Development and field testing of a neuro psychomotor multidimensional grid for the assessment of children with cns tumor.

Central Nervous System (CNS) tumors are the most common pediatric solid tumor and development neuro psychomotor (DNPM) therapy can contribute to the rehabilitation of these children. This paper describes the development of a DNPM multidimensional assessment grid for children with CNS tumor (DNPM-CNS grid).The development process included 4 phases: (P1) literature review and grid development (Version 1.0), (P2) two rounds consultations with experts (Version 1.1 and 2.0), (P3) field testing, (P4) final revision (Version 3.0).(P1) The DNPM-CNS grid was developed based on previous tools and manuals and on clinical experience with this patient population. (P2) A total of 52 questionnaires were filled in by experts about relevance of assessment areas, pertinence, comprehensibility and feasibility of the grid. Average scores ranged from 7.6 to 10. (P3) At case level, good inter-rater agreement scores (78%) and limited non-evaluability rates (18%) emerged. At item level, 27% of items reached high disagreement and 26% high not-evaluability rates. The qualitative assessment was judged clinically useful for planning the neuro-oncology rehabilitation treatment and a good feasibility of the DNPM-CNS grid emerged both for preschool and school-age children. (P4) The final version of the grid consists of 8 assessment areas with 133 items.The DNPM-CNS grid is a comprehensive tool that can guide the overall DNPM assessment in a limited amount of time. It can be used as a screening tool to customize more specific assessments. Further research is needed to better characterize grid psychometric properties.Supplemental data for this article is available online at https://doi.org/10.1080/08880018.2021.1948648 .

Underutilisation of Physical Rehabilitation Therapy by Cancer Patients in Korea: a Population-based Study of 958,928 Korean Cancer Patients.

BACKGROUND: Advanced cancers are associated with more severe symptoms and greater impairment. Although most patients with metastatic cancer would benefit from rehabilitation, few patients receive appropriate rehabilitation therapy. We explored the use of rehabilitation therapy by cancer patients. Our data represented the entire population of Korea. The analyses were performed according to cancer type and stage. METHODS: We extracted rehabilitation utilization data of patients newly diagnosed with cancer in the period of 2011-2015 from the Korea Central Cancer Registry, which is linked to the claims database of the National Health Insurance Service (n = 958,928). RESULTS: The utilisation rate increased during the study period, from 6.0% (11,504) of 192,835 newly diagnosed patients in 2011 to 6.8% (12,455) of 183,084 newly diagnosed patients in 2015. Patients with central nervous system (28.4%) and bone (27.8%) cancer were most likely to undergo physical rehabilitation. The rehabilitation rate was higher in patients with metastatic than localised or regional cancer (8.7% vs. 5.3% vs. 5.5%). CONCLUSION: This claims-based study revealed that rehabilitation therapy for cancer patients is underutilised in Korea. Although patients with metastasis underwent more intensive rehabilitation than patients with early stage cancer, those without brain and bone tumours (the treatment of which is covered by insurance) were less likely to use rehabilitation services. Further efforts to improve the use of rehabilitation would improve the outcomes of cancer patients.

The Italian consensus conference on the role of rehabilitation for children and adolescents with leukemia, central nervous system, and bone tumors, part 1: Review of the conference and presentation of consensus statements on rehabilitative evaluation of motor aspects.

Because of increasing survival rates in pediatric oncology, attention is focusing on cancer and its treatment-related side effects. Rehabilitation may reduce their impact. However, the literature does not provide strong evidence regarding rehabilitation pathways. Therefore, the Italian Association of Pediatric Hematology and Oncology organized a consensus conference on the role of rehabilitation of motor impairments in children/adolescents affected by leukemia, central nervous system, and bone tumors to define recommendations for daily practice. The grading of recommendation assessment, developing and evaluation (GRADE) method was used in order to formulate questions, select outcomes, evaluate evidence, and create recommendations. This paper includes the results on the rehabilitation assessment.

Effects of two types of exercise training on psychological well-being, sleep, quality of life and physical fitness in patients with high-grade glioma (WHO III and IV): study protocol for a randomized controlled trial.

