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1.
Autism ; : 13623613231219743, 2023 Dec 27.
Article in English | MEDLINE | ID: mdl-38149622

ABSTRACT

LAY ABSTRACT: The "double empathy problem" refers to breakdowns in communication and understanding that frequently occur between autistic and non-autistic people. Previous studies have shown that autistic people often establish better rapport and connection when interacting with other autistic people compared to when interacting with non-autistic people, but it is unclear whether this is noticeable to non-autistic observers. In this study, 102 non-autistic undergraduate students viewed and rated video recordings of "get to know you" conversations between pairs of autistic and non-autistic adults. Sometimes the pairs were two autistic people, sometimes they were two non-autistic people, and sometimes they were "mixed" interactions of one autistic and one non-autistic person. Observers tended to rate non-autistic participants and their interactions the most favorably, but-consistent with the "double empathy problem"-they rated mixed interactions between autistic and non-autistic people as the least successful. They also perceived that only non-autistic people disclosed more when interacting with a non-autistic conversation partner. Autistic participants' partners in the conversations tended to evaluate them more favorably than did outside observers, suggesting that personal contact may facilitate more positive evaluations of autistic people. Furthermore, observers expressed less social interest in participants than did the autistic and non-autistic participants in the interactions. Together, these findings suggest that non-autistic observers both detect and demonstrate some aspects of the double empathy problem.

2.
Front Psychiatry ; 14: 1263525, 2023.
Article in English | MEDLINE | ID: mdl-37965364

ABSTRACT

Introduction: While stigma toward autistic individuals has been well documented, less is known about how autism is perceived relative to other stigmatized disabilities. As a highly stigmatized condition with similar social cognitive features to autism, schizophrenia may offer a useful comparison for stigma. Previous studies have found that autistic people may be perceived more favorably than those with schizophrenia, but little is known about the underlying volitional thoughts that contribute to differences in how these conditions are perceived. Methods: The present study utilizes a mixed-methods approach, allowing for a detailed understanding of how young adults perceive different diagnostic labels. 533 college undergraduates completed questionnaires reflecting their perceptions of one of eight diagnostic labels: four related to autism (autism, autistic, autism spectrum disorder, or Asperger's), two related to schizophrenia (schizophrenia or schizophrenic), and two related to an unspecified clinical condition (clinical diagnosis or clinical disorder). Participants also completed an open-ended question regarding their thoughts about, and exposure to, these labels. Responses were compared across broader diagnostic categories (autism, schizophrenia, general clinical condition), with thematic analysis used to assess the broader themes occurring within the open-ended text. Results: While perceptions did not differ significantly for person-first and identity-first language within labels, several differences were apparent across labels. Specifically, quantitative results indicated greater prejudice towards autism and schizophrenia than the generic clinical condition, with schizophrenia associated with more perceived fear and danger, as well as an increased preference for social distance, compared to autism. Patterns in initial codes differed across diagnostic labels, with greater variation in responses about autism than responses about schizophrenia or the general clinical condition. While participants described a range of attitudes toward autism (patronizing, exclusionary, and accepting) and schizophrenia (fear, prejudice, and empathy), they refrained from describing their attitudes toward the general clinical label, highlighting the centrality of a cohesive group identity for the development of stigma. Finally, participants reported a number of misconceptions about autism and schizophrenia, with many believing features such as savant syndrome to be core characteristics of the conditions. Conclusion: These findings offer a more detailed account of how non-autistic individuals view autism and may therefore aid in the development of targeted programs to improve attitudes toward autism.

3.
Front Psychiatry ; 14: 1251058, 2023.
Article in English | MEDLINE | ID: mdl-37720894

ABSTRACT

Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, clinical, and educational settings devote their careers to trying to improve such outcomes. However, we maintain that real progress cannot happen without a fundamental mindshift. The status quo for professionals is to view autism as an illness. Instead, the neurodiversity movement encourages us to value and embrace autism as an aspect of human diversity and asks us to view Autistic people as a marginalized group that experiences significant disparities. While some professionals may be adopting language and concepts from the neurodiversity movement, we argue that making this mindshift fundamentally changes our practice across research, clinical, and educational settings. In this perspective, we call on professionals to embrace this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and help Autistic adults live fulfilling lives.

