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To characterize how survivors of cancer define participation.Cross-sectional qualitative study.Participants were enrolled from a large academic medical center in the Midwestern United States. Interviews were conducted over Zoom or phone.Survivors of cancer (N=40) with brain, breast, colorectal, or lung cancer (n=10 per group). Participants were purposively sampled to maximize variation in the study sample. Participant ages ranged from 26-83 years, with a mean age of 55 years. Seventy percent of participants were receiving active cancer treatment at the time of the interview.Not applicable.Participant perspectives gathered from 1-on-1 semistructured interviews. Qualitative description and thematic analysis were used to analyze interview transcripts and develop themes from the data.Survivors described participation as doing valued activities and highlighted 4 common aspects: (1) control; (2) social connection; (3) engaging in various contexts; and (4) cultivation of joy and purpose. Fully participating in life involved being able to do what they want to do without restrictions or limitations. Survivors' perspectives of control outlined how competence, choice, adaptations, and locus of control influence broader feelings of control and participation. Interviews highlighted that participation remains central to daily life among survivors of cancer.Rehabilitation researchers and clinicians need to establish a standard and comprehensive definition of participation. Rehabilitation providers need to consistently evaluate how participation is affected among survivors of cancer and use measures that include core aspects of participation identified in this study and previous research. Comprehensively defining participation will improve the design and selection of measurement tools and support comprehensive assessment of survivor experiences.

People with cervical spinal cord injury (SCI) identify improving upper extremity (UE) function as a top priority. In addition to comprehensive rehabilitation, UE surgeries, including nerve and tendon transfers, enhance function. However, barriers exist to disseminating information about surgical options to enhance UE function.To assess the experiences and preferences of people with cervical SCI and their caregivers in accessing information about surgery to enhance UE function.Prospective cohort study. Participants were followed up for 24 months and completed up to three interviews.Tertiary care at academic and affiliated Veterans Administration Health Care Centers.Adults with cervical SCI (n = 35) ages 18 to 80 years with mid-cervical SCI American Spinal Injury Association Impairment Scale A, B, or C (at least 6 months post-injury) and their caregivers (n = 23) were eligible to participate. Participants were enrolled in three groups: nerve transfer, tendon transfer, or no UE reconstructive surgery.Not applicable.Semi-structured interviews about surgical knowledge and experiences.Data were analyzed and three themes were identified. First, providing information about UE surgical options early post-injury was recommended. The acute or inpatient rehabilitation phases of recovery were the preferred times to receive surgical information. Second, challenges with information dissemination were identified. Participants learned about UE surgery through independent research, medical provider interactions, or peers. Third, peers were identified as valuable resources for SCI needs and surgical information.Following cervical SCI, information about UE reconstructive surgeries should be a standard component of education during rehabilitation. An increased understanding of the reconstructive options available to improve UE function is necessary to educate stakeholders. Future research is needed to support the development of strategies to effectively present surgical information to individuals with SCI and health care providers.

AIM To summarize developmental delay among infants and toddlers with sickle cell disease (SCD). METHOD This systematic review included studies that reported developmental outcomes of children with SCD between 0 months and 48 months of age and followed standards set forth by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. RESULTS Ten studies were included, describing 596 unique developmental assessments. The rate of developmental delay ranged from 17.5% to 50% and increased with age. Cognition was the only domain included in all studies and the most frequently identified delay. One study reported that more severe SCD genotypes predicted worse development, while five studies reported no difference in rates of developmental delay across genotypes. INTERPRETATION These findings emphasize the need for standardized screening to identify children with SCD at risk of delay at a young age to facilitate appropriate referrals for therapeutic intervention. Frequent and comprehensive developmental screening is necessary among all SCD genotypes.

