"Why We Keep Coming Back": Family and Provider Perspectives on Factors Influencing Long-term Follow-up for Pediatric Cancer Survivorship Care.

PURPOSE: The majority of childhood cancer survivors do not follow-up for long-term risk-based screening for recurrent illness and treatment late effects, despite a high prevalence of secondary morbidities. The primary aim of this study was to investigate factors that influence long-term follow-up for survivorship care, from the perspectives of providers, patients, and caregivers. MATERIALS AND METHODS: A semistructured interview was designed to elicit stakeholder perspectives on factors that facilitate or impede routine clinic visits after completion of cancer therapy. Results were analyzed using a qualitative framework method. RESULTS: Providers, patients, and caregivers identified a wide range of factors that might influence long-term follow-up for care. All respondents noted the importance of efficient clinical operations, resources such as parking, provider behaviors, rapport/attachment, and patient/family logistics. Compared with patients/caregivers, providers more frequently mentioned institutional operations, their own education and skills, patient/family understanding and motivation, and interpersonal processes such as communication style. Families more frequently mentioned clinic environment, and patients more frequently noted the importance of having a family member present, something neither providers nor caregivers reported. CONCLUSIONS: Providers, patients, and patient caregivers have different perspectives regarding factors that may influence follow-up for long-term survivorship care. Understanding these differences can help inform efforts to improve follow-up.

The relationship between chronic health conditions and cognitive deficits in children, adolescents, and young adults with down syndrome: A systematic review.

BACKGROUND: Individuals with Down syndrome are predisposed to a number of chronic health conditions, but the relationship between these conditions and cognitive ability is not clear. The primary objective of this systematic review is to assess this relationship by evaluating studies that measure cognitive performance in the context of Down syndrome-associated chronic health conditions. METHODS: A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Studies included in this review (1) included children, adolescent, and young adult participants with Down syndrome and one or more co-occurring health conditions; (2) were quantitative; and (3) reported outcomes related to both chronic health conditions and cognitive performance. A set of predetermined chronic health conditions that are common in Down syndrome (e.g. sleep disorders, congenital heart disease, thyroid disease, seizure disorders, and pulmonary hypertension) were selected based on prevalence rates in Down syndrome. RESULTS: Fifteen studies met inclusion criteria. The majority these of studies assessed cognitive performance in association with sleep disorders (47%) and congenital heart disease (47%). Fewer studies reported on the effect of thyroid disease (7%) and seizure disorders (7%) on cognitive ability. None of the studies reported cognitive outcomes related to pulmonary hypertension. Of the chronic health conditions evaluated, associations between sleep disorders and cognitive dysfunction were most common among individuals with Down syndrome. CONCLUSIONS: Individuals with Down syndrome exhibit deficits in cognitive ability, particularly related to attention, executive function and verbal processing. These deficits may be further exacerbated by the presence of chronic health conditions, particularly sleep disorders. Individuals with Down syndrome and co-occurring sleep disorders may benefit from early interventions to mitigate their risk for adverse cognitive outcomes.

An fNIRS investigation of associative recognition in the prefrontal cortex with a rapid event-related design.

BACKGROUND: Functional near-infrared spectroscopy (fNIRS) measures hemodynamic changes at the cortical level. The use of fNIRS is growing in popularity for studying cognitive neuroscience in which event-related designs are widely used with functional magnetic resonance imaging (fMRI). However, the applicability of event-related designs with fNIRS has not been fully understood. Therefore, the present study employed fNIRS with a rapid-presentation event-related design for investigating prefrontal cortical activity during complex associative recognition. NEW METHOD: Participants studied a list of word pairs and were later given an associative recognition test. Throughout the experiment, each event was presented rapidly (∼4s). Data were sorted based on accuracy of associative memory judgments and analyzed using the general linear model (GLM) with an event-related design. RESULTS: During retrieval, significant increases in oxygenated hemoglobin concentrations were observed in dorsolateral and ventrolateral prefrontal regions for successful associative recognition. When comparing retrieval to encoding, significant increases in oxygenated hemoglobin concentrations were also observed in dorsolateral prefrontal cortex. COMPARISON WITH EXISTING METHOD: The current fNIRS results corroborate previous fMRI findings that have demonstrated the involvement of dorsolateral and ventrolateral prefrontal cortex in associative recognition. Therefore, the present study validates versatile use of fNIRS with a rapid-presentation event-related design in the investigation of neural mechanisms of associative memory. CONCLUSION: The findings of this study provide evidence that fNIRS can be a viable research method for investigating complex cognitive processes commonly of interest in cognitive neuroscience. Taken together, these results demonstrate that fNIRS can be a cost-effective and accessible experimental tool for cognitive neuroscience.