4.
J Autism Dev Disord ; 2023 Aug 02.
Article in English | MEDLINE | ID: mdl-37530916

ABSTRACT

Prior research has demonstrated that cognitive inflexibility is associated with anxiety in autistic individuals. Everyday patterns of behavioral inflexibility (e.g. observable inflexible behavior in the context of the need to change or adapt and that is manifested in real-world everyday settings) is common in autism and can be distinguished from performance on discrete cognitive tasks that tap flexible attention, learning, or decision-making. The purpose of this study was to extend this prior work on inflexibility in autism but with measures specifically developed with input from stakeholders (caregivers and clinicians) for autistic youth designed to measure everyday behavioral inflexibility (BI). We characterized anxiety in a large sample of autistic (N = 145) and non-autistic youth (N = 91), ages 3 to 17 years, using the Parent Rated Anxiety Scale for Autism Spectrum Disorder (PRAS-ASD). Further, we sought to understand how BI, measured via the Behavioral Inflexibility Scale (BIS), predicted anxiety compared to other variables known to increase anxiety in youth (chronological age, IQ, autism diagnosis, assigned sex at birth). Autistic youth had higher parent-related anxiety and BI compared to non-autistic youth. BI was the strongest predictor of anxiety scores, irrespective of diagnosis. Overall, our findings highlight the importance of BI to the understanding of anxiety in autistic youth.

5.
J Cancer Educ ; 38(1): 206-214, 2023 02.
Article in English | MEDLINE | ID: mdl-34841496

ABSTRACT

Cancer disparities continue among American Indian and Alaska Native (AI/AN) populations while they have decreased among other racial and ethnic groups. No studies were found that utilized the Community Readiness Model (CRM) to ascertain the readiness of Tribal and American Indian organizations to participate in cancer research and cancer prevention and control initiatives. The Partnership for Native American Cancer Prevention conducted an assessment of the status of American Indian communities' readiness to implement activities for prevention, early detection, and treatment to improve AI/AN cancer rates. The assessment was a component of the Community Outreach Core of the grant. Thirty-four key Informants participated in the interview process. The Community Readiness Assessment (CRA) provided a baseline assessment of community partners' readiness to participate in cancer research and programming. Despite years of cancer intervention programs, the communities were classified as being in the early stages of readiness [1-5] of the nine-stage model. Additionally, findings showed low levels of awareness of previous or ongoing cancer research. The findings in prevention and control efforts indicated a need for technical assistance and funding to support community projects in prevention and control. This supported the implementation of a community grants initiative. They also indicated that communities were not ready to conduct research, despite ongoing cancer related research in at least two communities. Communication tools and social media methods and messages were developed to increase awareness of cancer as a health concern and cancer research in the community. The CRM informed these and other engagement activities to meet the appropriate stage of readiness for each Tribe/community, and to build their capacity to participate in cancer research and programming activities.


Subject(s)
Indians, North American , Neoplasms , Humans , American Indian or Alaska Native , Ethnicity , Neoplasms/prevention & control
6.
J Autism Dev Disord ; 2022 Dec 09.
Article in English | MEDLINE | ID: mdl-36484964

ABSTRACT

PURPOSE: The study objective was to determine if the validated Behavioral Inflexibility Scale (BIS) is sensitive to the detection of developmental changes in inflexibility in a sample of autistic children. METHODS: Parents of autistic children (n = 146, 3-17 years) completed the BIS at two time points, one year apart, to examine change. RESULTS: The findings indicate the BIS is sensitive to the detection of developmental changes and that child-level variables are not associated with those changes. Children's Time 1 BIS scores predicted children's severity on an independent outcome measure. Finally, a relationship between total services children were receiving and change in BIS scores over time was not found. CONCLUSION: The findings suggest the BIS is a reasonable candidate for consideration as an outcome measure.

