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PURPOSE: Long-term musculoskeletal complications represent a growing burden for survivors of childhood acute lymphoblastic leukemia (cALL). This study aimed to describe physical impairments, activity limitations, and participation restrictions in a high-risk subgroup of cALL survivors of the PETALE cohort. METHODS: This cross-sectional study, using observational data from the PETALE cohort, included a subgroup of survivors who presented high-risk criteria for late effects. Outcomes measures consisted of hip magnetic resonance imaging, maximal isometric muscle strength (MIMS) or torque (MIMT), range of motion (ROM), Near Tandem Balance (NTB), 6-Minute Walk Test (6MWT), Five Time Sit-to-Stand Test (FTSST), and health-related quality of life. Descriptive statistics and regression analyses were performed. RESULTS: Survivors (n = 97, 24.2 ± 6.7 years old) showed limited grip strength, FTSST, and NTB performance compared to reference values (p < 0.001). Thirteen participants (14.6%, 18 hips) had hip osteonecrosis (ON) (53.8% male). Higher severity hip ON was found in female survivors (66.7% vs. 22.2%). Survivors with hip ON had reduced hip external rotation ROM compared to those without (p < 0.05). Relationships were found between MIMS and ROM outcomes (r = 0.32, p < 0.01) and with 6MWT (r = 0.39-0.41, p < 0.001). Our multiple linear regression model explained 27.6% of the variance of the 6MWT. CONCLUSIONS: Survivors in our subgroup had clinically significant physical impairments and activity limitations, and those with hip ON showed worst hip impairment outcomes. IMPLICATIONS FOR CANCER SURVIVORS: These findings emphasize the importance of long-term follow-up including physical therapy assessment to help early identification and management of physical impairments and activity limitations in survivors of cALL.
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A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with advanced cancer. We adopted a four-phase research plan: (1) to elaborate the Advance QoL questionnaire for youth (8-12 and 13-18 years old) with a team of young research partners; (2) to evaluate the understandability of these versions in a sample of 12 young patients from the target population using cognitive interviews; (3) to assess social validity in the same group using a questionnaire and the content validity index (CVI); and (4) to refine the questionnaires according to these results. Four major themes were identified: (1) issues affecting the understanding of the tool; (2) issues that did not affect the understanding of the tool; (3) modifications to improve the tool; and (4) positive features of the tool. Advance QoL was well received, and feedback was positive. Adjustments were made according to young people's comments and two self-reported versions are now available. It is essential to measure the key domains of QoL in advanced cancer. Advance QoL self-report versions will help target the specific needs of young people with this condition and their families.
Subject(s)
Neoplasms , Patient Reported Outcome Measures , Quality of Life , Humans , Quality of Life/psychology , Adolescent , Child , Neoplasms/psychology , Male , Female , Surveys and Questionnaires , Self ReportABSTRACT
Acute lymphoblastic leukemia (ALL) stands as the most prevalent form of pediatric cancer in North America, with a current five-year survival rate of 85%. While more children achieved ALL remission and transition into adulthood, the prevalence of long-term treatment-related effects, especially neurocognitive sequelae, remains significant. This study pursues two objectives. Firstly, it investigates if Magnetization Transfer Ratio (MTR), a method assessing myelin integrity, is sensitive to white matter (WM) microstructural changes in long-term ALL survivors and whether these relate to cognitive impairments. Secondly, it examines the dose-related effects of chemotherapy agents on the MTR and its relationship to other risk factors such as female sex, early age diagnosis, and cranial radiotherapy. Magnetization transfer imaging was utilized to assess WM integrity in 35 survivors at a mean of 18.9 years after the onset of ALL (range since diagnosis: 6.9-26.8). Additionally, 21 controls matched for age, sex, and education level, with no history of cancer, were included. MTR was extracted from both the entire brain's WM and the corpus callosum through semi-automated procedures. The results indicated lower MTR means in survivors, which is linked to cognitive function. Negative associations between MTR means and intrathecal agents' (MTX, cytarabine, and hydrocortisone) cumulative doses received were highlighted. This study offers valuable insights into the connections between myelin deterioration, cognitive impairment, and the implications of IT chemotherapy, enhancing our understanding of ALL survivorship dynamics. It underscores MTR's relevance in monitoring neurotoxicity during oncological drug follow-up examinations.