To understand how COVID-19 has affected the daily lives of people living with cervical spinal cord injury (SCI).Cross sectional qualitative study.Academic medical center in the Midwestern United States.Ten community-dwelling individuals (8 men, 2 women), average 11.6 years post-mid-cervical level SCI (N=10).Not applicable.Semistructured interviews were completed by phone. The research team used thematic analysis and inductive strategies to analyze the data in this exploratory investigation.People with cervical SCI living in the United States during the spring of 2020 experienced changes to their daily lives. Participants described how interactions with caregivers for activities of daily living were complicated by fear about contracting and/or transmitting COVID-19. The pandemic limited this population's access to medical care and adversely affected their mental and physical health. Telemedicine was seen as a helpful alternative to in-person visits. Some participants felt that their previous life-altering experience (SCI) better prepared them to cope with the pandemic and "roll with things."Learning about how people with SCI cope, persevere, and survive to overcome adversity during the pandemic should inform future research to support those with SCI. Improving telemedicine and rewarding and recognizing caregivers for their role in maintaining health are important first steps. We must continue to be creative about improving our health care systems and access for people with disabilities, particularly during this and future public health crises.

Objective To identify the proportion of hospitals/clinics in the United States (US) that have a comprehensive pediatric oncology rehabilitation program and characterize current practices. Design Cross-sectional survey of rehabilitation providers in the US and internationally. Setting Electronic or telephone survey. Participants Rehabilitation or supportive care practitioners employed at a hospital, outpatient clinic, or medical university (N=231). Interventions Electronic and telephone survey. The full electronic survey contained 39 questions, provided opportunities for open-ended responses, and covered 3 main categories specific to pediatric cancer rehabilitation: service delivery, rehabilitation program practices, and education/training. The short telephone survey included 4 questions from the full survey and was designed to answer the primary study objective. Main Outcome Measures Proportion of hospitals/clinics with a comprehensive pediatric oncology rehabilitation program. Results This cohort includes rehabilitation providers from 191 hospitals/clinics, 49 states within the US, and 5 countries outside of the US. Of hospitals/clinics represented from the full and short survey, 145 (76%) do not have an established pediatric oncology rehabilitation program. Nearly half of full survey respondents reported no knowledge of the prospective surveillance model, and 65% reported no education was provided to them regarding pediatric cancer rehabilitation. Qualitative survey responses fell into 3 major themes: variability in approach to rehabilitation service delivery, program gaps, and need for additional educational opportunities. Conclusions There is evidence of limited comprehensive rehabilitation programming for children with cancer as demonstrated by the lack of programs with coordinated interdisciplinary care, variability in long-term follow-up, and absence of education and training. Research is needed to support the development and implementation of comprehensive pediatric oncology rehabilitation programs.

BackgroundDevelopment is rapid in the first years of life. Developmental delays appearing during this critical period have the potential to persist throughout the child’s life. Available standardized assessments for this age record a child’s ability to successfully complete discrete skills but fail to capture whether the child incorporates those skills into daily routines that are meaningful to the child and family. The Infant Toddler Activity Card Sort (ITACS) is a newly developed photograph-based early intervention tool to measure the participation-related concept of activity competence using caregiver report. The purpose of the present study was to use Rasch analysis to determine if ITACS items comprehensively measure the construct of child activity competence.ResultsA total of 60 child/caregiver dyads participated. The dichotomous caregiver-reported responses (present vs. absent) on the 40 individual ITACS items were used in Rasch analysis, and three iterations of the model were completed. The final model included 51 child/caregiver dyads and 67 ITACS assessments with a good spread of individual ability measure (6.47 logits). All items demonstrated adequate infit except for “sleeping” (range 0.68–1.54). Five items (sleeping, eating at restaurants, brushing teeth, crawling, and interact with pets) demonstrated high Mean Square (MNSQ) outfit statistics and one (take a bath) demonstrated low MNSQ outfit. ITACS items demonstrated a good spread of item difficulty measures (6.27 logits), and a clear ceiling was observed. Three activity items (smiling, breastfeeding, and playing with adults) were rarely endorsed as concerns. The activities most likely to be reported as challenging were “crying/communicating” and “going to school”. Person and item reliability statistics were adequate (0.79 and 0.80, respectively). The separation between individuals and between items were adequate to good (1.96 and 1.99, respectively).ConclusionsFindings indicate that ITACS items are measuring a unidimensional construct--activity competence in early childhood. The Rasch analysis of caregiver responses suggest that some activities are more likely to be considered challenging and may be important targets for intervention. These results provide evidence to further validate the ITACS as a caregiver report measure and support its use in the early intervention setting to facilitate caregiver driven goal development.

