Evaluation of an adapted virtual training for master trainers of the WHO Caregiver Skills Training Program during the COVID-19 pandemic.

LAY ABSTRACT: The COVID-19 pandemic interrupted in-person professional activities. We developed and evaluated a remote training approach for master trainers of the Caregiver Skills Training Program. Master trainers support community practitioners, who in turn deliver the Caregiver Skills Training Program to caregivers of children with developmental delays or disabilities. The Caregiver Skills Training Program teaches caregivers how to use strategies to enhance learning and interactions during everyday play and home activities and routines with their child. The aim of this study was to evaluate the remote training of master trainers on Caregiver Skills Training Program. Twelve out of the 19 practitioners who enrolled in the training completed the study. The training consisted of a 5-day in-person session completed prior to the pandemic, followed by supporting participants' ability to identify Caregiver Skills Training Program strategies through coding of video recordings over 7 weekly meetings and group discussions and ended with participants independently coding a set of 10 videos for Caregiver Skills Training Program strategies. We found all but one participant was able to reliably identify Caregiver Skills Training Program strategies from video recordings despite a lack of ability to practice the Caregiver Skills Training Program strategies with children due to the pandemic. Taken together, our findings illustrate the feasibility and value of remote training approaches in implementing interventions.

World Health Organisation-Caregiver Skills Training (WHO-CST) Program: Feasibility of Delivery by Non-Specialist Providers in Real-world Urban Settings in India.

The World Health Organization-Caregiver Skills Training Program, a parent-mediated early intervention facilitated by non-specialist providers piloted in urban India was evaluated using mixed-methods for feasibility and effects on child and caregiver outcomes. Caregivers (n = 22) of children (2-9 years) with social-communication delays participated in a single-group pre-post study. High rates of caregiver attendance, improved caregiver fidelity, and facilitator competency suggested program feasibility. Caregivers voiced acceptability of various intervention-components. The intervention was associated with improved caregiver-reported skills and knowledge (p < 0.00), reduction in stress (p = 0.03), improved child developmental outcomes on communication and social interaction (p < 0.00), and adaptive behaviors (p < 0.00). Challenges about logistics and availability of time were highlighted. Implications of results in resource-poor settings and recommendations for future feasibility trials are discussed.

Implementing the WHO caregivers skills training program with caregivers of autistic children via telehealth in rural communities.

Background: For families with autistic children living in rural areas, limited access to services partly results from a shortage of providers and extensive travel time. Telehealth brings the possibility of implementing alternative delivery modalities of Parent Mediated Interventions (PMIs) with the potential to decrease barriers to accessing services. This study aimed to evaluate the feasibility and acceptability of implementing the World Health Organization-Caregivers Skills Training program (WHO-CST) via an online, synchronous group format in rural Missouri. Methods: We used a mixed methods design to collect qualitative and quantitative data from caregivers and program facilitators at baseline and the end of the program, following the last home visit. Caregivers of 14 autistic children (3-7 years), residents of rural Missouri, completed nine virtual sessions and four virtual home visits. Results: Four main themes emerged from the focus groups: changes resulting from the WHO-CST, beneficial aspects of the program, advantages and disadvantages of the online format, and challenges to implementing the WHO-CST via telehealth. The most liked activity was the demonstration (36%), and the least liked was the practice with other caregivers. From baseline to week 12, communication skills improved in both frequency (p < 0.05) and impact (p < 0.01), while atypical behaviors decreased (p < 0.01). For caregivers' outcomes, only confidence in skills (p < 0.05) and parental sense of competence (p < 0.05) showed a positive change. Conclusion: Our results support the feasibility of implementing the WHO-CST program via telehealth in a US rural setting. Caregivers found strategies easy to follow, incorporated the program into their family routines, and valued the group meetings that allowed them to connect with other families. A PMI such as the WHO-CST, with cultural and linguistic adaptations and greater accessibility via telehealth-plays an essential role in closing the treatment gap and empowering caregivers of autistic children.

Brief report: Validity and reliability of the Nigerian Autism Screening Questionnaire.