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PURPOSE: The use of trametinib in the treatment of pediatric low-grade gliomas (PLGG) and plexiform neurofibroma (PN) is being investigated in an ongoing multicenter phase II trial (NCT03363217). Preliminary data shows potential benefits with significant response in the majority of PLGG and PN and an overall good tolerance. Moreover, possible benefits of MEK inhibitor therapy on cognitive functioning in neurofibromatosis type 1 (NF1) were recently shown which supports the need for further evaluation. METHODS: Thirty-six patients with NF1 (age range 3-19 years) enrolled in the phase II study of trametinib underwent a neurocognitive assessment at inclusion and at completion of the 72-week treatment. Age-appropriate Wechsler Intelligence Scales and the Trail Making Test (for children over 8 years old) were administered at each assessment. Paired t-tests and Reliable Change Index (RCI) analyses were performed to investigate change in neurocognitive outcomes. Regression analyses were used to investigate the contribution of age and baseline score in the prediction of change. RESULTS: Stable performance on neurocognitive tests was revealed at a group-level using paired t-tests. Clinically significant improvements were however found on specific indexes of the Wechsler intelligence scales and Trail Making Test, using RCI analyses. No significant impact of age on cognitive change was evidenced. However, lower initial cognitive performance was associated with increased odds of presenting clinically significant improvements on neurocognitive outcomes. CONCLUSION: These preliminary results show a potential positive effect of trametinib on cognition in patients with NF1. We observed significant improvements in processing speed, visuo-motor and verbal abilities. This study demonstrates the importance of including neuropsychological evaluations into clinical trial when using MEK inhibitors for patients with NF1.
Subject(s)
Neurofibromatosis 1 , Neuropsychological Tests , Pyridones , Pyrimidinones , Humans , Pyridones/therapeutic use , Pyrimidinones/therapeutic use , Pyrimidinones/pharmacology , Pyrimidinones/administration & dosage , Male , Female , Adolescent , Child , Neurofibromatosis 1/drug therapy , Neurofibromatosis 1/complications , Neurofibromatosis 1/psychology , Young Adult , Child, Preschool , Glioma/drug therapy , Glioma/psychology , Glioma/complications , Brain Neoplasms/drug therapy , Brain Neoplasms/psychology , Brain Neoplasms/complications , Adult , Protein Kinase Inhibitors/therapeutic use , Antineoplastic Agents/adverse effectsABSTRACT
BACKGROUND: Pediatric brain tumor survivors (PBTS) are at risk of physical, cognitive, and psychosocial challenges related to their diagnosis and treatment. Routine follow-up care as adults is therefore essential to their long-term health and quality of life. In order to successfully navigate to adult healthcare, it is recommended that youth develop transition readiness skills. Existing transition readiness interventions often focus on disease management. However, PBTS are also at risk of social competence and cognitive functioning challenges. In this paper, we describe the protocol of this pilot study and the methodology that will be used for the evaluation of the feasibility, acceptability, and preliminary efficacy testing of the first targeted transition intervention workshops specifically designed to meet the needs of PBTS and their caregivers. METHODS: This study will use a mixed method to evaluate three 1 ½-h workshops targeted for dyads (N = 40) of PBTS (14 years or older) and their parents. Dyads will be recruited via a community pediatric cancer organization and the long-term follow-up clinic of a large pediatric hospital. Participants will complete an online survey which includes the Transition Readiness Assessment Questionnaire (TRAQ) before and after the workshops. Each workshop will cover a specific topic related to PBTS transition readiness: disease management, social competence, and cognitive functioning. Workshops will follow the same structure: topic presentation, discussion by a post-transfer survivor or parent, teaching two strategies, and workshop evaluation. Workshops will be co-led by healthcare specialists and patient partners. Feasibility and acceptability will be assessed via recruitment, attendance, retention, and Likert scales, and they will be analyzed by describing and comparing rates. Satisfaction will be measured using satisfaction surveys and audio-recorded focus groups. Qualitative data will be described through thematic content analysis. In order to test the preliminary efficacy of this study, we will compare transition readiness skills pre- and post-workshops using paired samples T test and ANCOVA to examine the impact of workshop on TRAQ skills. DISCUSSION: Results of the study will inform refinement and future broader implementation of targeted transition readiness workshops for the specific needs of pediatric brain tumor survivors.