Radiation necrosis is a potentially debilitating side effect of therapy necessary to treat pediatric central nervous system tumors. Clinical signs of cerebral radiation necrosis (CRN) are similar to symptoms of disease progression and require close monitoring. The case of an infant diagnosed with a malignant rhabdoid tumor is presented to describe the medical and rehabilitation interventions implemented to address CRN. Rehabilitation providers should routinely be consulted in children with CRN as they fill a critical role in treatment, neurological symptom monitoring, and intervention planning to address family-centered functional goals.

Individuals with cancer are at high risk for restricted participation in meaningful life activities such as work, school, and social activities. Evaluating participation in life activities is identified as a critical component of rehabilitation referral and triage systems. This scoping review investigates what assessments are used to measure participation in life activities in individuals with cancer. Six databases were systematically searched using keywords and controlled vocabulary through February 2020. Eligible studies used the term participation in the context of life situations and had an assessment with at least 5 participation-specific questions. A total of 4604 unique articles were identified and screened for eligibility. Thirty-two studies were included; 20 unique assessments of participation were identified. Assessments were developed with the primary purpose of measuring participation (n = 8); global or physical function (n = 9); community integration (n = 1); social activity (n = 1); or occupational gaps (n = 1). Most assessments (12/20) were not developed with the purpose of measuring participation and only 4 assessments measured key components of participation other than frequency. Measuring participation in life activities is a developing area in oncology research. Most studies do not accurately or comprehensively measure this construct. The heterogeneity in assessments used indicates no clear consensus on a gold-standard participation measure for use among cancer survivors. Comprehensively measuring participation will help identify individuals in need of rehabilitation services and is an essential first step to inform the development of targeted interventions to enhance participation.

Date Presented 04/9/21 Development in the first years of life is often characterized by a child’s aptitude to complete discrete tasks, such as walking or stacking blocks. True participation requires the child to incorporate skills into everyday activities. This presentation will provide an overview of the Infant Toddler Activity Card Sort, the initial psychometrics, and a Rasch analysis. Primary Author and Speaker: Catherine R. Hoyt Contributing Authors: Ching-Fan Sheu

Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Rehabilitation practitioners (N = 98) indicate it is very important to have specialized therapists and programs for pediatric cancer rehabilitation, yet only 39% of hospitals have a specialized program. Therapists rarely receive education during academic or clinical training on working with children with cancer, resulting in a lack of consistency in services provided across institutions. A pediatric cancer rehabilitation certification program can help promote an evidence-based standard of care. Primary Author and Speaker: Molly Houdeshell Additional Authors and Speakers: Natalie Haffner Contributing Authors: Taniya Easow Varughese, Allison King, and Allison J L'Hotta

Comprehensive cancer rehabilitation programs are essential to enhance patient outcomes. Services vary by institution, and few oncology programs have comprehensive cancer rehabilitation programs. Current rehabilitation program recommendations focus on the needs of adults; the unique needs of children and adolescents with cancer also require attention. Pediatric oncology rehabilitation is an emerging area of practice, and more pediatric institutions are exploring how to develop consistent and streamlined services. To assist practitioners in program development and to raise awareness of the rehabilitation needs of this population throughout the continuum of care, we describe the development of a multidisciplinary pediatric cancer rehabilitation program.

