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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Childhood cancer survivors (CCS) frequently experience cognitive challenges, which impact their ability to participate in functional activities. This systematic review examines the effects of nonpharmacological cognitive interventions on functional outcomes (e.g., activities of daily living). We systematically searched eight databases (e.g., PubMed, EMBASE) from 2012 to 2023. Two team members independently screened articles and extracted article, intervention, sample characteristics, and outcome data. We assessed intervention reporting with the Template for Intervention Description and Replication. Fourteen studies met inclusion criteria, representing 12 unique trials. Four of the six trials evaluating Cogmed, a computerized working memory training program, demonstrated functional benefits; small to large effects were observed for academic achievement (Cohen's d = 0.28-0.87) and decreased inattention in daily life (d = -0.36 and -0.98). Other interventions included exergaming, math or reading interventions, occupational therapy, and neurofeedback. Less than half of studies reported on intervention personalization (n = 5), fidelity assessment (n = 4), or cost (n = 1). Study heterogeneity limited our ability to meta-analyze results for functional outcomes. Limited evidence and gaps in quality of intervention reporting are barriers to addressing the cognitive challenges of CCS. Standardizing functional outcome measurement, identifying effective interventions, and improving the quality of intervention reporting could accelerate the translation of intervention research to clinical practice., (© 2024 Wiley Periodicals LLC.)

Introduction. Financial hardship is prevalent among Black prostate cancer survivors and exacerbates health disparities. Characterizing and sharing cost information with patients can facilitate well-informed treatment decision making. Our research explored the direct and indirect costs associated with prostate cancer treatment among Black men and their caregivers. Direct costs included out-of-pocket and insurance-related fees, and indirect costs included the unforeseen costs of care, including patient time, caregiver time, lost wages, and transportation. Methods. We conducted semi-structured interviews with Black prostate cancer survivors and their caregivers to learn about the experience of direct and indirect costs. The interview guide and data analysis were informed by the Measures of Financial Wellbeing framework to gain a better understanding of the material, behavioral, and psychosocial aspects of care-related costs. Guided by a qualitative descriptive approach, we used inductive and deductive coding for our thematic analysis. Results. Eleven prostate cancer survivors with a median age of 68 y (interquartile range [IQR] 62.0-71.5 y) and 11 caregivers with a median age of 64 y (IQR 58.5-70.5 y) participated. We grouped themes into 3 domains and their intersections (i.e., material, behavioral, psychosocial). Participants reported their work and insurance had a significant influence on their finances, treatment costs required rearranging of household budgets, and the weight of indirect costs varied. Ultimately, participants emphasized the significant impact of care costs and the adjustments needed to adapt to them. Discussion. The complexities of material, behavioral, and psychosocial domains of direct and indirect costs of prostate cancer are critical to address when supporting those diagnosed with prostate cancer when making preference-sensitive treatment decisions. The interconnectedness between indirect costs highlights the wide-ranging impact financial well-being has on prostate cancer survivors and caregivers., Highlights: Direct and indirect costs have a wide-ranging impact on the material, behavioral, and psychosocial aspects of financial well-being of Black prostate cancer survivors and their caregivers.These results emphasize the need for sharing cost information to support medical decision making.Future research should focus on the design of cost-sharing interventions that target the complexities of direct and indirect costs collectively, rather than separately., Competing Interests: The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: RW-J and MS were employed by The Empowerment Inc., United States. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for this study was provided, in part, by The Implementation Science Centers in Cancer Control (ISC3; Beau Biden Cancer Moonshot Initiative; NCI P50 CA244431) and Washington University and Siteman Cancer Center Institutional matching funds, CTSA grant UL1 TR002345. The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report., (© The Author(s) 2024.)

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Allison King discloses a consulting payment from Global Blood Therapeutics unrelated to the current work. The other authors have not conflict of interests to declare.

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., (Copyright © 2024 by the American Society of Plastic Surgeons.)

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., (© 2022 American Academy of Physical Medicine and Rehabilitation.)

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., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)