LAY ABSTRACT: Early intervention for individuals with autism spectrum disorder (ASD) is dependent on reliable methods for early detection. Screening for ASD symptoms is an important strategy in low- and middle-income countries that often lack adequate service infrastructure. This study aims to conduct preliminary evaluation of the psychometric properties of a tool developed and deployed in Nigeria called the Nigerian Autism Screening Questionnaire (NASQ). Results demonstrated that NASQ, when used as a community-based survey, has a clear factor structure with consistent measurement across age and sex, and that scores from below average to well above average are measured reliably. Future research is needed to examine the performance of this tool against confirmatory ASD diagnosis in screening and diagnostic contexts to further understand the utility and applicability of this tool in the resource-limited Nigerian setting.

Health Disparities among Children with Autism Spectrum Disorders: Analysis of the National Survey of Children's Health 2016.

Utilizing the 2016 National Survey of Children's Health, this study illustrates that children with ASD have nearly 4 times higher odds of unmet health care needs compared to children without disabilities, whereas children with other disabilities had nearly 2 times higher odds of unmet health care needs compared to children without disabilities. Applying Andersen's Behavioral Model of health care utilization, this study estimates that enabling factors (e.g., access to health insurance, quality of health insurance, access to family-centered care, family-level stress, exposure to adverse childhood experiences, and parental employment) improved prediction of regression model for unmet health care needs by 150%. Policy and program implications are discussed and a new framework for responding to observed disparities is discussed.

Phase 1/2 Trial of Carfilzomib Plus High-Dose Melphalan Preparative Regimen for Salvage Autologous Hematopoietic Cell Transplantation Followed by Maintenance Carfilzomib in Patients with Relapsed/Refractory Multiple Myeloma.

We performed a phase 1/2 trial to investigate the safety and activity of the second-generation proteasome inhibitor Carfilzomib (K) on days -3/-2 in combination with melphalan 200 mg/m2 (MEL200) on day -2 (K-MEL) in patients with relapsed multiple myeloma (MM) undergoing autologous hematopoietic cell transplantation (phases 1 and 2). Patients without progression received 12 cycles of K maintenance at 36 mg/m2 days 1, 8, and 15 (schedule A) or days 1, 2, 15, and 16 (schedule B), with patients being treated for 2 cycles in each schedule and on the patient-preferred schedule for the remaining cycles (phase 2). The patients had received a median of 3 previous lines of therapy, 56% had undergone previous AHCT, and 51% had received previous K therapy. During phase 1 (n = 15), the maximum tolerated dose of K in combination with MEL200 was not reached, so the maximum tested dose of 27 mg/m2 (on day -3) and 56 mg/m2 (on day -2) was used in phase 2. The rate of very good partial response after K-MEL therapy (n = 44) was 59.2%, compared with 13.7% before K-MEL therapy. Among patients starting maintenance therapy (n = 27), 12-month progression-free survival was 66.7% and 12-month overall survival was 88.1%. There was no strong patient preference for either schedule. Two patients discontinued maintenance due to toxicity. K-MEL followed by K maintenance is safe and active salvage therapy in patients with MM.

Phase I/IIa study of sequential chemotherapy regimen of bendamustine/irinotecan followed by etoposide/carboplatin in untreated patients with extensive disease small cell lung cancer (EDSCLC).

PURPOSE: The sequence bendamustine (B) + Irinotecan (I) followed by etoposide (E) + carboplatin (C) was hypothesized to increase progression-free survival (PFS) and overall survival (OS) in untreated extensive-disease small cell lung cancer (EDSCLC) patients compared to historical controls by exploiting mitotic catastrophe. Absent expression of ERCC-1 and expression of topoisomerases were hypothesized to be predictive for PFS and OS. METHODS: This was a phase I/IIa trial in 30 patients to determine the maximum tolerated dose (MTD) of B + I and the PFS of B + I E + C with secondary end points including overall response rate (ORR) and OS. Biomarkers measured by immunohistochemistry (IHC) obtained from diagnostic specimens were correlated with outcome. RESULTS: The MTD of B + I was not reached. During treatment with B + I, there were two grade 5 toxicities from neutropenic sepsis and metabolic encephalopathy. Other toxicities included fatigue, nausea/vomiting, diarrhea, and weight loss. For the sequence, the PFS and OS were 6.0 months and 10 months, respectively. The ORR for B + I and the sequence were 82% and 83%, respectively. Topoisomerase-2 expression was predictive for TTP and OS, but absent ERCC-1 expression was not, contrary to our hypothesis. CONCLUSIONS: B + I is an active regimen in EDSCLC. Toxicities included two grade 5 events but were otherwise manageable. The novel sequence B + I E + C increased PFS and OS compared to historical controls. Correlative studies are conflicting regarding the mechanism of action of this novel sequence.

