"If I have a limited amount of time left, this is not how I want to spend it": A qualitative descriptive study of factors influencing daily life participation following a cancer diagnosis.

OBJECTIVE: Following a cancer diagnosis, restricted participation in daily life is common. Restricted participation can be temporary or long lasting. The aim of this study was to characterize how daily life participation is impacted following a cancer diagnosis. METHODS: Eligible individuals included adults (>18 years) with any stage/grade brain, breast, colorectal, or lung cancer in any phase of treatment or post-treatment. Participants completed a semi-structured interview about how their life participation was impacted following their cancer diagnosis. Data were analyzed through team-based thematic analysis. RESULTS: Forty adults, 10 per disease category, participated. Four themes were identified that supported or hindered daily life participation: (1) self-expectations, (2) expectations of others, (3) awareness of mortality, and (4) symptoms and side effects of cancer. Participants discussed how their cancer experience resulted in a reprioritization of what they valued doing in their life. However, many survivors struggled to adapt and described a tension between their need to adapt to their current life circumstances and their contrasting desire to stay connected with their pre-cancer selves through daily life participation. The mental health challenges associated with decreased participation were also outlined by participants. CONCLUSIONS: Cancer survivors' daily life participation is influenced by expectations from themselves and others, awareness of mortality, and disease symptoms/side effects. Future interventions can target these domains to supports survivors' life participation.

Children with non-central nervous system tumors treated with platinum-based chemotherapy are at risk for hearing loss and cognitive impairments.

Background: Childhood cancer survivors (CCS) with chemotherapy induced sensorineural hearing loss (SNHL) are at risk for neurocognitive impairments. The purpose of this study was to determine the relationship between SNHL and cognitive function among CCS. Procedure: Inclusion: non-CNS solid tumor diagnosis; history of platinum chemotherapy (cisplatin and/or carboplatin); 8-17 years of age; off anti-cancer treatment for ≥6 months; and English speaking. Exclusion: history of intrathecal chemotherapy, cranial radiation, or baseline neurocognitive disorder. Participants completed the NIH Toolbox Cognition Battery at enrollment. T-tests were used to compare participants with normal hearing to those with hearing loss and the total sample with established Toolbox normative data (mean: 50; SD: 10). Results: Fifty-seven individuals enrolled; 52 completed full cognitive testing. Participants were on average 12.2 years of age and 7.0 years since treatment completion. Twenty-one participants (40%) received cisplatin, 27 (52%) carboplatin, and 4 (8%) received both. Fifteen participants (29%) demonstrated SNHL based on the better ear. CCS, regardless of the presence or absence of SNHL, demonstrated significantly lower mean cognitive skills compared to the normative sample in attention, executive function, language- vocabulary and oral reading, processing speed, and fluid, crystallized and total composite scores (all p < 0.01). Participants with SNHL had significantly lower crystallized composite (vocabulary, oral reading) than those with normal hearing (41.9 vs. 47.2, p < 0.05, Cohen's d = 0.62). Conclusions: CCS at risk for platinum induced hearing loss but without cranial radiation or intrathecal chemotherapy exposure demonstrate impaired cognitive skills and those with SNHL demonstrate lower crystallized composite scores.

Assessing quality of life in childhood cancer survivors at risk for hearing loss: a comparison of HEAR-QL and PROMIS measures.