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Objectives: To understand why some long-term childhood cancer survivors experience positive adjustment in the long run,[Q1] this study aimed to (1) explore associations between well-being, health status, social support, and emotion regulation (ER) strategies in a cohort of long-term childhood lymphoblastic leukemia (cALL) survivors, (2) identify the individual contribution of each ER strategy to well-being (3) and their interaction with social support. Methods: We used data from 92 participants from the PETALE cohort (51% female, aged 24 ± 7 years). Measures included well-being (WHO-5), health status (15D), social support (SSQ-6), cognitive reappraisal and expressive suppression (ERQ), and emotional processing and expression (EAC). We modeled the odds of high well-being adjusting for health status in logistic regressions and explored the moderating role of social support with bootstrap techniques. Independent of clinical history, high well-being was associated with better health status, higher social support, more frequent use of cognitive reappraisal and emotional processing. Results: We found a main contribution of emotional processing to well-being (OR = 2.12, 95% CI = 1.09-5.37). The interaction between low suppression and high social support was significant (OR = .40, 95% CI = .13-.79). Probabilities for high well-being were 96% when expressive suppression was low and social support was high. Results suggest approaching one's own emotions may contribute to well-being in long-term childhood cancer survivors. Clinical implications: Combining curbing emotional suppression with promoting supportive social environment could be a promising target for future supportive care interventions in survivors.
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BACKGROUND: An increased risk of neurocognitive deficits, anxiety, and depression has been reported in childhood cancer survivors. METHODS: We analyzed associations of neurocognitive deficits, as well as anxiety and depression, with common and rare genetic variants derived from whole-exome sequencing data of acute lymphoblastic leukemia (ALL) survivors from the PETALE cohort. In addition, significant associations were assessed using stratified and multivariable analyses. Next, top-ranking common associations were analyzed in an independent SJLIFE replication cohort of ALL survivors. RESULTS: Significant associations were identified in the entire discovery cohort (N = 229) between the AK8 gene and changes in neurocognitive function, whereas PTPRZ1, MUC16, TNRC6C-AS1 were associated with anxiety. Following stratification according to sex, the ZNF382 gene was linked to a neurocognitive deficit in males, whereas APOL2 and C6orf165 were associated with anxiety and EXO5 with depression. Following stratification according to prognostic risk groups, the modulatory effect of rare variants on depression was additionally found in the CYP2W1 and PCMTD1 genes. In the replication SJLIFE cohort (N = 688), the male-specific association in the ZNF382 gene was not significant; however, a P value<0.05 was observed when the entire SJLIFE cohort was analyzed. ZNF382 was significant in males in the combined cohorts as shown by meta-analyses as well as the depression-associated gene EXO5. CONCLUSIONS: Further research is needed to confirm whether the current findings, along with other known risk factors, may be valuable in identifying patients at increased risk of these long-term complications. IMPACT: Our results suggest that specific genes may be related to increased neuropsychological consequences.