Occupational Therapy Workforce in the United States: Forecasting Nationwide Shortages.

BACKGROUND: As the baby boomer generation retires in growing numbers, the demand for occupational therapists specializing in geriatrics will be particularly strong. Currently, there is evidence that a workforce shortage exists in the field of occupational therapy (OT), and few studies have been published in this area to systematically examine the status of the OT workforce. OBJECTIVE: To examine current and future OT job surplus/shortage trends within the United States. DESIGN: Forecast models and grading methodology were developed to evaluate individual state OT job shortages from 2008 to 2030. SETTING: Not applicable. PARTICIPANTS: Not applicable. MAIN OUTCOME MEASUREMENTS: OT shortages, OT shortage ratios, and a report card were generated and compared among the 50 states in the United States. RESULTS: On the basis of current trends, demand for OT services will outpace the supply of occupational therapists within the United States. Shortages are expected to increase for all 50 states through 2030. The number of states with a grade D or below will increase from 3 in 2010, to 18 in 2020, to 37 in 2030, respectively. By 2030, the 3 states with the greatest shortage ratios will be Arizona, Hawaii, and Utah. The 3 states with the largest OT shortages (the number of OT jobs) will be California, Florida, and Texas. States in the northeast are projected to have the smallest shortages whereas states in the south and west are projected to have the largest shortages. CONCLUSION: This study serves to provide health care professionals, policy makers, and stakeholders with a means of assessing current and future OT needs. Discussion of the issues surrounding OT shortages and ongoing assessment of supply and demand must ensue to mitigate the projected shortages.

Brief report: pervasive developmental disorder can evolve into ADHD: case illustrations.

Despite prominent attentional symptoms in Pervasive Developmental Disorders (PDD) the relationship between PDD and Attention Deficit Hyperactivity Disorder (ADHD) has received little direct examination. In addition, outcome studies of children with PDD often focus on language, educational placement, or adaptive skills, but seldom on loss of the PDD diagnosis or change to another clinical syndrome. We present three cases in detail, and tabular data on eight more, that illustrate a clinical presentation in which prototypical cases of PDD evolve into clear-cut cases of ADHD from early to middle childhood.

Cognitive complaints are associated with depression, fatigue, female sex, and pain catastrophizing in patients with chronic pain.

OBJECTIVE: To examine the relation between demographic, pain-related, psychosocial, affective, and treatment factors and complaints of cognitive dysfunction among patients with chronic pain. DESIGN: Cross-sectional survey. SETTING: A university hospital outpatient multidisciplinary chronic pain program. PARTICIPANTS: Chronic pain patients (N=222; 135 women, 87 men) completed a battery of psychometric questionnaires as part of an initial evaluation on referral to the program. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Cognitive impairment was assessed with items from the Brief Symptom Inventory; measures of depressive symptoms, pain intensity, posttraumatic stress disorder (PTSD), and pain catastrophizing were obtained from the Beck Depression Inventory (negative affect, negative self, somatic/physical function), McGill Pain Questionnaire, Modified Posttraumatic Chronic Pain Test, and Coping Strategies Questionnaire, respectively; and measures of subjective sleep disturbance, fatigue, opiate use, compensation/litigation status, pain location, and relevant demographic data were obtained from an open-ended questionnaire. RESULTS: Correlational analysis indicated that female sex, pain intensity, PTSD symptoms, depressive symptoms, catastrophizing, pain location (neck), and fatigue were all positively related to cognitive complaints. Simultaneous regression analysis showed that all factors combined accounted for 52% of the variance in self-report of cognitive difficulties and that 6 variables had a significant unique contribution to the report of cognitive complaints in the following order of importance: depression-negative affect (beta=.28, P <.05), fatigue (beta=.17, P <.05), depression-somatic/physical function (beta=.16, P <.05), depression-negative self (beta=.14, P =.05), pain catastrophizing (beta=.12, P =.08), and female sex (beta=.12, P <.05). CONCLUSIONS: Complaints of cognitive impairment among chronic pain patients appear to be associated with multiple factors, with particular attention to depressive symptoms, fatigue, and catastrophizing. Our results also suggest that women with chronic pain are particularly vulnerable to cognitive dysfunction.

Long-term outcome of children with high tetraplegia and ventilator dependence.

