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 & controlABSTRACT
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 NativeABSTRACT
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 LifeABSTRACT
Autologous stem cell transplant (ASCT) is the standard of care for patients with multiple myeloma (MM). The clinical significance of peripheral blood T lymphocyte (PBTL) immunologic changes associated with ASCT is poorly understood. Here we evaluated T cell transcriptional messenger RNA profiles and immunophenotypes to correlate immunologic senescence, exhaustion, and anergy with clinical endpoints in a cohort of patients with MM undergoing ASCT. ASCT induced global transcriptional T cell changes and altered molecular levels of markers of T cell subtypes, T cell activation, and exhaustion. These included reduced CD4/CD8 ratio, skewing toward the Th1 subset, reduced expression of costimulatory receptors CD27 and CD28, heightened T cell activation, and increased expression of immune modulatory molecules LAG3 and PD1. Multicolor flow cytometry experiments confirmed altered circulating CD4 and CD8 subsets and skewing toward differentiated effector cells. Moreover, ASCT promoted an exhausted immunophenotype in CD3+CD4+ subsets and a senescent immunophenotype in CD3+CD8+ subsets. Subset-specific altered expression was also seen for surface molecules with immunomodulatory function. ASCT affected soluble levels of molecules with immunomodulatory function by increasing plasma HVEM and TIM3. High molecular LAG3 level was associated with inferior event-free survival post-ASCT (hazard ratio = 5.44; confidence interval, 1.92 to 15.46; Pâ¯= .001; adjusted P [controlling for false discovery rate]â¯=â¯.038). Using a comprehensive evaluation of PBTLs on a molecular and phenotypic level, we have identified that ASCT induces global T cell alterations with CD4 and CD8 subset-specific changes. Moreover, LAG3 emerged as an early biomarker of adverse events post-ASCT. These findings will support the development of treatment strategies targeting immune defects in MM to augment or restore T cell responses.
Subject(s)
Antigens, CD/immunology , Biomarkers, Tumor/immunology , CD4-Positive T-Lymphocytes/immunology , CD8-Positive T-Lymphocytes/immunology , Gene Expression Profiling , Lymphocyte Activation , Multiple Myeloma/immunology , Neoplasm Proteins/immunology , Adult , Aged , Antigens, CD/blood , Autografts , Biomarkers, Tumor/blood , CD4-CD8 Ratio , CD4-Positive T-Lymphocytes/pathology , CD8-Positive T-Lymphocytes/metabolism , CD8-Positive T-Lymphocytes/pathology , Female , Hematopoietic Stem Cell Transplantation , Humans , Immunophenotyping , Male , Middle Aged , Multiple Myeloma/blood , Multiple Myeloma/therapy , Neoplasm Proteins/blood , Prospective Studies , Lymphocyte Activation Gene 3 ProteinABSTRACT
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 ConsultationABSTRACT
OBJECTIVES: Attachment of magnetic particles to cells is needed for a variety of applications but is not always possible or efficient. Simpler and more convenient methods are thus desirable. In this study, we tested the hypothesis that endothelial cells (EC) can be loaded with micron-size magnetic beads by the phagocytosis-like mechanism 'angiophagy'. To this end, human umbilical vein EC (HUVEC) were incubated with magnetic beads conjugated or not (control) with an anti-VEGF receptor 2 antibody, either in suspension, or in culture followed by re-suspension using trypsinization. RESULTS: In all conditions tested, HUVEC incubation with beads induced their uptake by angiophagy, which was confirmed by (i) increased cell granularity assessed by flow cytometry, and (ii) the presence of an F-actin rich layer around many of the intracellular beads, visualized by confocal microscopy. For confluent cultures, the average number of beads per cell was 4.4 and 4.2, with and without the presence of the anti-VEGFR2 antibody, respectively. However, while the actively dividing cells took up 2.9 unconjugated beads on average, this number increased to 5.2 if binding was mediated by the antibody. Magnetic pulldown increased the cell density of beads-loaded cells in porous electrospun poly-capro-lactone scaffolds by a factor of 4.5 after 5 min, as compared to gravitational settling (p < 0.0001). CONCLUSION: We demonstrated that EC can be readily loaded by angiophagy with micron-sized beads while attached in monolayer culture, then dispersed in single-cell suspensions for pulldown in porous scaffolds and for other applications.