Subject(s)
Depression , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Humans , Male , Depression/genetics , Exome , Survivors , Anxiety/genetics , Precursor Cell Lymphoblastic Leukemia-Lymphoma/genetics , Receptor-Like Protein Tyrosine Phosphatases, Class 5/geneticsABSTRACT
BACKGROUND: Transferring from paediatric to adult care can be challenging. Adolescents and young adults (AYAs) with chronic health conditions need to develop a specific set of skills to ensure lifelong medical follow-up due to the chronicity of their condition. The Transition Readiness Assessment Questionnaire-French version (TRAQ-FR) is a 19-item questionnaire measuring such skills. The aims of the study were to (1) describe participant characteristics and (2) identify constructs related to, and predictors of, having learned domain-specific transition readiness skills. METHODS: Participants included 216 AYAs aged 14-20 years (M = 15.93; SD = 1.35; 54.1% male) recruited from five outpatient clinics in a Canadian tertiary hospital. AYAs completed the TRAQ-FR, the Pediatric Quality of Life Inventory 4.0 (PedsQL) and a sociodemographic questionnaire. Descriptive, bivariate and binary logistic regression analyses were conducted. RESULTS: Overall, participants reported significantly higher scores on the Talking with Providers, Managing Daily Activities and Managing Medications subscales than on the Appointment Keeping and Tracking Health Issues subscales (F[41075] = 168.970, p < .001). At the item level, median scores (on a 5-point Likert scale) suggest that AYAs had begun practising five of the 19 skills (median scores ≥4; 'Yes, I have started doing this'), while a median score of 1 ('No, I don't know how') was found for one item ('Do you get financial help with school or work?'). At the subscale level, TRAQ-FR skills and skill gaps were related to AYAs' age, sex and PedsQL scores (ps < .05). CONCLUSION: Older and female AYAs were more likely to have begun practising specific TRAQ-FR subscale skills. Better psychosocial functioning was also related to having learned specific transition readiness skills. AYAs show several gaps in transition readiness. Targeted intervention in transition readiness skill development could take into account AYAs' age, sex and psychosocial functioning for a successful transfer to adult care.
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Transition to Adult Care , Humans , Male , Female , Young Adult , Adolescent , Child , Quality of Life , Canada , Surveys and Questionnaires , Chronic DiseaseABSTRACT
INTRODUCTION: Parents of children with cancer can experience increased emotional distress. This study aimed to assess the feasibility (i.e., reach, treatment fidelity, and social validity) of Taking Back Control Together (TBCT). METHODS: We assessed reach with the enrollment and dropout ratios. We assessed treatment fidelity using items from existing programs, controlling for the reliability of the items. For social validity, we used an adapted version of the Treatment Evaluation Inventory and compared means with theoretical cut-points. RESULTS: 42 participants enrolled in the intervention. The enrollment and dropout ratios were 39% and 38%, respectively. Treatment fidelity was 77.3-84.3% (95%CI 75.3-86%). Acceptability (M = 90%), satisfaction (M = 87%), and relevance (M = 82%) were significantly positive. CONCLUSION: This study suggests that certain elements of TBCT need to be reassessed before the intervention is pilot tested. Although reach was likely impacted by the COVID-19 pandemic, it could be improved with some modifications to the intervention.
Subject(s)
Feasibility Studies , Neoplasms , Parents , Humans , Female , Male , Neoplasms/psychology , Neoplasms/therapy , Child , Parents/psychology , Adult , COVID-19/psychology , Middle Aged , Psychological Distress , AdolescentABSTRACT
Pediatric Brain Tumor Survivors (PBTS) often experience social, academic and employment difficulties during aftercare. Despite their needs, they often do not use the services available to them. Following a previous qualitative study, we formulated solutions to help support PBTS return to daily activities after treatment completion. The present study aims to confirm and prioritize these solutions with a larger sample. We used a mixed-methods survey with 68 participants (43 survivors, 25 parents, PBTS' age: 15-39 years). Firstly, we collected information about health condition, and school/work experience in aftercare. Then, we asked participants to prioritize the previously identified solutions using Likert scales and open-ended questions. We used descriptive and inferential statistics to analyze data, and qualitative information to support participants' responses. Participants prioritized the need for evaluation, counseling, and follow-up by health professionals to better understand their post-treatment needs, obtain help to access adapted services, and receive information about resources at school/work. Responses to open-ended questions highlighted major challenges regarding the implementation of professionals' recommendations at school/work and the need for timely interventions. These results will help refine solutions for PBTS and provide key elements for future implementation. Translating these priorities into action will need further work involving professionals and decision makers.
