Abstract
OBJECTIVE: The occurrence of neuropsychological late effects in childhood brain tumor patients is well known in literature and practice, as well as the use of neuropsychological testing and ...therapy procedures. Despite guidelines, actual care is quite heterogeneous and often does not meet the needs due to lack of resources. Therefore, a standardized tool to improve awareness of and access to neuropsychological assessment, but even more treatment was developed. METHODS: The core of this Quality-Improvement project is a multilevel and interdisciplinary approach characterized by iterative processes (PDSA-cycles): (1) conceptualization by interdisciplinary, multicenter teams of experts, (2) consensus in Delphi surveys by medical, nursing and psychosocial experts (N=45) and final approval by the steering group. (3) Pilot phases (N=44): Manageability and acceptance, emotional well-being and the degree of information were recorded using a process-oriented screening. RESULTS: The expert meetings resulted in two booklets ("Look closely - Psychosocial assessment" & "1,2,3 - All about Neuropsychology"): Each booklet offers creative methods with a high prompting character to motivate the child to participate actively in two face-to-face sessions (psychoeducational, work and exercise and reflection section). They enable patients to make themselves experts on these topics with age-appropriate, interactive methods. The Delphi survey revealed a consensus of 69%-93%. Patients using the Psychosocial-assessment booklet showed generally low negative emotions and stable positive emotions, which significantly increased during the second session (Z = 2.156, p = .031). Moreover, positive emotions increase significantly during the second session (Z = 2.805, p = .005). Self-indicated degree of information increases significantly with both booklets (Psychosocial assessment: Z = 3.133, p = .002; Neuropsychology: Z = 2.751, p = .006). CONCLUSION: The results illustrate a positive emotional approach to neuropsychological assessment and treatment. Likewise, the rapid increase in expert knowledge supports access to this specific topic and can be considered a minimum standard.
Abstract
A brain tumor treatment has previously been associated with long-term neurocognitive sequelae. However, clinical profiles differ between certain patient subgroups. We investigated the impact ...of tumor location, radiotherapy (RT), and age at diagnosis in childhood brain tumor survivors on long-term cognitive outcomes. Adult survivors (n=32) of pediatric brain tumors (n=11 infratentorial, n=21 supratentorial; 14 astrocytomas, 3 craniopharyngiomas, 2 ependymomas, 2 germinomas, 1 hemangioblastomas, 4 medulloblastomas, 6 nervus opticus gliomas) participated in this neuropsychological study (n=11 RT) (16.8-35.1 years old, >2years after treatment, mean age at diagnosis = 9.2 years, 50% male). An extensive neurocognitive test battery was used to assess intelligence scales (n=5), verbal and visual memory (n=2), and language (n=3). In order to investigate the effects of tumor location (infra- versus supratentorial), RT (yes vs. no), and age at diagnosis on the cognitive scores, a multivariate ANCOVA model was tested including the main effects and interaction between age and RT. Of all included scales, only visual memory was significantly associated with the risk factors. More specifically, patients who received RT (F=10.3, p=.004) and were younger at diagnosis (F=6.9, p=.014) scored worse on this task. Furthermore, the interaction effect between these factors was also significant (F=8.8, p=.006). These findings suggest that younger patients could be more vulnerable to the radiotoxic effects to visual memory outcomes. Tumor location (supra- vs. infratentorial) was not significantly associated with any outcome. In this study, only visual memory appeared to be associated with the risk factors of interest. Both radiotherapy and age at radiotherapy, as well as their interaction, could be risk factors for altered neurodevelopmental patterns of brain areas associated with visual memory.
Abstract
OBJECTIVE: School reentry support focusing on providing information to schools and communication between patient/family-hospital-school is defined as a psychosocial standard of care in ...pediatric oncology (Thompson et al., 2015). This is critical for students with brain tumors (BT) - although it is not yet universally implemented - especially during follow-up, as they are a risk group for late effects. Due to long distances between family-hospital-school, limited personnel capacities and since 2020 Covid-19 restrictions, an online-event (OE) for teachers from external schools was designed, with the aim of: (1) strengthening cooperation, (2) breaking down barriers and (3) increasing level of knowledge.