BACKGROUND: There is existing evidence on whether and to what degree regular exercise training improves the quality of life (QoL) among cancer survivors. However, in regards to patients with high-grade glioma (HGG; WHO grade III and IV), no conclusive study has been performed so far. The present trial aims to fill this gap by examining whether psychological well-being, sleep, QoL and physical fitness might be improved with two different types of exercise, as compared to an active control condition. Active control condition represent individuals participating at regular meetings to talk about their current life situation, though, the meetings were not intended as that of the psychotherapy group. Regular meetings are of the same frequency, duration, and intensity as the exercise interventions. METHODS: A total of 45 patients with HGG after undergoing neurosurgery and adjuvant radiotherapy, chemotherapy, or chemoradiotherapy will be consecutively and randomly assigned to (a) an endurance training, (b) a resistance training or (c) to an active control condition. The intervention will last for 6 consecutive weeks, consisting of 2 weekly sessions (30-45 min per session). Measurements would take place at three time points, namely at the beginning of the study (baseline), 3 weeks after the beginning of the study, and 6 weeks after the beginning of the study. The last measurement also represents the end of the study. Aerobic exercise performance will be assessed objectively with a 6-min walking test, and a handgrip test will be used to assess the upper body strength. Further, participants will complete a battery of questionnaires covering sociodemographic information, QoL, sleep quality and sleep patterns, coping with stress, state- and trait-anxiety, depression, and fatigue. In parallel, experts will use the Hamilton Depression Rating Scale to determine and rate participants' symptoms of depression. SIGNIFICANCE: The present study will be the first to investigate and compare the impact of two different exercise modalities, namely endurance and resistance training, on physical fitness and dimensions of well-being, and sleep among patients with HGG who underwent neurosurgery followed by adjuvant radiotherapy, chemotherapy, or chemoradiotherapy. Importantly, unlike the majority of previous studies, the control condition consists of an active set-up to detect possible factual beneficial effects of exercise training, irrespective of social interactions. Trial registration https://register.clinicaltrials.gov ; identifier: NCT03775369.

Information Needs Regarding Cognitive Late Effects of Caregivers of Central Nervous System Tumor Survivors.

Pediatric central nervous system (CNS) tumor survivors are at risk for experiencing cognitive late effects (CLEs). Caregivers of survivors may be unaware of these changes or receive untimely information regarding CLEs. Conversely, health care providers (HCPs) may face barriers to providing education. This study aims to (a) understand the knowledge and resource gap for caregivers regarding CLEs and (b) explore how HCPs currently provide education. Caregivers and HCPs were both interviewed. Qualitative analysis was performed using emergent coding. Fifteen caregivers and eight HCPs participated. Caregivers generally felt confident in assisting their survivor but experienced "information overload" during initial diagnosis and treatment. HCPs reported difficulties in determining appropriate timing for education and perceived that caregivers typically lack understanding of CLEs. Caregivers should be aware of and understand a survivor's risk for CLEs to help survivors manage changes. With increasing survival rates of pediatric CNS tumor patients, HCPs must be prepared to provide appropriate education and referrals regarding CLEs for long-term care.

Development of the perceived barriers scale: a new instrument identifying barriers to career development and employment for young adult survivors of pediatric CNS tumors.

PURPOSE: Given the significant employment disparities for survivors of pediatric brain tumors, there is increased need to conduct vocational and career research with this group. The purpose of the present study was to construct an instrument, the Perceived Barriers Scale, that is psychometrically sound and has both clinical and research application related to career and employment issues of pediatric brain tumor survivors. METHOD: The participants consisted of 110 young adult central nervous system survivors of childhood cancer aged between 18 and 30 years old (M = 23.05, SD = 3.36) who were identified by the DFCI Pediatric Brain Tumor Clinic. The 12-item Perceived Barriers Scale was developed from a comprehensive literature review, clinical interviews conducted with survivors of pediatric brain tumors, and feedback from multidisciplinary providers. Exploratory factor analysis and correlations were completed to examine the initial psychometric properties of the scale. RESULTS: Exploratory factors analysis identified two factors that accounted for 57.92% with the two factors labeled as internal barriers and external barriers. All factors loaded significantly onto their respective factors (.48 to .88). The results of the correlational analysis found significant relationships between both internal barrier and external barrier subscales and CSE and WHODAS-2 providing initial support for the construct validity of the Perceived Barriers Scale. CONCLUSIONS: Overall, the study findings indicate good psychometrics with the brevity of the scale increasing potential application and utilization in both research and clinical settings. IMPLICATIONS FOR CANCER SURVIVORS: Identification of employment barriers for brain tumor survivors provides opportunity for more targeted vocational intervention.