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Brain Neoplasms , Child , Humans , Adolescent , Young Adult , Adult , Brain Neoplasms/therapy , Employment , Health Personnel , Parents , SurvivorsABSTRACT
Late effects such as neurocognitive issues and fatigue have been reported in childhood acute lymphoblastic leukemia (cALL) survivors. Yet, their association is often poorly understood. In this study, we wished to (1) describe neurocognitive difficulties and fatigue in a well-characterized cohort of long-term cALL survivors and (2) explore the risk of having neurocognitive deficits as a function of fatigue. Childhood ALL survivors (N = 285) from three Canadian treatment centers completed the DIVERGT battery of cognitive tests and the PedsQL Multidimensional Fatigue Scale. We performed logistic regressions to assess the risk of a survivor to show cognitive deficits (<2.0 SD) depending on their fatigue levels. At least one cognitive deficit on the DIVERGT was present in 31% of participants. Domains primarily affected were working memory, fine motor skills, and verbal fluency. Sleep/rest fatigue in youths was higher than norms (d = 0.35). The risk for cognitive deficits increased independently with levels of fatigue in the domains of cognitive speed and flexibility, working memory, and verbal fluency. For every 10-point increase on general or sleep/rest fatigue on the 0-100 scale, there was a median +23-35% risk of showing a deficit among the 7 tasks significantly associated with fatigue. Fatigue may constitute a complementary target when searching to mitigate cognitive issues in this population.
Subject(s)
Cognitive Dysfunction , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Adolescent , Humans , Canada/epidemiology , Cognitive Dysfunction/etiology , Cognitive Dysfunction/complications , Survivors , Fatigue/etiology , Fatigue/complications , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapyABSTRACT
BACKGROUND: Long-term childhood cancer survivors (CCS) are at high risk of having dyslipidemia including low high density lipoprotein cholesterol (HDL-C). However, little is known about the prevalence of low HDL-C and the impact of therapy exposure on HDL composition early after treatment is terminated. METHODS: This associative study included 50 children and adolescents who had completed their cancer treatments (< 4 years). Clinical characteristics (demographic, diagnosis, treatment, anthropometric parameters), fasting plasma lipids, apoliporoteins (Apo) A-I and composition of HDL fractions (HDL2 and HDL3) were assessed. Data were stratified according to the presence of dyslipidemia and median doses of therapeutic agents and compared using Fisher exact or Mann-Whitney tests. Univariate binary logistic regression analyses were carried out to evaluate the associations between the clinical and biochemical characteristics and having low HDL-C. Composition of HDL2 and HDL3 particles was assessed in a sub-group of 15 patients and compared to 15 age- and sex-matched healthy controls using Wilcoxon paired test. RESULTS: Of the 50 pediatric cancer patients included in this study (mean age: 11.30 ± 0.72 y; mean time since end of treatment: 1.47 ± 0.12 y; male: 38%), 8 had low HDL-C (16%), all of which were adolescent at diagnosis. Higher doses of doxorubicin were associated with lower HDL-C and Apo A-I levels. In hypertriglyceridemic patients and compared to normolipidemics, triglycerides (TG) content was greater in HDL2 and HDL3 fractions whereas esterified cholesterol (EC) content was lower in HDL2. Enrich TG content of HDL3 and lower EC of HDL2 was found in patients exposed to ≥ 90 mg/m2 doxorubicin. Factors positively associated with the risk of having low HDL-C were age, being overweight or obese and exposure to doxorubicin ≥ 90 mg/m2. Compared to healthy controls, a sub-group of 15 patients showed higher TG and free cholesterol (FC) content of HDL2 and HDL3 and lower EC content in HDL3. CONCLUSIONS: Overall, we found abnormalities in HDL-C and Apo A-I levels and in HDL composition early after pediatric cancer treatment that are influenced by age, overweight or obesity status and exposure to doxorubicin.