7.
J Autism Dev Disord ; 52(10): 4592-4596, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35596025

ABSTRACT

The Behavioral Inflexibility Scale (BIS) is a recently developed measure of behavioral inflexibility, defined as rigid patterns of behavior that contrast with the need to be flexible when the situation calls for it. In this study, we sought to replicate previous findings on the psychometric properties of the BIS in a community sample. Data for this study were collected using in-person assessments of 163 autistic and 95 non-autistic children ages 3-17 and included the BIS, measures of social-communication ability and repetitive behaviors, and an assessment of cognitive ability. Our findings replicate the psychometric properties of the BIS, indicating that the measure is a valid measure of behavioral inflexibility in ASD.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adolescent , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/psychology , Child , Child, Preschool , Cognition , Communication , Humans , Psychometrics
8.
Curr Hypertens Rep ; 24(5): 107-114, 2022 05.
Article in English | MEDLINE | ID: mdl-35181832

ABSTRACT

PURPOSE OF REVIEW: The latest national data reports a 55% prevalence of metabolic syndrome in American Indian adults compared to 34.7% of the general US adult population. Metabolic syndrome is a strong predictor for diabetes, which is the leading cause of heart disease in American Indian and Alaska Native populations. Metabolic syndrome and associated risk factors disproportionately impact this population. We describe the presentation, etiology, and roles of structural racism and social determinants of health on metabolic syndrome. RECENT FINDINGS: Much of what is known about metabolic syndrome in American Indian and Alaska Native populations comes from the Strong Heart Study as there is scant literature. American Indian and Alaska Native adults have an increased propensity towards metabolic syndrome as they are 1.1 times more likely to have high blood pressure, approximately three times more likely to have diabetes, and have higher rates of obesity compared with their non-Hispanic White counterparts. Culturally informed lifestyle and behavior interventions are promising approaches to address structural racism and social determinants of health that highly influence factors contributing to these rates. Among American Indian and Alaska Native populations, there is scarce updated literature evaluating the underlying causes of major risk factors for metabolic syndrome, and progression to cardiometabolic disease. As a result, the actual state of metabolic syndrome in this population is not well understood. Systemic and structural changes must occur to address the root causes of these disparities.


Subject(s)
Hypertension , Indians, North American , Metabolic Syndrome , Adult , Humans , Metabolic Syndrome/epidemiology , American Indian or Alaska Native
9.
J Autism Dev Disord ; 52(2): 689-699, 2022 Feb.
Article in English | MEDLINE | ID: mdl-33761062

ABSTRACT

This study evaluates the feasibility of the NIH Toolbox Cognition Battery (NIH-TCB) for use in autism spectrum disorder (ASD). 116 autistic children and adolescents and 80 typically developing (TD) controls, ages 3-17 years, completed four NIH-TCB tasks related to inhibitory control, cognitive flexibility, processing speed, and episodic memory. While the majority of autistic and TD children completed all four tasks, autistic children experienced greater difficulties with task completion. Across autistic and TD children, performance on NIH-TCB tasks was highly dependent on IQ, but significant performance differences related to ASD diagnosis were found for two of four tasks. These findings highlight the potential strengths and limitations of the NIH-TCB for use with autistic children.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adolescent , Autism Spectrum Disorder/diagnosis , Child , Child, Preschool , Cognition , Feasibility Studies , Humans
10.
J Geriatr Oncol ; 13(2): 234-240, 2022 03.
Article in English | MEDLINE | ID: mdl-34446377