Background: Childhood cancer survivors (CCS) exposed to platinum chemotherapy are at an increased risk of developing hearing loss and reporting decreased quality of life (QOL). This study compared two QOL measures; one developed for children with hearing loss, The Hearing Environments and Refection on Quality of Life (HEAR-QL), and one validated in CCS, the Patient-Reported Outcomes Measurement Information System (PROMIS), to assess their ability to evaluate QOL deficits in this population. Methods: Subject eligibility were restricted to CCS exposed to platinum-based chemotherapy but who were free of known risk factors for cognitive impairment, (non-central nervous system tumor, no cranial radiation, or intrathecal chemotherapy). Participants had to be between 8-17 years, have completed anti-cancer therapy for at least 6 months, and have an audiogram within 1 year, Participants completed the HEAR-QL-26 (7-12 years) or the HEAR-QL-28 (13-18 years) and the PROMIS. Independent samples and/or one sample T-tests were utilized to compare participants with normal hearing and hearing loss, and to compare outcome measures to normative HEAR-QL and PROMIS data. Non-parametric correlations were utilized to evaluate the relationship between QOL and demographic and medical variables, and QOL and severity of hearing loss. Results: Fifty-four CCS were evaluable. The mean age was 12.0 years. Twenty-eight participants (51.9%) received cisplatin, 30 (55.6%) carboplatin, and 4 (7.4%) received both. Twenty participants (37%) demonstrated hearing loss. Participants with hearing loss scored significantly lower on the HEAR-QL than those with normal hearing (mean: 70.3, SD: 21.7, vs mean: 88.0, SD: 9.3, p =.004 for the HEAR-QL-26; mean: 84.7, SD: 10.2 vs mean: 94.8, SD: 3.4, p =.040 for the HEAR-QL-28). Participants with normal hearing scored significantly lower on the HEAR-QL-26 than the normative mean (mean: 88, SD: 9.3, normative mean: 98, SD: 5, p =.000). The PROMIS failed to identify any differences in QOL between participants based on hearing status, or when compared to the normative mean. Conclusion: The HEAR-QL was more sensitive than the PROMIS in identifying QOL deficits in CCS at risk for hearing loss. The HEAR-QL should be considered in studies seeking to improve the QOL of CCS with hearing loss.

Upper Extremity Surgery in Cervical Spinal Cord Injury: A Prospective Comparative Mixed Methods Study.

BACKGROUND: Cervical spinal cord injury (SCI) is a devastating injury. Restoring upper extremity function is a top priority, which can be accomplished by tendon transfer (TT) and nerve transfer (NT) surgeries. The purpose of this prospective comparative study was to assess long-term changes in UE function between surgical (TT or NT) and non-surgical groups through a comprehensive mixed methods approach. METHODS: This multicenter, cohort study compared data among three groups: those undergoing 1) no surgery 2) TT surgery, or 3) NT surgery. Quantitative data, the Spinal Cord Independence Measure (SCIM) and Short Form Health Survey (SF-36), was collected at baseline and long-term follow-up (6-24 months). Qualitative semi-structured interview data was also obtained from these participants and their identified caregivers at baseline, early follow-up (1 month), and long-term follow-up (6-24 months). RESULTS: Thirty-one participants had quantitative data across all timepoints: no surgery (n=14), TT (n=7), and NT (n=10). SCIM scores improved in TT and NT groups compared to the no surgery group (p<0.05). SF-36 scores did not differ among groups. Qualitative data analysis (n=168 interviews) corroborated SCIM findings: surgical participants and their caregivers reported improvement in transfers and ability to perform activities of daily living, including grooming and self-catheterization. Improved use of electronics and ability to operate a motor vehicle were also reported. Post-operative therapy was identified as a critical component of achieving gains. CONCLUSION: Both TT and NT surgery leads to quantitative and qualitative functional gains as compared to the no surgery group. This comparative information should be used to help surgeons discuss treatment options.

Preferences for Participation Measurement Among Individuals Diagnosed With Cancer: A Qualitative Content Analysis.

Individuals with cancer experience occupational participation restrictions, but there is no consensus on how to measure this construct. The objective of this study is to describe the perspectives and preferences of individuals with cancer regarding participation measurement. Forty individuals with brain, breast, colorectal, and lung cancer provided feedback on three participation measures in semi-structured interviews. Through an iterative, team-based content analysis approach, interview text was coded using the study codebook and organized into themes. Core themes included (a) participation measures highlighted occupational priorities, (b) measuring participation can identify supportive care needs, (c) measures must balance thoroughness with speed of completion, (d) measurement timeframe varies by treatment phase, and (e) evaluating community engagement is not a priority for some individuals with cancer. Integrating participation measures into cancer care can support referrals to occupational therapy and supportive services. It is essential to consider time since cancer diagnosis and client priorities when selecting participation measures.