METHODS: 54 teachers participated in each of two OEs. Content was presented by an interdisciplinary team (clinician, clinical/neuropsychologist, social worker, teacher), followed by time for sharing experience. Two months after event 2, participants were asked to complete an evaluation in an anonymous online survey. Supportive and inhibiting factors for successful school reintegration were included in the survey and statistically analyzed.
RESULTS: 54% of 23 respondents (70% teaching > 10 years) felt that their training before the event did not prepare them adequately for a teaching setting with seriously ill children (1-3 points on a 10-point Likert-scale). 92% rated their knowledge greater after the event. All interdisciplinary inputs were rated very useful and practical (79-88%: 8-10 points). 38% felt relieved to got to know contact persons. 33% rated teaching a student with BT as fundamentally challenging and felt more confident after the event.
CONCLUSION: The results of this pilot project indicate that an online-information-event can increase knowledge and cooperation. Resulting promoting and inhibiting factors for school reintegration will be incorporated into future concept improvement. The findings further highlight the great importance of ongoing support in the form of a reintegration teacher and interdisciplinary input for schools to appropriately support students with BT.
Abstract
INTRODUCTION: Procedural memory (PM) is a skill learning system that allows, through training, the automatization of procedures and progressive improvement of performances. The aim of this ...work was to explore the impact of a posterior fossa tumor (PFT) on PM. We hypothesized that motor adaptation, depending on cortico-cerebellar system, was impaired in PFT survivors treated with and without radiotherapy, and motor sequence learning, depending on cortico-striatal system, was only impaired in PFT treated with radiotherapy. METHODS: We investigated PM in 60 participants from the IMPALA study (NCT04324450) divided into three groups: 39 cured from a PFT in childhood (22 irradiated (PFT+RT group) and 17 non-irradiated (PFT group)) and 21 healthy volunteers (Control group) matched on age, sex and handedness with the PFT+RT group. We used a visuo-motor learning test, the Serial Reaction Time task (SRTT) and a motor adaptation task (MAT) of backwards handwriting. ANOVA and mixed models were used for statistical analysis. RESULTS: SRTT performance analysis showed an effect of Block in specific sequence learning (F(1)48.70,p<0.001) with a preserved specific learning in the three groups. However individual differences were observed with 7/22 patients in PFT+RT group and 4/17 in PFT group who did not have specific learning. MAT performance analysis showed an effect of interaction between Orientation (forward or backward) and Group for speed (F(2)15.58,p<0.001), linearity (F(2)8.39,p<0.001) and amplitude standard deviation (F(2)15.70,p<0.001) traducing an impairment both in PFT+RT and PFT groups, more marked in the PFT+RT group. CONCLUSION: We showed impairment, predominantly on motor adaptation but also, at individual level, in motor sequence learning whose origin requires additional work. This study brings new insights on the long-term impact of a PFT in childhood on a rarely investigated part of memory that is PM.
Abstract
BACKGROUND: Adaptive behavior is defined as the effectiveness and degree to which an individual meets social/cultural standards of personal independence and social responsibility. Patients ...treated for brain tumor are at risk of alteration of adaptive behaviour that, with a reduced intellectual function, makes diagnosis of mental retard. OBJECTIVE: The aim of this study was to evaluate the adaptive behaviour of patients treated for malignant brain tumor in the first three years of life and the variables that may correlate with its alteration. PATIENTS AND METHODS: Twelve survivors of brain tumor diagnosed in the first three years of life followed in the Pediatric Hematology and Oncology Department of Padua between January 2000 and December 2020 were enrolled in this study. We defined the level of the adaptive behaviour by evaluation adaptive behavior questionnaire (ABAS II) completed by the parents. RESULTS: None of the patients shows a high level of adaptive behavior. Preliminary evidences suggest that, the level of adaptive behavior may be influenced by the sex, irradiation and time from the end of treatment. In details, females show a higher level of performance than males, patients not treated with radiotherapy performed better than patients irradiated and longer-term survivors have a better level of adaptive behaviour. CONCLUSIONS: This study confirms that patients treated for brain tumor show a lower level of adaptive behaviour than peers. The future objective is to assess adaptive behaviour at many times to recognize the problem early.