ABSTRACT

Older adults with Hematologic Malignancy (HM) are vulnerable to functional decline secondary to disease and treatment. Interventions for physical deconditioning, in concert with routine hematology care are limited. The feasibility of accrual, retention, and demand for an exercise intervention among a high-risk HM population was piloted. METHODS: Older adults with HM, on active treatment, with functional impairment were recruited prospectively to participate in a 6-month Otago Exercise Programme (OEP). Measures of motivation, self-efficacy, patient identified barriers to exercise, barriers to clinical trial enrollment, study satisfaction, and serious adverse events were captured. RESULTS: 63 patients were approached, 18 declined trial enrollment, 45 consented, 30 patients enrolled in the exercise program. The main barrier for trial enrollment was transportation/travel concerns (n = 15). Of the 45 consented participants, 8 (12.7%) dropped out due to clinical deterioration, 5 (7.9%) withdrew, and 2 (3.2%) were ineligible prior to exercise-intervention intiation. The median age was 75.5 years (range 62-83) with plasma cell dyscrasia (63%), non-Hodgkin lymphoma (20%) and leukemia (17%). Retention of the physical therapist (PT) led-OEP was 76.6% of patients (n = 23/30), and end-of-study retention was 66.7% (n = 20/30). Of the evaluable patients, 23/29 completed the PE-led OEP yielding a completion rate of 79%. Participants were extremely motivated (72.4%) and strongly intended (89.7%) to engage in regular physical activity. Exercising when tired increased from a median score of 50 at Visit 1 to 70 at Visit 2, but dropped significantly to 45 at Visit 3 (p < 0.001). Participants reported significantly lower self-efficacy to exercise over the next 6 months from Visit 1 to Visit 3 (p = 0.001). CONCLUSIONS: Older patients with HM had higher completion of in-person, PT-led exercise compared to at-home, independent exercise. Older adults were motivated and found the program acceptable, yet the ability to sustain a structured exercise program was challenging due to changes in health status. ClinicalTrials.gov Identifier: NCT02791737.


Subject(s)
Exercise , Hematologic Neoplasms , Aged , Aged, 80 and over , Clinical Trials as Topic , Exercise Therapy , Feasibility Studies , Hematologic Neoplasms/therapy , Humans , Middle Aged , Patient Participation , Self Efficacy
11.
Autism Res ; 15(3): 413-420, 2022 03.
Article in English | MEDLINE | ID: mdl-34939747

ABSTRACT

Circumstances surrounding the COVID-19 pandemic have resulted in significant personal and professional adjustments. Students and trainees, including those in autism research, face unique challenges to accomplishing their training and career goals during this unprecedented time. In this commentary, we, as members of the International Society for Autism Research Student and Trainee Committee, describe our personal experiences, which may or may not align with those of other students and trainees. Our experiences have varied both in terms of the ease (or lack thereof) with which we adapted and the degree to which we were supported in the transition to online research and clinical practice. We faced and continue to adjust to uncertainties about future training and academic positions, for which opportunities have been in decline and have subsequently negatively impacted our mental health. Students and trainees' prospects have been particularly impacted compared to more established researchers and faculty. In addition to the challenges we have faced, however, there have also been unexpected benefits in our training during the pandemic, which we describe here. We have learned new coping strategies which, we believe, have served us well. The overarching goal of this commentary is to describe these experiences and strategies in the hope that they will benefit the autism research community moving forward. Here, we provide a set of recommendations for faculty, especially mentors, to support students and trainees as well as strategies for students and trainees to bolster their self-advocacy, both of which we see as crucial for our future careers. LAY SUMMARY: The COVID-19 pandemic has affected students and trainees, including those in autism research, in different ways. Here, we describe our personal experiences. These experiences include challenges. For example, it has been difficult to move from in-person to online work. It has also been difficult to keep up with work and training goals. Moreover, working from home has made it hard to connect with our supervisors and mentors. As a result, many of us have felt unsure about how to make the best career choices. Working in clinical services and getting to know and support our patients online has also been challenging. Overall, the pandemic has made us feel more isolated and some of us have struggled to cope with that. On the other hand, our experiences have also included benefits. For example, by working online, we have been able to join meetings all over the world. Also, the pandemic has pushed us to learn new skills. Those include technical skills but also skills for well-being. Next, we describe our experiences of returning to work. Finally, we give recommendations for trainees and supervisors on how to support each other and to build a strong community.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Humans , Pandemics , Students
12.
Front Psychol ; 12: 739147, 2021.
Article in English | MEDLINE | ID: mdl-34630251