Measuring Occupational Participation among People Diagnosed with Cancer: Interview FindingsOccupational participation focuses on an individual doing what they find important or meaningful in their daily life. Regular assessment of the occupational participation needs of people diagnosed with cancer is important, given their widespread daily life challenges. However, there is no information on preferred approaches for assessing occupational participation. We interviewed 40 people diagnosed with cancer to understand what they liked and disliked about participation surveys and the process of completing them. Key findings included that evaluating participation (a) helped participants reflect on their occupational priorities, (b) can help the medical team have a more holistic view of an individual's needs and connect people with cancer with supportive services, and (c) should be done using brief yet thorough surveys. People diagnosed with cancer recommended less focus on community engagement and more focus on mental health in surveys. Individual priorities and phase of treatment should inform occupational participation survey selection.

Financial burden of men with localized prostate cancer: a process paper.

Background: Many individuals undergoing cancer treatment experience substantial financial hardship, often referred to as financial toxicity (FT). Those undergoing prostate cancer treatment may experience FT and its impact can exacerbate disparate health outcomes. Localized prostate cancer treatment options include: radiation, surgery, and/or active surveillance. Quality of life tradeoffs and costs differ between treatment options. In this project, our aim was to quantify direct healthcare costs to support patients and clinicians as they discuss prostate cancer treatment options. We provide the transparent steps to estimate healthcare costs associated with treatment for localized prostate cancer among the privately insured population using a large claims dataset. Methods: To quantify the costs associated with their prostate cancer treatment, we used data from the Truven Health Analytics MarketScan Commercial Claims and Encounters, including MarketScan Medicaid, and peer reviewed literature. Strategies to estimate costs included: (1) identifying the problem, (2) engaging a multidisciplinary team, (3) reviewing the literature and identifying the database, (4) identifying outcomes, (5) defining the cohort, and (6) designing the analytic plan. The costs consist of patient, clinician, and system/facility costs, at 1-year, 3-years, and 5-years following diagnosis. Results: We outline our specific strategies to estimate costs, including: defining complex research questions, defining the study population, defining initial prostate cancer treatment, linking facility and provider level related costs, and developing a shared understanding of definitions on our research team. Discussion and next steps: Analyses are underway. We plan to include these costs in a prostate cancer patient decision aid alongside other clinical tradeoffs.

Clinical practice guideline and expert consensus recommendations for rehabilitation among children with cancer: A systematic review.

Increased attention to the rehabilitation needs of children with cancer is vital to enhance health, quality-of-life, and productivity outcomes. Among adults with cancer, rehabilitation recommendations are frequently incorporated into guidelines, but the extent to which recommendations exist for children is unknown. Reports included in this systematic review are guideline or expert consensus reports containing recommendations related to rehabilitation referral, evaluation, and/or intervention for individuals diagnosed with cancer during childhood (younger than 18 years). Eligible reports were published in English from January 2000 to August 2022. Through database searches, 42,982 records were identified; 62 records were identified through citation and website searching. Twenty-eight reports were included in the review: 18 guidelines and 10 expert consensus reports. Rehabilitation recommendations were identified in disease-specific (e.g., acute lymphoblastic leukemia), impairment-specific (e.g., fatigue, neurocognition, pain), adolescent and young adult, and long-term follow-up reports. Example recommendations included physical activity and energy-conservation techniques to address fatigue, referral to physical therapy for chronic pain management, ongoing psychosocial surveillance, and referral to speech-language pathology for those with hearing loss. High-level evidence supported rehabilitation recommendations for long-term follow-up care, fatigue, and psychosocial/mental health screening. Few intervention recommendations were included in guideline and consensus reports. In this developing field, it is critical to include pediatric oncology rehabilitation providers in guideline and consensus development initiatives. This review enhances the availability and clarity of rehabilitation-relevant guidelines that can help prevent and mitigate cancer-related disability among children by supporting access to rehabilitation services.

Trajectories of participation in daily life among individuals newly diagnosed with cancer: A 5-month longitudinal study.