Abstract
BACKGROUND: Cognitive impairments following pediatric brain tumors are generally attributed to tumor site, surgical intervention, complications as well as to nonsurgical treatment. We ...investigated impairments for patients with medulloblastoma (MB), ependymoma (EP) and low-grade glioma (LGG) of the cerebellum treated within the German pediatric brain tumor network to compare and rank major determents. PATIENTS+METHODS: Following protocol treatment, 245 patients with MB (n=106), EP (n=32), and cerebellar LGG (n=107, surgery only) were examined 2 + 5 years after diagnosis using the German “Neuropsychological-Basic-Diagnostic” (NBD) tool based on the Cattell-Horn-Carroll model for intelligence. Within this retrospective study, multiple linear regression models were applied. RESULTS: The MB+EP vs. LGG-cohort differed slightly in median age at diagnosis (8.7/6.1 years) and location (cerebellar hemispheres: 8%MB+EP/49.5%LGG), while sex-ratio, grade of resection, extent of pre-operative hydrocephalus were comparable. With smaller median tumor-volume in the MB+EP vs. LGG-cohort (34.1/44.1cm3), ranges broadly overlapped. Median scores of age-appropriate tests were in the lower normal range for all patients for fluid and crystallized intelligence, selective attention, visual-spatial processing (VSP) and verbal short-term memory (median=93-103), but distinctly below for processing speed (PS), and psychomotor speed abilities (PMS) (median=65-84). Higher doses of craniospinal irradiation (>23.4Gy/23.4Gy) resulted in lower scores for most domains for MB-patients compared to LGG-patients (e.g., PS-estimate: >23.4Gy:-27.71, p=0.026/23.4Gy:-9.93, p=0.286). EP-patients (surgery+54Gy local radiation) scored better than LGG-patients except for PS (estimate:-15.65, p=0.111). Impairments were accentuated with higher degrees of hydrocephalus (estimate:-7.64, p=0.103) in patients with incomplete resection (estimate:12.23, p=0.006) for PMS both hands. CONCLUSION: Following age-adapted comprehensive treatment, survivors of a cerebellar tumor show significant impairments of PMS abilities in our trials. Our data suggest that slow growing LGG impair neurocognitive development more than local radiotherapy for ependymoma, while craniospinal irradiation compromises VSP and PS in MB. Initial symptomatic intracranial pressure remains a strong predictor for general neuropsychological impairment.
Purpose
Supporting the capture and use of patient-reported outcomes (PROs) at the point-of-care enriches information about important clinical and quality of life outcomes. Yet the ability to scale ...PROs across healthcare systems has been limited by knowledge gaps around how to manage the diversity of PRO uses and leverage health information technology. In this study, we report learnings and practice insights from UW Medicine’s practice transformation efforts to incorporate patient voice into multiple areas of care.
Methods
Using a participatory, action research approach, we engaged with UW Medicine clinical and administrative stakeholders experienced with PRO implementation to inventory PRO implementations across the health system, characterize common clinical uses for PROs, and develop recommendations for system-wide governance and implementation of PROs.
Results
We identified a wide breadth of PRO implementations (
n
= 14) in practice and found that nearly half (47%) of employed PRO measures captured shared clinical domains (e.g., depression). We developed three vignettes (use cases) that illustrate how users interact with PROs, characterize common ways PRO implementations support clinical care across the health system (1)
Preventive care,
(2)
Chronic/Specialty care
, and (3)
Surgical/Interventional care)
, and elucidate opportunities to enhance efficient PRO implementations through system-level standards and governance.
Conclusions
Practice transformation efforts increasingly require integration of the patient voice into clinical care, often through the use of PROs. Learnings from our work highlight the importance of proactively considering how PROs will be used across the layers of healthcare organizations to optimize the design and governance of PROs.
Background
It is important to understand the interaction of various predictors with oral health‐related quality of life (OHRQoL) to better design effective interventions to improve OHRQoL.
Aim
The ...aim of this study was to develop and validate a conceptual model evaluating the factors affecting the OHRQoL in children.
