Outcome Measures for Core Symptoms of Intellectual Disability: State of the Field

2020 ◽  
Vol 125 (6) ◽  
pp. 418-433 ◽  
Author(s):  
Audrey Thurm ◽  
Bridgette Kelleher ◽  
Anne Wheeler
Keyword(s):  
Intellectual Disability ◽  
Outcome Measures ◽  
Primary Outcome ◽  
Adaptive Functioning ◽  
Measure Change ◽  
Range Testing ◽  
Core Symptoms ◽  
Age Range ◽  
Core Features ◽  
Alternative Metrics

Abstract Intellectual disability (ID) is defined by impairments in intellectual and adaptive functioning. As such, tools designed to assess these domains would theoretically be ideal outcome measures for treatment trials targeting core symptoms of ID. However, measures of intellectual and adaptive functioning have rarely been used as primary outcome measures to date and further study is needed regarding their usefulness to measure change. This area of inquiry is important because promising, mechanism-modifying treatments for conditions leading to ID are being initiated. To show efficacy, these treatments need to demonstrate an impact on core features of ID. After reviewing literature on this topic, we suggest solutions to several problems outlined, including use of out-of-age-range testing, alternative metrics, and development of new measures.

A mixed-methods examination of the gap between intelligence and adaptive functioning in autistic young adults without intellectual disability

Autism ◽  
2021 ◽  
pp. 136236132110183
Author(s):  
Nicole L Matthews ◽  
Kyla Christenson ◽  
Sarah Kiefer ◽  
Christopher J Smith
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Statistical Analysis ◽  
Qualitative Analysis ◽  
Independent Living ◽  
Adaptive Functioning ◽  
Parent Report ◽  
Intellectual Ability ◽  
Standardized Assessments ◽  
Service Needs

This study examined adaptive functioning, strategies used to develop adaptive functioning skills, and areas where additional services could benefit autistic young adults without intellectual disability. Participants were 21 autistic young adults and at least one parent of each young adult. Quantitative analyses replicated previous reports of an adaptive functioning disadvantage relative to intellectual functioning such that adaptive functioning standard scores were significantly lower than intelligence quotient scores. Qualitative analysis utilized grounded theory methodology and yielded a conceptual model describing the nature and development of adaptive functioning in this demographic. Together, findings provide a more nuanced understanding of the gap between intellectual and adaptive functioning in autistic young adults without intellectual disability. Lay abstract Adaptive functioning describes the age-appropriate skills necessary for independent living. Research suggests that autistic children, adolescents, and adults who do not have an intellectual disability demonstrate adaptive functioning challenges relative to their intellectual ability. Thus, even though many of these individuals have the intellectual capacity to excel in mainstream educational and vocational settings, their adaptive functioning challenges may serve as an obstacle to independence. The research on adaptive functioning in autistic adults is focused on statistical analysis of standardized assessments (e.g. parent-report on multiple choice questionnaires). Qualitative research that examines the narratives of young adults and their parents is needed to better understand adaptive functioning in young adults and their resulting service needs. This study combined statistical analysis of standardized assessments with qualitative analysis of interview responses from autistic young adults without intellectual disability and their parents. Findings replicated previous reports of adaptive functioning challenges and identified influences on adaptive functioning development, consequences of independence, and service needs. Taken together, findings indicate the need for interventions and services that facilitate adaptive functioning development in autistic adolescents and young adults and provide insight into potential intervention targets and strategies.

scholarly journals Evidence of validity and reliability of the adaptive functioning scale for intellectual disability (EFA-DI)

2020 ◽  
Vol 33 (1) ◽  
Author(s):  
Thais Selau ◽  
Mônia Aparecida da Silva ◽  
Euclides José de Mendonça Filho ◽  
Denise Ruschel Bandeira
Keyword(s):  
Intellectual Disability ◽  
Adaptive Functioning ◽  
Validity And Reliability ◽  
Theory Analysis ◽  
International Context ◽  
Systematic Assessment ◽  
Diagnostic And Statistical Manual ◽  
Item Response Theory Analysis ◽  
New Instrument ◽  
Confirmatory Factor