Background Children with sickle cell disease (SCD) are at risk for fine motor (FM) delays; however, screening for FM impairments is not common among young children with SCD. The Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III) is the most commonly used performance-based developmental assessment. We aim to determine if the FM subtest of the Bayley-III is structured hierarchically in accordance with development and comprehensively evaluates FM development in children with SCD. Methods Bayley-III assessments were completed between October 2009 and December 2013. The Bayley-III FM screening test, a shorter and more rapid method of assessing for FM impairments, was not directly administered to participants. Screening test scores were calculated from full Bayley-III scores. Results Rasch analysis was performed using WINSTEPS. Sixty children with SCD were included in the final Rasch model. The Rasch-generated Wright map, which jointly positions items and persons on the same latent trait, illustrated that the FM items were slightly skewed towards more challenging items, indicating more difficult items may be overrepresented. High item separation values were reported (17.4), and item outfit statistics were less than 1.7. More than one third of items demonstrated overfit, indicating possible item redundancy. The FM subtest and the screening test, a shorter and faster method of assessing skills, were highly correlated (r = 0.993, p Conclusion The Bayley-III FM subtest is structured hierarchically, aligning with motor development, and comprehensively evaluates FM development in children with SCD. The test could be improved by reordering items, removing overfitting items and modifying screening test items to capture all ranges of development. The screening test is comprehensive and has high potential clinical utility among children with SCD.

Objective Caregivers of young children with chronic illnesses are at high risk for elevated levels of stress and mental health symptoms. This study examined stress and mental health symptoms as well as the socioeconomic status (SES) and home environments of a cohort of caregivers of infants and toddlers with sickle cell disease (SCD). Methods Forty-two caregivers of infants and toddlers (aged 1–34 months) with SCD completed the Brief Symptom Inventory (BSI) and Parent Stress Index (PSI). The Home Observation for Measurement of the Environment (HOME) was used to assess family living environments. Results Compared to test norms, caregivers reported high levels of situational/demographic life stress [mean difference (MD) 5.7, p = .003] and child distractibility/hyperactivity (MD 3.62, p = .001) on the PSI. However, no significant differences in psychological symptoms of distress were noted on the BSI. Caregivers scored significantly lower than norms on PSI subdomains of acceptability (MD −1.88, p = .03), competence (MD −3.11, p = .002), depression (MD −3.94, p < .001), and the overall parent domain (MD −12.55, p = .005). Significant correlations were found between PSI scores and the HOME and between SES and the HOME. Conclusion Caregivers of infants and toddlers with SCD experience elevated levels of life stress but, in turn, endorse high acceptance of their child and self-competence in parenting. Although life stress may be high in this population, symptoms of psychological distress were not identified. Caregivers reporting elevated life and illness-specific stressors may benefit from environmental supports and interventions.

Background There is a critical need to facilitate return to work, school, and life activities among individuals with and surviving cancer. Each of these areas is a component of participation, defined by the International Classification of Functioning, Disability, and Health (ICF) as involvement in a life situation. Before developing interventions to address participation, we must first understand how this concept is measured. This scoping review investigates what assessments are currently used to measure participation in life activities in individuals with cancer. Methods Six databases were systematically searched using keywords and controlled vocabulary through February 2019. Eligible studies used the term participation in the context of life situations and had an assessment with at least 5 participation-specific questions. Results More than 4,000 references were identified and screened for eligibility. Twenty-seven studies were included; 18 unique assessments of participation were identified. Assessments were 1) developed with the primary purpose of measuring participation (n= 8); 2) measured global or physical function (n=8; 4 had a domain specific to participation); or 3) measured community integration (n=1) or social activity (n=1). Most assessments (10/18) were not developed with the purpose of measuring participation and only 4 assessments measured key components of participation (e.g. satisfaction) other than frequency. Discussion Measuring participation in life activities is a developing area in oncology research. Most studies do not accurately or comprehensively measure this construct. The heterogeneity in the assessments used indicates no clear consensus on a gold-standard participation measure for use among individuals with cancer. Comprehensively measuring participation is an essential first step to helping individuals with and surviving cancer lead productive and meaningful lives during and after treatment. By identifying deficits in participation, healthcare providers can better understand what activities are most important to their patients and provide necessary interventions. To facilitate the development of targeted interventions, a comprehensive measure of participation needs to be validated for use with individuals with cancer.