ABSTRACT

Bi-directional differences in social communication and behavior can contribute to poor interactions between autistic and non-autistic (NA) people, which in turn may reduce social opportunities for autistic adults and contribute to poor outcomes. Historically, interventions to improve social interaction in autism have focused on altering the behaviors of autistic people and have ignored the role of NA people. Recent efforts to improve autism understanding among NA adults via training have resulted in more favorable views toward autistic people, yet it remains unknown whether these benefits extend to real-world interactions between autistic and NA people. The current study explores whether a brief autism acceptance training (AAT) program can improve social interactions between autistic and NA adults. Thirty-nine NA males were randomly assigned to complete AAT or a no-training control condition, then participated in a 5-min unstructured conversation with an unfamiliar autistic male (n = 39). Following the conversation, participants rated their perceptions of interaction quality, first impressions of their partner, and their interest in future interactions with their partner. In dyads where the NA individual completed AAT, both the autistic and NA person endorsed greater future interest in hanging out with their partner relative to dyads in which the NA adult did not complete AAT. However, other social interaction outcomes, including ratings of interaction quality and first impressions of autistic partners, largely did not differ between training and no-training conditions, and assessments of the interaction were largely unrelated for autistic and NA partners within dyads. Results also indicated that NA participants, but not autistic participants, demonstrated substantial correspondence between evaluations of their partner and the interaction, suggesting that autistic adults may place less weight on trait judgments when assessing the quality of an interaction. These findings suggest that the brief AAT for NA adults used in this study may increase mutual social interest in real-world interactions between NA and autistic adults, but more systematic changes are likely needed to bridge divides between these individuals. Future work with larger, more diverse samples is recommended to further explore whether interventions targeting NA adults are beneficial for improving autistic experiences within NA social environments.

14.
J Natl Compr Canc Netw ; 19(9): 1027-1036, 2021 03 26.
Article in English | MEDLINE | ID: mdl-33770752

ABSTRACT

BACKGROUND: Gauging fitness remains a challenge among older adults with hematologic malignancies, and interventions to restore function are lacking. We pilot a structured exercise intervention and novel biologic correlates of aging using epigenetic clocks and markers of immunosenescence to evaluate changes in function and clinical outcomes. METHODS: Older adults (n=30) with hematologic malignancy actively receiving treatment were screened and enrolled in a 6-month exercise intervention, the Otago Exercise Programme (OEP). The impact of the OEP on geriatric assessment metrics and health-related quality of life were captured. Clinical outcomes of overall survival and hospital utilization (inpatient length of stay and emergency department use) in relationship to geriatric deficits were analyzed. RESULTS: Older adults (median age, 75.5 years [range, 62-83 years]) actively receiving treatment were enrolled in the OEP. Instrumental activities of daily living and physical health scores (PHS) increased significantly with the OEP intervention (median PHS: visit 1, 55 [range, 0-100]; visit 2, 70 [range, 30-100]; P<.01). Patient-reported Karnofsky performance status increased significantly, and the improvement was sustained (median [range]: visit 1, 80 [40-100]; visit 3, 90 [50-100]; P=.05). Quality of life (Patient-Reported Outcome Measurement Information System [PROMIS]) improved significantly by the end of the 6-month period (median [range]: visit 1, 32.4 [19.9-47.7]; visit 3, 36.2 [19.9-47.7]; P=.01]. Enhanced measures of gait speed and balance, using the Short Physical Performance Battery scores, were associated with a 20% decrease in risk of death (hazard ratio, 0.80; 95% CI, 0.65-0.97; P=.03) and a shorter hospital length of stay (decrease of 1.29 days; 95% CI, -2.46 to -0.13; P=.03). Peripheral blood immunosenescent markers were analyzed in relationship to clinical frailty and reports of mPhenoAge epigenetic analysis are preliminarily reported. Chronologic age had no relationship to overall survival, length of stay, or emergency department utilization. CONCLUSIONS: The OEP was effective in improving quality of life, and geriatric tools predicted survival and hospital utilization among older adults with hematologic malignancies.