Vocational identity, positive affect, and career thoughts in a group of young adult central nervous system cancer survivors.

The aims of this study were as follows: (a) to compare levels of career thoughts and vocational identity between young adult childhood central nervous system (CNS) cancer survivors and noncancer peers and (b) to investigate the contribution of vocational identity and affect on career thoughts among cancer survivors. Participants included 45 young adult CNS cancer survivors and a comparison sample of 60 college students. Participants completed Career Thoughts Inventory, My Vocational Situation, and the Positive and Negative Affect Schedule. Multivariate analysis of variance and multiple regression analysis were used to analyze the data in this study. CNS cancer survivors had a higher level of decision-making confusion than the college students. Multiple regression analysis indicated that vocational identity and positive affect significantly predicted the career thoughts of CNS survivors. The differences in decision-making confusion suggest that young adult CNS survivors would benefit from interventions that focus on providing knowledge of how to make decisions, while increasing vocational identity and positive affect for this specific population could also be beneficial.

Enhancing psychosocial outcomes for young adult childhood CNS cancer survivors: importance of addressing vocational identity and community integration.

The purpose of this study was to examine the relationship between vocational identity, community integration, positive and negative affect, and satisfaction with life in a group of young adult central nervous system (CNS) cancer survivors. Participants in this study included 45 young adult CNS cancer survivors who ranged in age from 18 to 30 years (mean=22, SD=3.62), with a mean age at diagnosis of 8.8 years. Four standardized instruments were used to assess the individual's affect, satisfaction with life, vocational identity, and self-perceived level of community integration. Pearson correlation analyses were carried out to examine the relationships between the satisfaction with life and positive and negative affect, vocational identify, and community integration. A hierarchical linear regression was then performed to determine how well these variables predict satisfaction with life among CNS cancer survivors. Significant positive correlations were found between life satisfaction and positive affect (r=0.423, P<0.01), as well as life satisfaction and community integration (r=-505, P<0.001). A positive correlation between life satisfaction and vocational identity was only marginally significant (r=0.312, P<0.05). Regression results indicate that the model explained 29% of the variance with community integration making a unique contribution. The largest contribution of this study is that the findings provide initial evidence that addressing vocational identity and community integration may be important constructs in improving young adult CNS survivors' overall levels of satisfaction with life. These constructs have not been typically addressed in psychosocial cancer treatment programs.

Educational achievement in Swiss childhood cancer survivors compared with the general population.

BACKGROUND: The objective of this study was to describe educational achievements of childhood cancer survivors in Switzerland compared with the general population. In particular, the authors investigated educational problems during childhood, final educational achievement in adulthood, and its predictors. METHODS: Childhood cancer survivors who were aged <16 years at diagnosis from 1976 to 2003 who had survived for ≥5 years and were currently ages 20 to 40 years received a postal questionnaire during 2007 to 2009. Controls were respondents of the Swiss Health Survey ages 20 to 40 years. Educational achievement included compulsory schooling, vocational training, upper secondary schooling, and university degree. The analysis was weighted to optimize comparability of the populations. The authors analyzed the association between demographic and clinical predictors and educational achievement using multivariable logistic regression. Subgroup analyses focused on survivors aged ≥27 years. RESULTS: One-third of survivors encountered educational problems during schooling (30% repeated 1 year, and 35% received supportive tutoring). In the total sample, more survivors than controls achieved compulsory schooling only (8.7% vs 5.2%) and fewer acquired a university degree (7.3% vs 11%), but more survivors than controls achieved an upper secondary education (36.1 vs 24.1%). In those aged ≥27 years, differences in compulsory schooling and university education largely disappeared. In survivors and controls, sex, nationality, language region, and migration background were strong predictors of achievement. Survivors of central nervous system tumors or those who had a relapse had poorer outcomes (P < .05). CONCLUSIONS: Childhood cancer survivors encountered problems during schooling and completed professional education with some delay. However, with the exception of patients who had central nervous system tumors and those who experienced a relapse, the final educational achievement in survivors of child cancer was comparable to that of the general population.