Background: Sickle cell disease (SCD) is a genetic hematologic condition affecting more than 300,000 individuals worldwide. Most of the 100,000 individuals with SCD in the United States are African-American. An estimated 50% of those with the most severe genotype of SCD (HbSS) will have an overt or silent cerebral infarct (SCI) by age 30. While a significant number of studies have addressed the cognitive function and brain imaging of children with SCD, very few have included adults. As disease modification has increased over the last decade, a modern assessment of adults with SCD is needed. The aims of this study are to: 1. Determine the prevalence of cognitive impairment in adults with SCD 2. Determine if adults with SCD have deficits in functional task performance skills 3. Assess if and how cognitive function and task performance change over time Methods: This is a cross-sectional analysis of a prospective, observational cohort study. Adults, 18 years of age or older, with any form of SCD were recruited from the SCD clinics at Washington University in St. Louis. During baseline testing, participants completed the Wechsler Abbreviated Scale of Intelligence (WASI-II), National Institutes of Health Toolbox Cognition Battery (NIHTB-CB), and the Medication subtest of the Executive Function Performance Test (EFPT-M). The WASI-II and NIHTB-CB were repeated annually. Mean participant data from the baseline WASI-II and NIHTB-CB were compared with normative individual measure and composite scores using a one-sample t-test. The NIHTB-CB normative mean is a t-score of 50 with a SD of 10. Baseline results on Medication subtest of the EFPT were compared to previously tested control and stroke groups. Higher scores on the EFPT are indicative of greater executive dysfunction. Differences between Time 1 and Time 2 scores were evaluated using a paired-samples t-test. Univariate analyses were used to describe relationships between cognition and patient factors. Annual magnetic resonance imaging (MRI) was also conducted to assess infarct classification, with completion limited to 12-18 months from consent. Radiographical analyses were reviewed and recorded by the study neuroradiologists. Results: Forty participants were assessed at baseline; 9 completed Time 2 testing. Participant demographic information is presented in Table 1. Compared to the normative population, no significant differences were found on the WASI-II. On the NIHTB-CB, participants scored significantly lower on subtests measuring processing speed (Mean difference -13.8, p Of the 59 participants consented to yearly MRI evaluation, 45 have completed baseline imaging and 1 completed Time 2 imaging. Radiographical impressions reported: 1) overt strokes in 2 participants on transfusions (TF), 1 on hydroxyurea (HU), and 1 on no disease-modifying regimen (ND); 2) SCIs in 6 participants on TF, 6 on HU, and 4 on ND; 3) no infarct in 1 participant on TF, 18 on HU, and 9 on ND. Conclusion: Adults with SCD in this relatively highly educated cohort have marked deficits in executive function, attention, working memory, processing speed, and self-awareness. Cognitive deficits lead to difficulty completing everyday functional and disease-related activities, ranging from medication adherence to productivity in education and employment. Healthcare providers who treat individuals with SCD should be aware of the cognitive impairments in this population. Routine cognitive screening is needed to initiate referrals for cognitive rehabilitation. Disclosures King: Magenta Therapeutics: Membership on an entity's Board of Directors or advisory committees; Novimmune: Research Funding; RiverVest: Consultancy; Tioma Therapeutics (formerly Vasculox, Inc.):: Consultancy; WUGEN: Equity Ownership; Incyte: Consultancy; Amphivena Therapeutics: Research Funding; Cell Works: Consultancy; Bioline: Consultancy; Celgene: Consultancy.