Subject(s)
Endocytosis , Human Umbilical Vein Endothelial Cells/metabolism , Magnetics , Microspheres , Staining and Labeling/methods , Flow Cytometry , Humans , Microscopy, ConfocalABSTRACT
PURPOSE: Calcium aluminosilicate clay (CASAD) is a naturally occurring clay that serves as a cation exchange absorbent. We hypothesized that oral administration of CASAD would reduce the rate of grade 3/4 diarrhea associated with irinotecan use for metastatic colorectal cancer (CRC) by adsorbing the SN-38 metabolite. METHODS: Patients receiving irinotecan-based chemotherapy were randomized equally between CASAD and placebo arms in this multicenter trial in order to assess differences in the proportions of patients with grade 3/4 diarrhea within 6 weeks. Additionally, we compared symptom severity between the two arms using the M.D. Anderson Symptom Inventory. RESULTS: Between May 2009 and May 2012, 100 patients were enrolled. In evaluable patients, 7 of 43 (16 %) on the CASAD arm compared to 3 of 32 (9 %) on the placebo arm experienced grade 3/4 diarrhea (P = 0.70). The rate of any diarrhea among all patients was similar (CASAD arm, 64 % vs. placebo arm, 70 %). The rate of study dropout was 14 % in the CASAD arm and 38 % in the placebo arm (P = 0.01). No differences were found in symptom severity, individual symptom items, and in serious adverse events between the two arms. CONCLUSION: Compared to placebo, CASAD use was safe but ineffective in preventing diarrhea in metastatic CRC patients treated with irinotecan-containing chemotherapy regimens. There were no distinct signals in terms of patient symptoms between arms, but there was significantly more patient dropout in the placebo arm. Future CASAD trials will focus on the active treatment of diarrhea.
Subject(s)
Aluminum Silicates/therapeutic use , Antineoplastic Agents, Phytogenic/adverse effects , Camptothecin/analogs & derivatives , Colorectal Neoplasms/drug therapy , Diarrhea/prevention & control , Adult , Aged , Aged, 80 and over , Antineoplastic Agents, Phytogenic/administration & dosage , Camptothecin/administration & dosage , Camptothecin/adverse effects , Clay , Colorectal Neoplasms/pathology , Diarrhea/chemically induced , Double-Blind Method , Female , Humans , Irinotecan , Male , Middle Aged , Neoplasm Metastasis , Placebos , Treatment Outcome , Young AdultABSTRACT
OBJECTIVES: Chemotherapy-induced peripheral neuropathy is frequently a dose-limiting factor in cancer treatment and may cause pain and irreversible function loss in cancer survivors. We tested whether alpha-lipoic acid (ALA) could decrease the severity of peripheral neuropathy symptoms in patients undergoing platinum-based chemotherapy. METHODS: Cancer patients 18 years or older were randomly selected to receive either 600 mg ALA or a placebo three times a day orally for 24 weeks while receiving chemotherapy regimens including cisplatin or oxaliplatin. Neuropathy was measured by the Functional Assessment of Cancer Therapy/Gynecologic Oncology Group-Neurotoxicity (FACT/GOG-Ntx) scale and the NCI Common Toxicity Criteria for Adverse Events neurotoxicity grades. Results from timed functional tests and the Brief Pain Inventory (BPI) were secondary endpoints. RESULTS: Seventy of 243 (29 %) patients completed the study (24 weeks). Both the ALA and the placebo arms had a comparable drop-out rate. No statistically significant differences were found between the ALA and the placebo groups for FACT/GOG-Ntx scores, BPI scores, and patients' functional outcomes. CONCLUSION: This strategy of oral ALA administration was ineffective at preventing neurotoxicity caused by oxaliplatin or cisplatin. High attrition rates due to poor patient compliance and manner of dosage administration in this trial demonstrated a lack of feasibility for this intervention. Future studies to explore ALA as a neuroprotective agent should take heed of the barriers confronted in this study.
Subject(s)
Antineoplastic Combined Chemotherapy Protocols/adverse effects , Neoplasms/drug therapy , Neurotoxicity Syndromes/etiology , Neurotoxicity Syndromes/prevention & control , Peripheral Nervous System Diseases/chemically induced , Peripheral Nervous System Diseases/prevention & control , Thioctic Acid/therapeutic use , Administration, Oral , Aged , Aged, 80 and over , Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Cisplatin/administration & dosage , Cisplatin/adverse effects , Double-Blind Method , Female , Humans , Male , Middle Aged , Organoplatinum Compounds/administration & dosage , Organoplatinum Compounds/adverse effects , Oxaliplatin , Peripheral Nervous System Diseases/diagnosis , PlacebosABSTRACT
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.