Abstract Intellectual disability (ID) is a developmental disorder characterized by deficits in intellectual functioning and adaptive behavior. The fifth edition of the Diagnostic and statistical manual of mental disorders (DSM-5) defines adaptive functioning as a severity measure of ID. The availability of tests in the international context to assess this construct has increased in recent years. In Brazil, however, non-systematic assessment of adaptive functioning, such as through observation and interviews, still predominates. The Escala de Funcionamento Adaptativo para Deficiência Intelectual EFA-DI [Adaptive Functioning Scale for Intellectual Disabilities] is a new instrument developed in Brazil to assess the adaptive functioning of 7- to 15-year-old children and support the diagnosis of ID. This study’s objectives were to investigate evidence of validity related to the EFA-DI’s internal structure, criterion validity, and reliability. The psychometric analyses involved two statistical modeling types, confirmatory factor analysis (CFA) and item response theory analysis (IRT). These results highlight the EFA-DI scale’s strong psychometric properties and support its use as a parental report measure of young children’s adaptive functioning. Future studies will be conducted to develop norms of interpretation for the EFA-DI. This study is expected to contribute to the fields of psychological assessment and child development in Brazil.

scholarly journals Effect of Core Stabilizing Training on Young Individuals Presenting Different Stages of Degenerative Disc Disease—Preliminary Report

2021 ◽  
Vol 18 (7) ◽  
pp. 3499
Author(s):  
Tomasz Kuligowski ◽  
Błażej Cieślik ◽  
Natalia Kuciel ◽  
Agnieszka Dębiec-Bąk ◽  
Anna Skrzek
Keyword(s):  
Lumbar Spine ◽  
Outcome Measures ◽  
Degenerative Disc Disease ◽  
Preliminary Report ◽  
Primary Outcome ◽  
Core Stability ◽  
Post Intervention ◽  
Disc Disease ◽  
Degenerative Disc

The aim of this study was to assess the efficacy of stabilizing training for the deep core muscles of the lumbar spine in subjects with degenerative disc disease. This study was conducted on 38 participants. The participants were divided into two groups: the extrusion group (EXT, n = 17) and the protrusion group (PRO, n = 21). All the subjects underwent a four-week-long core stability exercise-based treatment (five sessions/week). Clinical outcome measures were assessed pre-intervention (pre), post-intervention (post) and four weeks after the intervention (follow-up). The primary outcome measures were the spinal range of motion (ROM; Spinal Mouse® device) and the Oswestry Disability Index (ODI). In the PRO group, the ROM decreased from 88.52° pre-intervention to 83.33° post-intervention and to 82.82° at follow-up (p = 0.01), while the ODI decreased from 16.14 points pre-intervention to 6.57 points post-intervention, with 9.42 points at follow-up (p < 0.01). In the EXT group, the ROM decreased from 81.00° pre-intervention to 77.05° post-intervention, then increased to 77.94° at follow-up (p = 0.03), while the ODI decreased from 22.58 points pre-intervention to 15.41 points post-intervention and to 14.70 points at follow-up (p < 0.001). Although the stabilizing exercise sessions improved the clinical outcomes in each group, we cannot make conclusions as to whether the type of intervertebral disc damage significantly affects the results of stabilizing exercise-based treatment.

scholarly journals Patterns of multimorbidity and their effects on adverse outcomes in rheumatoid arthritis: a study of 5658 UK Biobank participants

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038829
Author(s):  
Ross McQueenie ◽  
Barbara I Nicholl ◽  
Bhautesh D Jani ◽  
Jordan Canning ◽  
Sara Macdonald ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Outcome Measures ◽  
Primary Outcome ◽  
Adverse Outcomes ◽  
Major Adverse Cardiovascular Events ◽  
Uk Biobank ◽  
Long Term Conditions ◽  
Increased Risk ◽  
All Cause Mortality ◽  
Clinical Records

ObjectiveTo investigate how the type and number of long-term conditions (LTCs) impact on all-cause mortality and major adverse cardiovascular events (MACE) in people with rheumatoid arthritis (RA).DesignPopulation-based longitudinal cohort study.SettingUK Biobank.ParticipantsUK Biobank participants (n=502 533) aged between 37 and 73 years old.Primary outcome measuresPrimary outcome measures were risk of all-cause mortality and MACE.MethodsWe examined the relationship between LTC count and individual comorbid LTCs (n=42) on adverse clinical outcomes in participants with self-reported RA (n=5658). Risk of all-cause mortality and MACE were compared using Cox’s proportional hazard models adjusted for lifestyle factors (smoking, alcohol intake, physical activity), demographic factors (sex, age, socioeconomic status) and rheumatoid factor.Results75.7% of participants with RA had multimorbidity and these individuals were at increased risk of all-cause mortality and MACE. RA and >4 LTCs showed a threefold increased risk of all-cause mortality (HR 3.30, 95% CI 2.61 to 4.16), and MACE (HR 3.45, 95% CI 2.66 to 4.49) compared with those without LTCs. Of the comorbid LTCs studied, osteoporosis was most strongly associated with adverse outcomes in participants with RA compared with those without RA or LTCs: twofold increased risk of all-cause mortality (HR 2.20, 95% CI 1.55 to 3.12) and threefold increased risk of MACE (HR 3.17, 95% CI 2.27 to 4.64). These findings remained in a subset (n=3683) with RA diagnosis validated from clinical records or medication reports.ConclusionThose with RA and other LTCs, particularly comorbid osteoporosis, are at increased risk of adverse outcomes, although the role of corticosteroids could not be evaluated in this study. These results are clinically relevant for the monitoring and management of RA across the healthcare system, and future clinical guidelines for RA should acknowledge the importance of multimorbidity.