Subject(s)
Activities of Daily Living , Hematologic Neoplasms , Aged , Aging , Geriatric Assessment , Hematologic Neoplasms/therapy , Humans , Phenotype , Quality of Life
15.
Autism ; 25(5): 1246-1261, 2021 07.
Article in English | MEDLINE | ID: mdl-33472382

ABSTRACT

LAY ABSTRACT: Autistic adults face prejudice from non-autistic people. They are often judged unfairly and left out of social activities because of their differences. This can make it difficult for autistic people to make friends and find jobs. Some training programs have tried to teach autistic people to act more like non-autistic people to help them gain acceptance. Fewer have focused on teaching non-autistic people how to be more autism friendly. In this study, we used a short training video that teaches people about autism. The video was created with the help of autistic adults and included clips of real autistic people. We found that non-autistic people who watched this video had better knowledge about autism and showed more autism-friendly attitudes than those who watched a video about mental health or those who did not watch any video. They were more open to having a relationship with an autistic person and had more positive beliefs about autism. However, our video did not affect people's unconscious attitudes about autism. People in our study connected autism with unpleasant traits, even if they had watched the autism training video. This suggests that teaching non-autistic people about autism may promote more autism-friendly attitudes, but some beliefs may be harder to change.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Attitude , Bias , Humans , Prejudice
16.
J Autism Dev Disord ; 51(7): 2354-2368, 2021 Jul.
Article in English | MEDLINE | ID: mdl-32951156

ABSTRACT

An aspect of metacognition associated with broader functional abilities in several clinical conditions, but previously unexamined in autism, is self-assessment (i.e., the ability to accurately self-evaluate one's own performance). We compared self-assessment between 37 autistic adults without intellectual disability to 39 non-autistic (NA) controls on a series of three general cognitive and three social cognitive tasks. Whereas autistic adults and NA adults did not differ in their self-assessment accuracy on general cognitive tasks, they did on social cognitive tasks, with autistic adults demonstrating lower accuracy. The direction of their inaccuracy was variable (i.e., both over and underestimation), and self-assessment was largely unrelated to their level of social functioning. Over versus underestimation may have different functional implications, and warrants future investigation.


Subject(s)
Autistic Disorder/psychology , Metacognition , Self-Assessment , Social Cognition , Activities of Daily Living/psychology , Adult , Case-Control Studies , Female , Humans , Male
17.
Front Psychol ; 11: 591100, 2020.
Article in English | MEDLINE | ID: mdl-33324295

ABSTRACT

Social cognition, social skill, and social motivation have been extensively researched and characterized as atypical in autistic people, with the assumption that each mechanistically contributes to the broader social interaction difficulties that diagnostically define the condition. Despite this assumption, research has not directly assessed whether or how these three social domains contribute to actual real-world social interaction outcomes for autistic people. The current study administered standardized measures of social cognition, social skill, and social motivation to 67 autistic and 58 non-autistic (NA) adults and assessed whether performance on these measures, both individually and relationally between dyadic partners, predicted outcomes for autistic and NA adults interacting with unfamiliar autistic and NA partners in a 5 minute unstructured "get to know you" conversation. Consistent with previous research, autistic adults scored lower than NA adults on the three social domains and were evaluated less favorably by their conversation partners. However, links between autistic adults' performance on the three social domains and their social interaction outcomes were minimal and, contrary to prediction, only the social abilities of NA adults predicted some interaction outcomes within mixed diagnostic dyads. Collectively, results suggest that reduced performance by autistic adults on standardized measures of social cognition, social skill, and social motivation do not correspond in clear and predictable ways with their real-world social interaction outcomes. They also highlight the need for the development and validation of more ecological assessments of autistic social abilities and the consideration of relational dynamics, not just individual characteristics, when assessing social disability in autism.