Central nervous system tumors of childhood and adolescence: the rehabilitation challenge of survival and "true cure".

We have described four typical clinical scenarios involving management of children and young people presenting with central nervous system (CNS) tumors. We identify the biological stages of brain development and describe the tumor-related and treatment-related late consequences faced by those travelling along the rehabilitation pathway. The long term clinical challenges for these young people extend from monitoring for tumor recurrence, second tumor development, endocrine deficits and the need for a co-ordinated approach to rehabilitation during their transition from pediatric to adult services. This is the main focus for this series, the conversion of a 'cancer cure' to a 'true cure'.

Strategy for long-term surveillance at the German Childhood Cancer Registry - an update.

BACKGROUND: The objective of this paper is to provide information about the quality (e.g. completeness, response) of long-term surveillance in German paediatric oncology and haematology based on the structures implemented by the German Childhood Cancer Registry (GCCR). METHODS: The GCCR contacts parents or patients to collect and update information on a minimal set of follow-up health status data (e.g. late relapses, subsequent neoplasms, current address) and exchanges this information regularly with the appropriate clinical trials. RESULTS: Between 2006 and 2010, GCCR approached a total of about 20,000 patients (contact at the age of 16 years, inquiry concerning the health status) in the context of long-term surveillance. 11,000 addresses of former patients had to be researched via municipal registrar's offices. The response rates ranged from 56% to 68%, the research in municipal offices provided 93-96% valid addresses. Of 46,115 patients diagnosed between 1980 and 2009, 25,283 are in long-term surveillance in 2010. DISCUSSION: Long-term surveillance requires considerable logistic effort at GCCR and requires that thousands of letters be mailed each year in order to ensure regularly updated information. Long-term surveillance is indispensable for a better understanding of late effects, subsequent neoplasms and quality of life of former childhood cancer patients.

"What's the point?" exploring rehabilitation for people with 1° CNS tumours using ethnography: patients' perspectives.

BACKGROUND AND PURPOSE: Primary central nervous system (1° CNS) tumours represent 2% of cancers. They record the third highest mortality from cancer in the 18-35 age group in the UK today. Despite improving medical treatments, prognosis remains poor, with more patients experiencing residual complex functional deficits. Rehabilitation for these patients is scantily researched. Observational studies demonstrate improved function following inpatient and some outpatient multi-professional rehabilitation. Comparative recovery and functional improvement between patients with 1° CNS tumours and differing oncological and other neurological diagnoses is shown. Qualitative papers explore patient's values of medical treatment, demonstrating themes of hope and improved quality of life (QOL). No studies explore the significance of rehabilitation for these patients. The aim of this study was to discover the meaning of rehabilitation for people with this life-limiting illness through ethnographic enquiry. METHODS: Fieldwork data, primarily written narratives, field notes and interviews, were collected from 10 patients with 1° CNS tumours receiving physiotherapy at a UK specialist cancer hospital. They were asked what they thought the purpose of rehabilitation was in the context of their disease. Thematic analysis explored this data. RESULTS: Patient experience provided insightful perception of the beneficial role of rehabilitation in the context of their incurable disease. Main emergent themes included independence, confidence, 'professional talk' (the broader sense of communication through talk, touch and therapeutic handling) and hope. An analogy presents an analytical model of the themes. Incidental findings identified difficulty accessing services. CONCLUSION: Rehabilitation intervention offers positive contributions to patients with 1° CNS tumours improving QOL irrespective of the stage of their disease. With equal access to cancer services, a key aim advocated in national directives in health-care today, it is essential that patients receiving treatment for this life-limiting disease have timely access to rehabilitation services in conjunction with holistic medical management.

Prevalence of Norwegian patients diagnosed with childhood cancer, their working ability and need of health insurance benefits.