BACKGROUND/OBJECTIVES: Since 1978, 350 children with ventilator dependence, including 49 with spinal cord injuries (SCIs), have been followed at the University of Michigan C.S. Mott Children's Hospital. Some data were kept on these children prospectively and included in various studies relating to their outcomes and quality of life. This study was designed to determine physical outcomes of children with SCI and long-term mechanical ventilation (LTMV) and to determine predictors of quality of life for children with SCI and LTMV. METHODS: Prospective data collection and retrospective chart reviews were conducted for all 49 children with SCI and LTMV followed at the University of Michigan C.S. Mott Children's Hospital from 1978 to 2003. RESULTS: Of the 49 children with SCI and LTMV, 25 are alive, 16 have died following initial hospital discharge, and 8 have been lost to follow-up. Age at injury was under 5 years for 15, 5 to 9 years for 12, 10 to 14 years for 9, and over 14 years for 13. Forty had high tetraplegia, 7 had low tetraplegia, and 2 had paraplegia. Forty-two had ASIA A injuries, and 7 had ASIA D. All were discharged to their own homes or foster care. CONCLUSION: Our research studies of children with ventilator dependence with and without history of SCI have examined daily activities, perceptions of their quality of life, and their health and medical complications. This study compares individuals 16 years of age and older with matched control groups of those with tetraplegic SCI who do not use ventilators and those with other diagnoses who use home ventilation. Overall, these children have done remarkably well medically and psychologically.

The PedsQL Family Impact Module: preliminary reliability and validity.

BACKGROUND: The PedsQL Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL 4.0 Generic Core Scales were developed to be integrated with the PedsQL Disease-Specific Modules. The newly developed PedsQL Family Impact Module was designed to measure the impact of pediatric chronic health conditions on parents and the family. The PedsQL Family Impact Module measures parent self-reported physical, emotional, social, and cognitive functioning, communication, and worry. The Module also measures parent-reported family daily activities and family relationships. METHODS: The 36-item PedsQL Family Impact Module was administered to 23 families of medically fragile children with complex chronic health conditions who either resided in a long-term care convalescent hospital or resided at home with their families. RESULTS: Internal consistency reliability was demonstrated for the PedsQL Family Impact Module Total Scale Score (alpha = 0.97), Parent HRQOL Summary Score (alpha = 0.96), Family Functioning Summary Score (alpha = 0.90), and Module Scales (average alpha = 0.90, range = 0.82 - 0.97). The PedsQL Family Impact Module distinguished between families with children in a long-term care facility and families whose children resided at home. CONCLUSIONS: The results demonstrate the preliminary reliability and validity of the PedsQL Family Impact Module in families with children with complex chronic health conditions. The PedsQL Family Impact Module will be further field tested to determine the measurement properties of this new instrument with other pediatric chronic health conditions.

Evaluation of the built environment at a children's convalescent hospital: development of the Pediatric Quality of Life Inventory parent and staff satisfaction measures for pediatric health care facilities.

In preparation for the design, construction, and postoccupancy evaluation of a new Children's Convalescent Hospital, focus groups were conducted and measurement instruments were developed to quantify and characterize parent and staff satisfaction with the built environment of the existing pediatric health care facility, a 30-year-old, 59-bed, long-term, skilled nursing facility dedicated to the care of medically fragile children with complex chronic conditions. The measurement instruments were designed in close collaboration with parents, staff, and senior management involved with the existing and planned facility. The objectives of the study were to develop pediatric measurement instruments that measured the following: (1) parent and staff satisfaction with the built environment of the existing pediatric health care facility, (2) parent satisfaction with the health care services provided to their child, and (3) staff satisfaction with their coworker relationships. The newly developed Pediatric Quality of Life Inventory scales demonstrated internal consistency reliability (average alpha = 0.92 parent report, 0.93 staff report) and initial construct validity. As anticipated, parents and staff were not satisfied with the existing facility, providing detailed qualitative and quantitative data input to the design of the planned facility and a baseline for postoccupancy evaluation of the new facility. Consistent with the a priori hypotheses, higher parent satisfaction with the built environment structure and aesthetics was associated with higher parent satisfaction with health care services (r =.54, p <.01; r =.59, p <.01, respectively). Higher staff satisfaction with the built environment structure and aesthetics was associated with higher coworker relationship satisfaction (r =.53; p <.001; r =.51; p <.01, respectively). The implications of the findings for the architectural design and evaluation of pediatric health care facilities are discussed.