Subject(s)
Lipoproteins, HDL , Neoplasms , Adolescent , Humans , Male , Child , Apolipoprotein A-I , Overweight , Cholesterol , Triglycerides , Cholesterol, HDL , Cholesterol Esters , Doxorubicin/therapeutic use , Lipoproteins, HDL3 , Neoplasms/drug therapyABSTRACT
OBJECTIVES: Improving medical students' wellbeing and empowerment through curricular activities is a topic of interest worldwide. Mindfulness-based interventions (MBIs) are increasingly implemented in medical education often as part of elective courses. To better understand training outcomes and adjust curriculum to students' needs, we will explore why will medical students participate in meditation-based education? METHODS: We analyzed 29 transcripts from the first session of an 8-week MBSR program offered to medical students in French. Transcripts were coded and analyzed using a qualitative content thematic analysis and the constant comparison method. RESULTS: Analyses resulted in three themes describing students' motivation: (1) Medical education and the physician's role, i.e. improving interpersonal skills, acquiring skills oriented toward a more integrative medicine, being more productive in a highly competitive context. (2) Caring for my health i.e. aiming at stress reduction, emotion regulation, and improving self-compassion. (3) A quest for meaning, i.e. optimizing meaning of care, and meaning of life. CONCLUSION: The results highlight the congruence between the perceived motivations and the evidence on the effect of mindfulness on self-care, the development of humanistic medical skills, and the meaning of care. Some findings raise the issue of the limits of using mindfulness to enhance one's productivity. Notably, participants articulated the need for self-care as in mindfulness training, with the ability to care for others.
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Education, Medical , Mindfulness , Students, Medical , Humans , Students, Medical/psychology , Motivation , Mindfulness/education , Educational StatusABSTRACT
Pediatric cancer survivors may experience cardiometabolic sequelae over the course of their lives as a result of the treatments they have received. While nutrition consists of an actionable target for cardiometabolic health, few nutritional interventions have been documented in this population. This study assessed the changes in diet during a one-year nutritional intervention for children and adolescents undergoing cancer treatments and the participants' anthropometric and cardiometabolic profiles. A total of 36 children and adolescents (mean age: 7.9 years, 52.8% male) newly diagnosed with cancer (50% leukemia) and their parents underwent a one-year individualized nutrition intervention. The mean number of follow-up visits with the dietitian during the intervention was 4.72 ± 1.06. Between the initial and one-year assessments, there was an improvement in diet quality reflected by the Diet Quality Index (5.22 ± 9.95, p = 0.003). Similarly, the proportion of participants with moderate and good adherence (vs. low adherence) to the Healthy Diet Index score almost tripled after one year of intervention (14% vs. 39%, p = 0.012). In parallel, there was an increase in the mean z-scores for weight (0.29 ± 0.70, p = 0.019) and BMI (0.50 ± 0.88, p = 0.002), and in the mean levels of HDL-C (0.27 ± 0.37 mmol/L, p = 0.002) and 25-hydroxy vitamin D (14.5 ± 28.1 mmol/L, p = 0.03). Overall, this study supports that a one-year nutritional intervention deployed early after a pediatric cancer diagnosis is associated with an improvement in the diets of children and adolescents.
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BACKGROUND: Asthma is one of the most prevalent chronic diseases of childhood and disproportionately affects children with lower socioeconomic status. Controller medications such as inhaled corticosteroids significantly reduce asthma exacerbations and improve symptoms. However, a large proportion of children still have poor asthma control, in part owing to suboptimal adherence. Financial barriers contribute to hindering adherence, as do behavioral factors related to low income. For example, unmet social needs for food, lodging, and childcare may create stress and worry in parents, negatively influencing medication adherence. These needs are also cognitively taxing and force families to focus on immediate needs, leading to scarcity and heightening future discounting; thus, there is the tendency to attribute greater value to the present than to the future in making decisions. OBJECTIVE: In this project, we will investigate the relationship between unmet social needs, scarcity, and future discounting as well as their predictive power over time on medication adherence in children with asthma. METHODS: This 12-month prospective observational cohort study will recruit 200 families of children aged 2 to 17 years at the Asthma Clinic of the Centre Hospitalier Universitaire Sainte-Justine, a tertiary care pediatric hospital in Montreal, Canada. The primary outcome will be adherence to controller medication, measured using the proportion of prescribed days covered during follow-up. Exploratory outcomes will include health care use. The main independent variables will be unmet social needs, scarcity, and future discounting, measured using validated instruments. These variables will be measured at recruitment as well as at 6- and 12-month follow-ups. Covariates will include sociodemographics, disease and treatment characteristics, and parental stress. Primary analysis will compare adherence to controller medication, measured using the proportion of prescribed days covered, between families with versus those without unmet social needs during the study period using multivariate linear regression. RESULTS: The research activities of this study began in December 2021. Participant enrollment and data collection began in August 2022 and are expected to continue until September 2024. CONCLUSIONS: This project will allow the documentation of the impact of unmet social needs, scarcity, and future discounting on adherence in children with asthma using robust metrics of adherence and validated measures of scarcity and future discounting. If the relationship between unmet social needs, behavioral factors, and adherence is supported by our findings, this will suggest the potential for novel targets for integrated social care interventions to improve adherence to controller medication and reduce risk across the life course for vulnerable children with asthma. TRIAL REGISTRATION: ClinicalTrials.gov NCT05278000; https://clinicaltrials.gov/ct2/show/NCT05278000. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/37318.