The object of this study was in a population-based material to investigate the prevalence of patients diagnosed with childhood cancer, and compared to the general population to assess working ability, yearly income and need for health insurance benefits in patients surviving at least five years after treatment for childhood CNS tumours or hematological malignancies. During the period January 1, 1970 to December 31, 2002 the prevalence in the Norwegian population of patients diagnosed with any childhood cancer increased from 12.2 (473/3 888 305) to 65.1 (2944/4 524 066) per 100 000 population. The proportion of survivors in need of any health insurance benefit was for CNS tumours 47.1% and for hematological malignancies 21.0%. The proportion in the age group 16-67 receiving disability pension for CNS tumours was 94/454 (20.7%) compared to 21/575 (3.7%) for patients treated for hematological malignancies (p < 0.001). Of patients given radiotherapy 25/70 (35.7%) received disability pension, compared to 90/959 (9.4%) in unirradiated patients, p < 0.001. Yearly income and working ability was particularly low for CNS tumour survivors. This study illustrates loss of working capability associated with pediatric cancer and treatment and long-term requirement of health insurance benefits.

Remediation of attention deficits in children: a focus on childhood cancer, traumatic brain injury and attention deficit disorder.

The purpose of this review is to examine the status of attention training in children. This body of literature is very small so the review examines available efficacy studies in three paediatric groups: children who have survived cancer affecting the central nervous system (CNS) or whose treatment has impacted the CNS, children with traumatic brain injury (TBI) and children with attention deficit disorder (ADD). Seven studies/case reports are reviewed. The results are encouraging, with six of seven describing some improvement on attention measures. An original case study is presented using Pay Attention! materials with a 6 year old survivor of acute lymphoblastic leukaemia (ALL). This represents only the third report of the use of attention training materials with a survivor of childhood cancer and the first case report of the use of these materials with a very young child (6 years of age).

School behaviour and health status after central nervous system tumours in childhood.

This study was designed to assess the overall morbidity burden of survival from central nervous system (CNS) tumours and its impact on return to a normal lifestyle. School behaviour and health status of 27 children after treatment for CNS tumours, of 25 of their school-aged siblings, plus age- and sex-matched controls is reported. Spinetta school behaviour, Lansky play-performance and Health Utilities Index (mark II and III) assessments have been made. Patients had reduced mobility and increased pain levels. They demonstrated a reluctance to participate in organized physical activities. Impaired cognition, emotion and self-esteem were reported. They worried more than controls but attended school willingly, interacted normally with their peers and viewed the future confidently. Their siblings were reluctant to express openly concern for others or feelings of joy. Teachers were reliable proxies for most attributes, notable exceptions being speech and emotion. This is the first study to have assessed the school behaviour of a cohort solely composed of survivors of childhood CNS tumours. The good social reintegration is reassuring and likely to reflect a high level of psychosocial support. However, the results presented identify these young people as a 'special educational needs' group as defined by the 1981 and 1993 Education Acts.

Functional outcome following rehabilitation of the cancer patient.

OBJECTIVE: To identify impairments resulting from cancer or its treatment in patients undergoing inpatient rehabilitation, to assess the extent of functional gains, and to determine if cancer type, ongoing radiation treatment, or the presence of metastatic disease influences functional improvement. DESIGN AND SETTING: A retrospective, case series of cancer patients undergoing inpatient rehabilitation at a free-standing, university-affiliated rehabilitation hospital. PARTICIPANTS: A referred sample of 159 patients admitted because of functional impairments resulting from cancer or its treatment during a 2-year time period. INTERVENTION: Comprehensive inpatient rehabilitation. MAIN OUTCOME MEASURE: Functional status as measured by the motor score of the Functional Independence Measure. RESULTS: Significant functional gains were made between admission (mean = 42.9) and discharge (mean = 56.0; p < .001), with all cancer subgroups making similar gains. The presence of metastatic disease did not influence functional outcome, and those patients receiving radiation actually made larger functional improvements (p = .025). CONCLUSION: Individuals impaired by cancer or its treatment benefit from inpatient rehabilitation. The presence of metastatic disease or ongoing radiation should not preclude participation.