Subject(s)
Autistic Disorder , Empathy , Humans , Male , Female , Young Adult , Autistic Disorder/psychology , Adult , Communication , Adolescent , Social Interaction , Social Perception , Interpersonal Relations , Video RecordingABSTRACT
BACKGROUND: Few studies have examined the acute effects of autologous hematopoietic stem cell transplantation (Au-HSCT) on the neuropsychological functioning of patients with multiple myeloma (MM). The prevalence of cognitive deficits after induction chemotherapy (pre-AuHSCT) was examined in patients with MM, clinically significant changes in cognitive function 1 and 3 months post-AuHSCT were determined, and patients who may be vulnerable to cognitive decline during this period were identified. METHODS: A total of 53 patients with MM were recruited pre-AuHSCT. Neuropsychological tests measuring multiple cognitive domains (attention, psychomotor speed, learning/memory, language, executive function, motor function) were administered pre-AuHSCT and 1 and 3 months post-AuHSCT. A pretreatment assessment was not available. An Overall Cognitive Function Index was computed to determine cognitive impairment pre-AuHSCT, and a practice-effect-adjusted Reliable Change Index was used to determine cognitive change over time. RESULTS: Overall, deficits were more frequent in learning/memory, executive function, motor function, and psychomotor speed. Before AuHSCT, 47% of patients (25/53) exhibited cognitive impairment as determined by the Overall Cognitive Function Index. One month post-AuHSCT, 49% of patients (20/41) demonstrated clinically significant decline on 1 or more measures; 3 months post-AuHSCT, 48% (14 of 29 patients) showed decline on 1 or more measures. Older patients, minorities, and those with advanced disease, more induction cycles, or postinduction deficits showed greater vulnerability to decline. CONCLUSIONS: Nearly half of the patients showed vulnerability to impairment in learning/memory or executive function after receiving induction therapy, and the prevalence of impairment remained high post-AuHSCT. Awareness of cognitive impairment and associated risk factors in actively treated patients is important for considering psychosocial or other support for patients with acute cognitive symptoms.
Subject(s)
Cognition Disorders/etiology , Hematopoietic Stem Cell Transplantation/adverse effects , Multiple Myeloma/therapy , Acute Disease , Executive Function/physiology , Female , Humans , Learning/physiology , Longitudinal Studies , Male , Memory/physiology , Middle Aged , Multiple Myeloma/complications , Transplantation, AutologousABSTRACT
PURPOSE: Competency-based assessment helps to improve performance and to standardize education programs for hospice and palliative care professionals. This paper aims to report the process and results of developing the hospice and palliative care competencies by multidisciplinary experts in Korea. METHODS: The competency development task force team of Korean hospice and palliative care professionals was comprised of seven physicians, four nurses, two social workers, and two clergy. To build consensus regarding competencies, the team performed a two-round Delphi survey. The importance of competency domains was assessed by using a 5-point Likert scale. After the completion of the Delphi survey, final competency domains were decided in a consensus meeting. RESULTS: The competencies were composed of knowledge, skills, and attitudes. The competency domains were identified as the following: 11 domains and 16 subdomains for physicians, 11 domains for nurses, 5 domains and 15 subdomains for social workers, as well as 3 domains and 5 subdomains for spiritual care providers. The high importance domains were different by specialties. Physical care and treatment for physicians, symptom management for nurses, bereavement care for social workers, and communication for spiritual care providers were ranked as highly important. For nurses and spiritual care providers, attitude-related domains were ranked the highest in importance. CONCLUSION: The competencies developed by multidisciplinary professionals are useful to identify the appropriate roles of each hospice and palliative care specialist involved in a team approach to patient care.
Subject(s)
Competency-Based Education/methods , Delphi Technique , Hospice Care/standards , Neoplasms/therapy , Palliative Care/standards , Competency-Based Education/standards , Education, Medical, Graduate , Education, Nursing, Graduate , Hospices , Humans , Nurses , Physicians , Republic of Korea , Social Work/educationABSTRACT
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.
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.
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.
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.
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 EfficacyABSTRACT
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 , HumansABSTRACT
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 , PsychometricsABSTRACT
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 , StudentsABSTRACT
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.