Feasibility Study of Taking Back Control Together, an Intervention to Support Parents of Children with Cancer.

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.

Contribution of Fatigue to Cognitive Dysfunction in Childhood Acute Lymphoblastic Leukemia Survivors.

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.

Screening for distress in pediatric cancer survivors: A systematic comparison of one-step and two-step strategies to minimize detection errors.

BACKGROUND: Childhood cancer survivors should be routinely screened for psychological distress. However, existing screening tools promoted by cancer care institutions, such as the Distress Thermometer (DT) generate high rates of errors. The aim of this study is to help refining strategies of screening psychological distress in this population by exploring two-step methods combining the DT on step #1 with one question on step #2. PROCEDURE: Data from 255 survivors of childhood acute lymphoblastic leukemia aged 13-40 years were analyzed (38% 13-18 years, 62% 19+ years, 53% females). We used the DT on step #1 and the individual emotion items from the Pediatric Quality of Life Questionnaire (PedsQL) on step #2, to detect distress, depression and anxiety as measured by standard instruments. We compared sensitivity, specificity, negative and positive predictive values, Youden index, and clinical utility indices, in newly developed two-step strategies. RESULTS: The best two-step strategies to screen anxious-depressive distress were DT ≥ 2 on step #1, with the item of Sadness on step #2, and DT ≥ 2 combined with the item of Concerns. Two-step strategies outperformed the DT alone on the correct identification of distressed survivors. However, two-step strategies did not outperform the DT used alone on the correct detection of no distressed survivors. Results were similar when predicting depression or anxiety alone. CONCLUSION: Completing the DT with one single question on emotions from the PedsQL may minimize the number of participants falsely identified as distressed, which could be particularly pertinent in resource-limited clinics.

Validity and reliability of the French version of the Pediatric Quality of Life Inventory™ brain tumor module.

INTRODUCTION: Assessing health-related quality of life (HRQoL) is an increasingly important aspect of standard care in pediatric oncology. Currently, there is a gap in the availability of French questionnaires to assess the quality of life of French-speaking pediatric brain tumor (PBT) patients, which has important implications in the care of this population. The first aim of this study was to translate the original English Pediatric Quality of Life Inventory™ (PedsQL) brain tumor module version into French. The second aim was to describe the stability, repeatability and convergent validity of the French PedsQL brain tumor module. METHODS: A total of 61 PBT patients were included in this study. Among them, 15 children and 20 parents participated in the translation process. As part of the validation study, 48 children and 48 parents answered the PedsQL brain tumor module twice, and the PedsQL generic core scales and the patient-reported outcomes measurement information system (PROMIS-37 pediatric profile v2.0) questionnaire were administered once to the participants. The mean age of the 25 boys and 23 girls was 8.3 ± 4.8 years. For temporal stability, we used intraclass correlation coefficients (ICCs), for repeatability, we used the Bland and Altman method to assess the accuracy at a 1-week interval, and we used Pearson's correlation coefficients for convergent validity between the PedsQL brain tumor module, PedsQL general module and the PROMIS. RESULTS: Temporal stability for the parent proxy-reports (average ICC = 0.98) and the child self-reports (average ICC = 0.98) were excellent. There was a high absolute stability over a 1-week interval for the parent proxy-reports (ICC > 0.96) and child self-reports (ICC > 0.96). Convergent validity between parent proxy-reports and child self-reports was supported by positive correlations for five subscales. Children reported higher scores in cognitive problems and the movement and balance parameters than their parents and reported lower scores on the worry parameter than their parents. CONCLUSION: The strong psychometric properties of the French version of the PedsQL brain tumor module indicate that it is a validate and reliable questionnaire to measure HRQoL in PBT patients. The availability of a French version of the PedsQL brain tumor module supports the wider dissemination of the assessment of HRQOL in PBT patients.

Inconsistencies between measures of cognitive dysfunction in childhood acute lymphoblastic leukemia survivors: Description and understanding.