scholarly journals Computerised cognitive–behavioural therapy for adults with intellectual disability: randomised controlled trial

2017 ◽  
Vol 211 (2) ◽  
pp. 95-102 ◽  
Author(s):  
Patricia Cooney ◽  
Catherine Jackman ◽  
David Coyle ◽  
Gary O'Reilly
Keyword(s):  
Intellectual Disability ◽  
Randomised Controlled Trial ◽  
Primary Outcome ◽  
Outcome Measure ◽  
Controlled Trial ◽  
Behavioural Therapy ◽  
Primary Outcome Measure ◽  
Cognitive Behavioural ◽  
Randomised Controlled

BackgroundDespite the evidence base for computer-assisted cognitive–behavioural therapy (CBT) in the general population, it has not yet been adapted for use with adults who have an intellectual disability.AimsTo evaluate the utility of a CBT computer game for adults who have an intellectual disability.MethodA 2 × 3 (group × time) randomised controlled trial design was used. Fifty-two adults with mild to moderate intellectual disability and anxiety or depression were randomly allocated to two groups: computerised CBT (cCBT) or psychiatric treatment as usual (TAU), and assessed at pre-treatment, post-treatment and 3-month follow-up. Forty-nine participants were included in the final analysis.ResultsA significant group x time interaction was observed on the primary outcome measure of anxiety (Glasgow Anxiety Scale for people with an Intellectual Disability), favouring cCBT over TAU, but not on the primary outcome measure of depression (Glasgow Depression Scale for people with a Learning Disability). A medium effect size for anxiety symptoms was observed at post-treatment and a large effect size was observed after follow-up. Reliability of Change Indices indicated that the intervention produced clinically significant change in the cCBT group in comparison with TAU.ConclusionsAs the first application of cCBT for adults with intellectual disability, this intervention appears to be a useful treatment option to reduce anxiety symptoms in this population.

scholarly journals A report on an acute, in-hours, outpatient review clinic with ultrasonography facilities for the early evaluation of general surgical patients

2016 ◽  
Vol 98 (7) ◽  
pp. 468-474 ◽  
Author(s):  
TE Pidgeon ◽  
U Shariff ◽  
F Devine ◽  
V Menon
Keyword(s):  
Computed Tomography ◽  
Primary Outcome ◽  
Surgical Patients ◽  
Clinic Attendance ◽  
Early Evaluation ◽  
Admission Rates ◽  
Before And After ◽  
Age Range ◽  
Surgical Clinic

Introduction In 2013 our hospital introduced an in-hours, consultant-led, outpatient acute surgical clinic (ASC) for emergency general surgical patients. In 2014 this clinic was equipped with a dedicated ultrasonography service. This prospective cohort study evaluated this service before and after the introduction of ultrasonography facilities. Methods Data were recorded prospectively for all patients attending the clinic during 2013 and 2014. The primary outcome was patient destination (whether there was follow-up/admission) after clinic attendance. Results The ASC reviewed patients with a wide age range and array of general surgical complaints. In 2013, 186 patients attended the ASC. After the introduction of the ultrasonography service in 2014, 304 patients attended. In 2014, there was a reduction in the proportion of patients admitted to hospital from the clinic (18.3% vs 8.9%, p=0.002). However, the proportion of patients discharged after ASC review remained comparable with 2013 (30.1% in 2013 vs 38.8% in 2014, p=0.051). The proportion of patients undergoing computed tomography (CT) scans also fell (14.0% vs 4.9%, p<0.001). Conclusions The ASC assessed a wide array of general surgical complaints. Only a small proportion required hospital admission. The introduction of an ultrasonography service was associated with a further reduction in admission rates and computed tomography.

scholarly journals A Virtual Reality-Based Self-Help Intervention for Dealing with the Psychological Distress Associated with the COVID-19 Lockdown: An Effectiveness Study with a Two-Week Follow-Up