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CONTEXT: There is no universal definition of cancer-related fatigue (CRF) specific to childhood cancer survivors, despite this population facing unique long-term side effects from their cancer. We aimed to synthesize and combine existing definitions of CRF specific to this context to inform on the necessity of a panel of experts to formulate a new definition of CRF for childhood cancer survivors. METHODS: The literature search was performed in various databases. Titles, abstracts, and keywords were screened by two researchers to confirm eligibility. The data extraction process was performed by two researchers. Our search was conducted in various databases. RESULTS: Thirty articles were included in the qualitative analysis. Two coders reached consensus on 14 codes. The thematization process produced 4 themes: frequency, context, attributes, and consequences of CRF. These themes were used to synthesize a definition of CRF, as follows: "In childhood cancer survivors, cancer-related fatigue is a common late effect of cancer and cancer treatments. It is characterized by a subjective, persistent, and multidimensional experience that differs from normal fatigue in the physical, emotional, and/or cognitive spheres. Cancer-related fatigue may have a variety of negative consequences including a reduced quality of life and level of functioning, a lack of vigor, work difficulties, relationship issues, and emotional distress." CONCLUSION: A definition of CRF applicable to childhood cancer survivors is timely to organize research efforts and design appropriate interventions. The proposed definition is a first step towards the formulation of a new definition of CRF specific to childhood cancer survivors by experts.
Subject(s)
Cancer Survivors , Neoplasms , Humans , Child , Cancer Survivors/psychology , Neoplasms/complications , Neoplasms/psychology , Quality of Life/psychology , Fatigue/therapy , EmotionsABSTRACT
INTRODUCTION: Parents of children with cancer face psychological challenges that can result in significant distress. It has been found that problem-solving (PS) could mitigate emotional distress (ED) in this population, but mechanisms of this relation are poorly understood. This study aimed to assess whether there is a link between PS and ED through perceived control and self-efficacy. METHODS: We included 119 parents (67 mothers, 52 fathers, including 50 couples) whose child was diagnosed with cancer. We evaluated whether PS was associated with ED through perceived control and self-efficacy in couples of parents. RESULTS: We found no direct association between PS and ED (ß = -0.01, p = 0.92). Our results indicated a significant indirect effect between ED and PS with perceived control as the intermediary variable (ß = -0.24, p < 0.001, 95% CI [-0.41, -0.11]). However, there was no indirect association between ED and PS with self-efficacy as the intermediary variable (ß = -0.04, p = 0.26, 95% CI [-0.11, 0.09]). The effect size was large in magnitude (R2 = 0.59 for ED). CONCLUSION: The mitigating role of PS on ED is better explained by an enhanced experience of control than by improved self-efficacy. Future interventions should directly target the action mechanism behind PS and ED in both mothers and fathers by targeting their perceived control.