OBJECTIVES: The frequency of cognitive difficulties in childhood cancer survivors varies according to the measurement strategy. The goal of this research is to (a) describe agreements and differences between measures of working memory and attention (b) identify contributors of these differences, such as emotional distress, affects, and fatigue. METHODS: We used data available for 138 adults successfully treated for childhood acute lymphoblastic leukemia (ALL) (PETALE cohort). Working memory and attention were assessed using subtests from the WAIS-IV and self-reported questionnaires (BRIEF-SR and CAARS-S:L). Potential contributors included emotional distress, anxiety, depression (BSI-18), affects (PANAS), and fatigue (PedsQL-MFS). We explored measurement agreements and differences using diagnostic indices and multivariate regression models. RESULTS: The frequencies of working memory and attention deficits were higher when using cognitive tests (15%-21%) than with self-reports (10%-11%). Self-reported questionnaires showed high specificity (median 0.87) and low sensitivity (median 0.10), suggesting they did not reliably identify positive cases on cognitive tests. We identified negative affectivity as a possible contributor to inconsistencies between self-report and test results. CONCLUSIONS: When measuring working memory and attention in childhood ALL survivors, cognitive test results and self-reports should not be considered equivalent. At best, self-report may be used for screening (high specificity), but not to assess prevalence in large samples. Self-reported difficulties are also probably influenced by the negative mood in this population.

Psychosocial Intervention Programs for Parents of Children with Cancer: A Systematic Review and Critical Comparison of Programs' Models and Development.

Intervention programs have been developed to help parents cope with their child's cancer. Despite some studies reporting a high level of evidence, it is unclear how these programs build on each other. Appraising models of change is critical to advance scientific knowledge and provide evidence-based interventions. This review aims to identify existing programs, explicitly formulate their underlying models, evaluate how they translate into concrete activities, as well as identify and discuss their development process. Eleven programs based on models of change from cognitive-behavioral, systemic and counselling theories were identified. Many models included a sound theoretical framework, targeted outcomes, as well as implementation strategies. In most cases, preliminary development studies were conducted, but details were rarely provided on how development stages informed the redesign of intervention programs. Acceptability and treatment fidelity were not available for one-third of the programs. Future reports should document the development and design redesign stages prior to conducting efficacy trials, as this step would provide crucial details to critically appraise programs.

Could we use parent report as a valid proxy of child report on anxiety, depression, and distress? A systematic investigation of father-mother-child triads in children successfully treated for leukemia.

BACKGROUND: Systematic assessment of emotional distress is recommended in after care. Yet, it is unclear if parent report may be used as a proxy of child report. The aim of this study was to assess agreements and differences and explore possible moderators of disagreement between child and parent ratings. METHODS: Sixty-two young survivors treated for acute lymphoblastic leukemia (9-18 years) and both parents responded to the Beck Youth Inventory (anxiety and depression) and the distress rating scale on the child's status. Parents completed the Brief Symptom Inventory-18 on their own psychological status. Systematic analyses of agreement and differences were performed. RESULTS: Mother-child and father-child agreements were fair on anxiety, depression, and distress (median intraclass correlation coefficient = 0.37). Differences between parents and children were medium sized (median d = 0.55) with parents giving higher scores than their children on anxiety, depression, and distress. Mothers reported distress more frequently than fathers (39 vs. 17%) when children reported none. The child being female and lower parental income were associated with lower agreement in fathers when rating child distress. Higher levels of parental psychological symptoms were consistently associated with lower agreement. CONCLUSIONS: Parent-child differences when rating adolescent survivors' difficulties may be more important than previously thought. Parent report probably cannot be considered as a valid proxy of older child report on such internalized domains as anxiety, depression, or distress in the after-care clinic. Parents' report is also likely to be influenced by their own mood, a factor that should be corrected for when using their report.

Psychological risk in long-term survivors of childhood acute lymphoblastic leukemia and its association with functional health status: A PETALE cohort study.

BACKGROUND: Recent research has suggested that long-term pediatric cancer survivors were at risk of important physical and psychological morbidities. To date, we do not know to what extent functional health status contributes to psychological risk and which domains are most important. The aim of this study was to systematically explore which functional domain could explain anxiety, depression, and distress symptoms. PROCEDURE: We used data available for 105 adolescents and 182 adults successfully treated for childhood acute lymphoblastic leukemia at two Canadian sites part of the PETALE cohort. Participants were ≥5 years postdiagnosis, aged 22 ± 6 years, 52% female, and 49% acute lymphoblastic leukemia high-risk status. The contribution of health functional status (15D/16D questionnaires) to self-reported anxiety, depression, and distress (Beck scales and distress thermometer) was evaluated using adjusted logistic regression models. RESULTS: Prevalence rates found for mild-severe anxiety, depression, and distress were 14%, 21%, and 30% among adolescents and 27%, 20%, and 19% among adults. Frequent health domains associated with psychological risk were sleeping and breathing in adolescents, and vitality/fatigue, discomfort/symptoms, mental function, and sleeping in adults. Mental function was systematically associated with psychological risk across age groups (median OR = 10.00, 95% CI 3.01-33.71). Exploratory mediation bootstrapping analyses suggested that the effect on psychological risk of overall health status and mental function problems was partly explained by social/work/school functioning. CONCLUSION: The results identified important functional health domains that could be targeted for interventions preventing psychological risk: vitality/fatigue, discomfort/symptoms, sleeping, and mental function issues. Health domains probably affect mood partly by limiting social/work/school functioning.