2021 ◽  
Vol 18 (15) ◽  
pp. 8188
Author(s):  
Giuseppe Riva ◽  
Luca Bernardelli ◽  
Gianluca Castelnuovo ◽  
Daniele Di Lernia ◽  
Cosimo Tuena ◽  
...  
Keyword(s):  
Virtual Reality ◽  
Psychological Distress ◽  
Outcome Measures ◽  
Perceived Stress ◽  
Social Connectedness ◽  
Primary Outcome ◽  
Post Intervention ◽  
Stress Levels ◽  
Secondary Outcomes

The aim of this study is to investigate the effectiveness of a novel self-administered at-home daily virtual reality (VR)-based intervention (COVID Feel Good) for reducing the psychological burden experienced during the COVID-19 lockdown in Italy. A total of 40 individuals who had experienced at least two months of strict social distancing measures followed COVID Feel Good between June and July 2020 for one week. Primary outcome measures were depression, anxiety, and stress symptoms, perceived stress levels, and hopelessness. Secondary outcomes were the experienced social connectedness and the level of fear experienced during the COVID-19 pandemic. Linear mixed-effects models were fitted to evaluate the effectiveness of the intervention. Additionally, we also performed a clinical change analysis on primary outcome measures. As concerning primary outcome measures, participants exhibited improvements from baseline to post-intervention for depression levels, stress levels, general distress, and perceived stress (all p < 0.05) but not for the perceived hopelessness (p = 0.110). Results for the secondary outcomes indicated an increase in social connectedness from T0 to T1 (p = 0.033) but not a significant reduction in the perceived fear of coronavirus (p = 0.412). Among these study variables, these significant improvements were maintained from post-intervention to the 2-week follow-up (p > 0.05). Results indicated that the intervention was associated with good clinical outcomes, low-to-no risks for the treatment, and no adverse effects or risks. Globally, evidence suggests a beneficial effect of the proposed protocol and its current availability in 12 different languages makes COVID Feel Good a free choice for helping individuals worldwide to cope with the psychological distress associated with the COVID-19 crisis, although large scale trials are needed to evaluate its efficacy.

scholarly journals Evaluating measures of quality of life in adult scoliosis: a protocol for a systematic review and narrative synthesis

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
James E. Archer ◽  
Charles Baird ◽  
Adrian Gardner ◽  
Alison B. Rushton ◽  
Nicola R. Heneghan
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Study Design ◽  
Systematic Reviews ◽  
Primary Outcome ◽  
Adult Scoliosis ◽  
Measurement Properties ◽  
Narrative Synthesis

Abstract Background Adult scoliosis represents a distinct subgroup of scoliosis patients for whom the diagnosis can have a large impact on their health-related quality of life (HR-QOL). Therefore, HR-QOL patient-reported outcome measures (PROMs) are essential to assess disease progression and the impact of interventions. The objective of this systematic review is to evaluate the measurement properties of HR-QOL PROMs in adult scoliosis patients. Methods We will conduct a literature search, from their inception onwards, of multiple electronic databases including AMED, CINAHL, EMBASE, Medline, PsychINFO and PubMed. The searches will be performed in two stages. For both stages of the search, participants will be aged 18 and over with a diagnosis of scoliosis. The primary outcome of interest in the stage one searches will be studies which use PROMs to investigate HR-QOL as defined by the Core Outcome Measures in Effectiveness Trials (COMET) taxonomy, the secondary outcome will be to assess the frequency of use of the various PROMs. In stage two, the primary outcome of interest will be studies which assess the measurement properties of the HR-QOL PROMs identified in stage one. No specific measurement property will be given priority. No planned secondary outcomes have been identified but will be reported if discovered. In stage one, the only restriction on study design will be the exclusion of systematic reviews. In Stage two the only restriction on study design will be the exclusion of full-text articles not available in the English language. Two reviewers will independently screen all citations and abstract data. Potential conflicts will be resolved through discussion. The study methodological quality (or risk of bias) will be appraised using the Consensus-based Standards for the selection of Health Measurement Instruments (COSMIN) checklist. The overall strength of the body of evidence will then be assessed using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach. A narrative synthesis will be provided with information presented in the main text and tables to summarise and explain the characteristics and findings of the included studies. The narrative synthesis will explore the evidence for currently used PROMs in adult scoliosis patients and any areas that require further study. Discussion The review will help clinicians and researchers identify a HR-QOL PROM for use in patients with adult scoliosis. Findings from the review will be published and disseminated through a peer-reviewed journal and conference presentations. Systematic review registration This systematic review has been registered with the International Prospective Register of Systematic Reviews (PROSPERO), reference number: CRD42020219437

Sign in / Sign up

Export Citation Format

Share Document