to intensify intervention. It is an educational approach that is suggested as effective to enhance achievements of struggling learners, particularly for those who did not respond to intensive intervention in usual ways. In Korea, DBI was introduced and applied for students with learning difficulties especially since 2000 when the first Korea curriculum-based measurement (CBM) was developed as the name of Basic Academic Skills Assessment. Despite a number of studies accumulated since then, there has been a lack of research that examined the level of evidence-based practice (EBP) of DBI research. Thus, the present study sought to synthesize the DBI research so far in Korea by analyzing the effectiveness of DBI for school-aged students with learning difficulties via meta-analysis and evaluating the quality of the research. In this study, a total of 32 single-subject design studies were used. Multilevel meta-analysis revealed that the mean effect size of DBI was statistically significant (B = 1.34) and there was significant variance across participants in effect sizes. The results from the conditional model showed that exceptionality type, the number of sessions, and the length of each session were significantly accountable for the variability of effect sizes. In addition, the results of the qualitative analysis revealed the acceptable quality of the overall DBI research with some limitations. Based on these findings, implications and study limitations were discussed.

Boosting Numerical Cognition in Children and Adolescents with Mathematical Learning Disabilities by a Brain-Based Intervention: A Study Protocol for a Randomized, Sham-Controlled Clinical Trial.

Numbers are everywhere, and supporting difficulties in numerical cognition (e.g., mathematical learning disability (MLD)) in a timely, effective manner is critical for their daily use. To date, only low-efficacy cognitive-based interventions are available. The extensive data on the neurobiology of MLD have increased interest in brain-directed approaches. The overarching goal of this study protocol is to provide the scientific foundation for devising brain-based and evidence-based treatments in children and adolescents with MLD. In this double-blind, between-subject, sham-controlled, randomized clinical trial, transcranial random noise stimulation (tRNS) plus cognitive training will be delivered to participants. Arithmetic, neuropsychological, psychological, and electrophysiological measures will be collected at baseline (T0), at the end of the interventions (T1), one week (T2) and three months later (T3). We expect that tRNS plus cognitive training will significantly improve arithmetic measures at T1 and at each follow-up (T2, T3) compared with placebo and that such improvements will correlate robustly and positively with changes in the neuropsychological, psychological, and electrophysiological measures. We firmly believe that this clinical trial will produce reliable and positive results to accelerate the validation of brain-based treatments for MLD that have the potential to impact quality of life.

[Adolescent learning disability: are screening and management helpful?] / Dépistage et prise en charge des troubles de l'apprentissage chez l'adolescent.

Learning disabilities are frequently mentioned in adolescent consultations. But what exactly are they? How is the diagnosis made? What treatment should be offered to the teenager and his or her family to enable them to manage their difficulties as best they can?

[Psychoeducation for Parents of Children with Learning Disorders: A Satisfaction Study]. / Psychoedukation bei Lernstörungen: Wie zufrieden sind betroffene Eltern?

Psychoeducation for Parents of Children with Learning Disorders: A Satisfaction Study The present study investigates the implementation of psychoeducation for conveying a diagnosis of specific learning disorders to the parents of affected children. It addresses the question of how such consultations are structured and which factors predict how satisfied parents are with the psychoeducation they receive. 167 parents of children with specific learning disorders from Germany were surveyed via an online questionnaire and asked about their experiences and satisfaction with the psychoeducational aspects of their individual consultation. The results show that the implementation of psychoeducation was strongly heterogeneous. For example, the duration of the consultation varied from 4 to 120 minutes and the child in question was only present in around half of the cases. The methodical diversity was rather limited and the causes of learning disorders were rarely discussed with the parents. 54 % of the parents were satisfied or very satisfied with the psychoeducation. The findings of a regression analysis show that the consultant's professional and emotional competence as well as the practical value significantly predicted the parents' satisfaction. Overall, this regression model is able to explain 81.8 % variance in parents' satisfaction. An open and empathetic atmosphere during the consultation as well as specific and practical tips on how to support their child are particularly important.