Subject(s)
Neoplasms , Psychological Distress , Female , Child , Humans , Self Efficacy , Stress, Psychological/psychology , Parents/psychology , Neoplasms/psychologyABSTRACT
Introduction: Studies in pediatric oncology have shown that hypnosis effectively reduces patients' pain and distress during painful procedures. This remains underutilized in the healthcare system due to the staff cost and availability of hypnotherapists. To develop the use of hypnosis-derived communication, we aimed to train nurses to use hypnosis-derived communication while they perform painful procedures. Objectives: This study aimed to (1) develop a brief training in hypnosis-derived communication for pediatric nurses named Rel@x, (2) pretest the training with experienced pediatric oncology nurses, and (3) refine the training based on nurses' suggestions. Methods: The Rel@x training consists of two 4-h sessions: one related to relational aspects and another one presenting one of two selected hypnotic communication techniques ("pleasant place" or "magic glove"). Rel@x makes use of manuals, cue card reminders, visual aids, videos, and an e-learning platform. To refine Rel@x, a complete training cycle was conducted with seven female pediatric oncology nurses. A mixed method study with an evaluation questionnaire and a post-training focus group interview was conducted. Results: Quantitative data showed that nurses overall positively rated the training program: relevance and acceptability (median average of 5.4/6); use of hypnotic communication (median average of 5.2/6); expected effects (median average of 5.4/6); program implementation (5.6/6). Two general themes emerged from the qualitative data: perceptions of hypnotic communication and the evaluation of the Rel@x training program. Based on nurses' suggestions, Rel@x was refined by adding more practical components, more time for practice, more time between the two sessions and additional tools (cue card reminders, keywords, virtual e-learning recap module). Conclusion and clinical implications: The use of hypnosis-derived communication during painful procedures and the Rel@x training were viewed favorably amongst pediatric nurses. Rel@x offers a complete training in hypnosis-derived communication for pediatric nurses. This training fosters the optimal use of hypnosis-derived communication during care and may significantly reduce children's procedural pain and distress.
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Treatments for adolescent cancer can cause debilitating side effects in the short- and long-term such as nausea and malnutrition but also cardiometabolic disturbances. Although the risk for cardiometabolic complications is greater for adolescents with cancer than younger ones, adolescents typically respond poorly to family-oriented health promotion programs. This study aims to assess the needs, barriers and facilitators to healthy lifestyle promotion interventions for adolescents with cancer and how to best adapt these interventions for them. Interviews were held with adolescents treated for cancer (n = 9) and parents (n = 6), focus groups were conducted with stakeholders working in oncology (n = 12) and self-report questionnaires were sent to stakeholders involved in a health promotion intervention (n = 6). At the time of interview, mean age of adolescent participants (40% female) was 17.0 ± 1.9 years (mean age at diagnosis: 14.6 ± 1.6 years). Verbatim and responses to questionnaires were coded and analyzed using qualitative methods. Stakeholder stated that adolescents with cancer need to access activities adapted to their age, to communicate with peers going through a similar experience, and to preserve their schooling and friendships. Barriers to intervention reported by adolescents, parents and stakeholders include lack of motivation, schedule conflicts, fatigue and treatment side effects. Some of the barriers mentioned by adolescents and parents include pain, post-surgery problems, school, physical deconditioning, and lack of time. Facilitators mentioned by adolescents and parents comprise trust in stakeholders' expertise, personalized approaches, scheduling flexibility. Stakeholders recommended to build trust in the relationship, favoring non-moralizing teachings, adapt interventions to adolescents' limited attention span and avoiding the use of long-term health benefits as a motivator.
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OBJECTIVES: We aimed to identify contributors to cancer-related fatigue (CRF), explore non-pharmacological interventions addressing CRF, and highlight which contributors were targeted by these interventions in childhood cancer survivors. METHODS: We performed a search in various databases and used the PRISMA-ScR checklist. Findings were synthesized in various different tables and figures in accordance with our objectives. RESULTS: We included 49 articles in this systematic scoping review. We identified 59 significant contributors. Depression and physical activity level were some of the most studied significant contributors. Ten interventional studies were identified (e.g., yoga, physical activity intervention) that addressed 6 contributors (e.g., physical activity level). DISCUSSION: This review is the first to describe and relate contributors and non-pharmacological interventions targeting CRF in childhood cancer survivors. Important clinical implications could be derived from the variety of factors explaining CRF and how it is currently addressed.