19.
BMC Geriatr ; 20(1): 231, 2020 07 06.
Article in English | MEDLINE | ID: mdl-32631254

ABSTRACT

BACKGROUND: Evidence-based practice in geriatric oncology is growing, and national initiatives have focused on expanding cancer care and research to improve health outcomes for older adults. However, there are still gaps between knowledge and practice for older adults with cancer. MAIN TEXT: Here we provide a detailed methodology of geriatric oncology care delivery within a single institution. The Cancer and Aging Resiliency (CARE) clinic is a multidisciplinary approach for implementing geriatric-driven health care for older adults with cancer. The CARE clinic was developed as a direct response to recommendations targeting key multifactorial geriatric health conditions (e.g. falls, nutritional deficits, sensory loss, cognitive impairment, frailty, multiple chronic conditions, and functional status). The multidisciplinary team assesses and delivers a comprehensive set of recommendations, all in one clinic visit, to minimize burden on the patient and the caregiver. The CARE clinic consultative model is a novel approach integrating cancer subspecialties with geriatric oncology healthcare delivery. CONCLUSIONS: Older adults with cancer have unique needs that are independent of routine oncology care. The CARE clinic model provides specific assessments and interventions to improve health outcomes among older adults with cancer.


Subject(s)
Geriatric Assessment , Neoplasms , Aged , Aging , Humans , Medical Oncology , Neoplasms/diagnosis , Neoplasms/epidemiology , Neoplasms/therapy , Referral and Consultation
20.
Autism Res ; 13(3): 489-499, 2020 03.
Article in English | MEDLINE | ID: mdl-31904198

ABSTRACT

Behavior inflexibility (BI) refers to rigid patterns of behavior that contrast with the need to be adaptable to changing environmental demands. We developed a parent-reported outcome measure of BI for children with autism spectrum disorder (ASD) and other developmental disabilities with a multi-step iterative process. A pool of 62 candidate items was generated through expert panel feedback, review of existing scales and focus groups. A consensus process was used to generate the final 38 items. Parents of 943 children (age range, 3-18 years; average, 11.4 years; 79% boys) with ASD completed an online survey. One hundred thirty-three parents rated their child twice within 3 weeks (average = 16.5 days). A series of factor analyses suggested that the 38 items measured a single construct. Scores had a weak correlation with level of functioning (-0.12) and did not differ based on sex. Scores had a negligible correlation with age (-0.07), although measurement invariance was not supported. The mean total score for the Behavioral Inflexibility Scale (BIS) was normally distributed. Internal consistency was α = 0.97 and temporal stability was r = 0.92. Correlations with parent ratings on the subscales of the Repetitive Behavior Scale-Revised varied from 0.48 to 0.89. The correlation with parent ratings on the Social Communication Questionnaire total score was 0.52. Our data show that BI in children with ASD ranges significantly from mild to severe and that the 38-item BIS is valid and reliable. Autism Res 2020, 13: 489-499. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc. LAY SUMMARY: We developed a parent-completed rating scale of behavior inflexibility (BI) for children with developmental disabilities using a multistep process. The Behavioral Inflexibility Scale (BIS) contains 38 questions rated on a 6-point scale. Parents of 943 children with autism spectrum disorder (ASD) completed an online survey. We examined associations between the BIS and other scales and demographic variables. The BIS is valid and reliable. BI in children with ASD ranges from mild to severe.


Subject(s)
Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/physiopathology , Surveys and Questionnaires/statistics & numerical data , Adolescent , Age Factors , Child , Child, Preschool , Developmental Disabilities/diagnosis , Developmental Disabilities/physiopathology , Factor Analysis, Statistical , Female , Focus Groups , Humans , Male , Parents , Sex Factors
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