Design
The study group consisted of 754 parent‐child dyads. The data collection tools were a socio‐demographic data form, the Early Childhood Oral Health Impact Scale (ECOHIS), Corah Dental Anxiety Scale (C‐DAS), Children's Fear Survey Schedule‐Dental Subscale (CFSS‐DS), and an oral and dental health examination form. A conceptual model was developed to examine the factors affecting OHRQoL in children consisting of four endogenous and four exogenous variables. Path analysis was used to test the compatibility of the conceptual model.
Results
OHRQoL was associated with parental socio‐economic status (β = −0.12; P < .001), dental anxiety (β = −0.15; P < .001), and oral health behaviours (β = −0.13; P < .001). Although parental dental anxiety had the strongest direct effect on OHRQoL, children's oral health behaviours had the strongest indirect effect.
Conclusions
This study revealed a valid demonstrable path of association between parental socio‐economic status, dental anxiety, childhood dental anxiety, oral health behaviours, and OHRQoL.
Purpose
The EQ-5D-3L and 5L are widely used generic preference-based instruments, which are psychometrically sound with the general population, but little is known about the instruments’ feasibility ...in the elderly. Therefore, this systematic review summarises the available literature with regard to the feasibility properties of the instruments in the elderly population.
Methods
We conducted a systematic search in PubMed, PsycInfo and EuroQol databases using pre-specified vocabulary and inclusion/exclusion criteria to identify publications until November 2020. Study characteristics and outcomes referring to the feasibility of the EQ-5D-3L and 5L in the elderly were extracted, if all study participants were at least 65+ years.
Results
We identified 17 studies reporting feasibility outcomes based on four criteria: missing values, completion rates, completion time and broad qualitative statements referring to the completion. Missing values per dimension ranged from 0 to 10.7%, although being mostly below 7%. The completion rate was around 90% or better, whereas the EQ VAS rating was missing from 2.3 to 25.3% of the respondents. Only two of the included studies examined the EQ-5D-5L; 15 studies reported on the EQ-5D-3L.
Conclusion
Comparing our findings against the general population from published literature, we find that feasibility outcomes in older age groups are just below that of younger populations. Furthermore, older respondents have a higher propensity of requiring assistance or even an interviewer-based approach. Nonetheless, the reviewed literature indicates that the EQ-5D-3L still has good feasibility properties and, hence, is highly applicable in older respondents. However, further research is needed to explore feasibility properties of the EQ-5D-5L in this population.
Aims
This study systematically reviews the literature regarding preoperative stoma site marking and discusses the effectiveness of the procedure on complication rates, self‐care deficits and ...health‐related quality of life (HRQOL).
Design
Systematic review and meta‐analysis.
Data source
Our review was conducted following the PRISMA guidelines. PubMed, EMBASE, Cochrane and CINAHL databases were searched to obtain articles published in English. Articles were also retrieved from Korean databases as well. Our last search was conducted on 2 June 2019.
Review methods
Two reviewers independently selected relevant studies, evaluated their methodological quality and extracted data. Experimental and observational studies were included. Our main focus was on complication rates, self‐care deficits and HRQOL. We conducted meta‐analysis using the statistical software spss 25.0 and Stata 13.0.
Results
Of the 1,039 articles reviewed, 20 were included for review, and 19 were used for quantitative synthesis. Preoperative stoma site marking reduced complication rates (odds ratio OR: 0.47; 95% confidence interval CI: 0.36–0.62; I2: 70.6%), lowered self‐care deficits (OR: 0.34; 95% CI: 0.18–0.64; I2: 0%), and increased HRQOL (standardized mean difference, 1.05; 95% CI: 0.70–1.40; I2: 0%). Quality appraisal results for both the individual studies and the studies overall were excellent. The possibility of publication bias was low.
Conclusions
Our findings indicate that preoperative stoma site marking improves patient outcomes: stoma‐related complication rates and self‐care deficits decrease and HRQOL rises. For this reason, preoperative stoma site marking should be a mandatory procedure in clinical settings. The practice should also be supported by policymakers and healthcare expert associations.
Impact
Preoperative stoma site marking reduces overall complication rates by 53% and skin problems by 59%. Preoperative stoma site marking also improves self‐care and health‐related quality of life. We recommend that preoperative stoma site marking should be a mandatory procedure in clinical settings.
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