PURPOSE: To determine how participation in daily life is impacted during the first six months following a new cancer diagnosis and to identify risk factors for participation restrictions. Patient-reported outcomes (PROs) were used to suggest referrals to rehabilitation services. METHODS: Participants (n = 123) were adults (> 18 years) with the newly diagnosed primary brain, breast, colorectal, or lung cancer. PROs were collected at baseline (within 30 days of diagnosis/treatment initiation), two and five months post baseline. Daily life participation was assessed through the community participation indicators (CPI) (score range: 0-1) and patient-reported outcome measurement information system (PROMIS) ability to participate, (score range: 20-80; mean: 50, SD: 10). PROMIS-43 profile was also completed. Linear mixed-effect models with random intercept evaluated change in participation over time. RESULTS: The baseline total sample mean CPI score was 0.56; patients reported mildly impaired participation based on PROMIS scores (baseline: 46.19, 2-month follow-up: 44.81, 5 months: 44.84). However, no statistically significant changes in participation were observed over the study period. Risk factors for lower participation included receiving chemotherapy, lower physical function, higher anxiety and fatigue, and reduction in employment, p < 0.05. PROs indicated that roughly half of the participants may benefit from physical or occupational therapy or mental health support, but only 20-36% were referred by their medical team. CONCLUSION: People newly diagnosed with cancer experience impaired participation, but they are infrequently referred to supportive services such as rehabilitation. The use of PROs to assess participation, physical function, and mental health can promote access to supportive care services by identifying patients who may benefit from rehabilitation beyond those identified through routine clinical care.

Surgery to restore upper extremity function in tetraplegia-Preferences for early and frequent access to information.

INTRODUCTION: 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. OBJECTIVE: To assess the experiences and preferences of people with cervical SCI and their caregivers in accessing information about surgery to enhance UE function. DESIGN: Prospective cohort study. Participants were followed up for 24 months and completed up to three interviews. SETTING: Tertiary care at academic and affiliated Veterans Administration Health Care Centers. PARTICIPANTS: 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. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Semi-structured interviews about surgical knowledge and experiences. RESULTS: 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. CONCLUSIONS: 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.

Perspectives of Participation in Daily Life From Cancer Survivors: A Qualitative Analysis.

Objective: To characterize how survivors of cancer define participation. Design: Cross-sectional qualitative study. Setting: Participants were enrolled from a large academic medical center in the Midwestern United States. Interviews were conducted over Zoom or phone. Participants: 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. Interventions: Not applicable. Main Outcome Measures: 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. Results: 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. Conclusions: 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.

Living With Cervical Spinal Cord Injury During the COVID-19 Pandemic: A Qualitative Study.

Objective: To understand how COVID-19 has affected the daily lives of people living with cervical spinal cord injury (SCI). Design: Cross sectional qualitative study. Setting: Academic medical center in the Midwestern United States. Participants: Ten community-dwelling individuals (8 men, 2 women), average 11.6 years post-mid-cervical level SCI (N=10). Interventions: Not applicable. Main Outcome Measures: Semistructured interviews were completed by phone. The research team used thematic analysis and inductive strategies to analyze the data in this exploratory investigation. Results: 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." Conclusions: 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.

Developmental delay in infants and toddlers with sickle cell disease: a systematic review.

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.

Limitations of Current Rehabilitation Practices in Pediatric Oncology: Implications for Improving Comprehensive Clinical Care.

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.

Activity competence among infants and toddlers with developmental disabilities: Rasch analysis of the Infant Toddler Activity Card Sort (ITACS).

BACKGROUND: Development 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. RESULTS: A 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). CONCLUSIONS: Findings 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.

Medical and rehabilitation interventions in pediatric central nervous system radiation necrosis: A case report.

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.

Validation of the fine motor subtest of the Bayley-III with children with sickle cell disease using Rasch analysis.

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 < 0.001). 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.

Stress and the Home Environment in Caregivers of Children with Sickle Cell.

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.

Assessments used to measure participation in life activities in individuals with cancer: a scoping review.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Development of a comprehensive pediatric oncology rehabilitation program.

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.