Quality of Life, Treatment Beliefs, and Treatment Satisfaction in Children Treated for Primary Immunodeficiency with SCIg.

Despite the development of subcutaneous treatment, children and adolescents with primary immunodeficiency (PID) are vulnerable to a lower quality of life (QoL) than non-clinical participants. Comparisons have been offered in rare reports with limited sample sizes. No description is available of treatment beliefs and treatment satisfaction with standard tools. The objective of this study was to describe a large sample of patients with pediatric PID on QoL, treatment beliefs and satisfaction, and identify perceived benefits and issues of treatment both in children and parents. A mail-back survey was conducted in 60 patients with PID treated with subcutaneous Ig and their parents from a clinic in Montreal (QC, Canada). We used the standardized tools to assess for QoL levels, beliefs of necessity and concerns with treatment, and dimensions of satisfaction. We collected and coded perceived benefits and issues through open-ended questions. We found lower QoL in children with PID than in healthy non-clinical participants (median d = 0.40) and similar QoL levels to children with cancer (median d = 0.12). Participants considered their treatment as less necessary and able to control the illness and less convenient than patients with other conditions. Children were more prone to consider the treatment as convenient (69 vs. 47% p = .028) but reported more discomfort (24 vs. 10% p = .043) than parents. Results suggest a lower-than-expected QoL in pediatric PID. Aspects of the illness and treatment are probably unclear to patients and their families, as necessity beliefs were lower than expected. Educational strategies should be developed and assessed to address this issue.

Full and Partial Facial Affect Recognition in Pediatric Brain Tumour Survivors and Typically Developing Children Following COVID-19 Pandemic.

Affect recognition has emerged as a potential mechanism underlying the social competence challenges experienced by pediatric brain tumour survivors (PBTSs). However, many social interactions were altered during the pandemic, with the widespread use of masking potentially impacting affect recognition abilities. Here, we examine affect recognition in PBTSs and typically developing youth (TD) after the onset of the global pandemic. Twenty-three PBTSs and 24 TD between 8 and 16 years old were recruited and completed two performance-based affect recognition tasks (full and partial facial features) and a self-reported questionnaire on mask exposure in their social interactions. Their parents completed parent proxy questionnaires on their child's social adjustment and sociodemographics. The scores between the PBTSs and TD did not differ significantly in full (t(45) = 1.33, p = 0.19, d = 0.39, 95% CI [-0.69, 3.40]) or partial (t(37.36) = 1.56, p = 0.13, d = 0.46, 95% CI [-0.47, 3.60]) affect recognition, suggesting similar affect recognition between the two groups. These skills were also not significantly correlated with social adjustment or mask exposure (p > 0.05). However, the combined sample had significantly better scores in affect recognition when exposed to partial facial cues versus full. Additionally, participants obtained lower scores on a measure of full facial affect recognition and higher scores on a measure of partial affect recognition compared to pre-pandemic data. The pandemic may have influenced affect recognition across youth, underscoring the importance of further research into its lasting impact on the social competence of youth.

Contributing factors to well-being in a sample of long-term survivors of childhood acute lymphoblastic leukemia: the role of social support in emotional regulation.

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.

Prioritizing Solutions and Improving Resources among Young Pediatric Brain Tumor Survivors: Results of an Online Survey.

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.

Development and refinement of Rel@x:A training in hypnosis-derived communication for pediatric nurses to prevent procedural pain.

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.

French-language adaptation of the 16D and 17D Quality of Life measures and score description in two Canadian pediatric samples.

PURPOSE: The Health state descriptive system includes standardized self-administered instruments for measuring Health-Related Quality of Life (HRQoL) respectively among adolescents, and children. The objectives of the current study were: (1) to translate and adapt the pediatric-adolescent version 16D and 17D from English into French (Canada), (2) to demonstrate their feasibility in pediatric conditions. METHODS: The translation methodology combined forward and back translations, and cognitive debriefing with eight adolescents and eight children. Four bilingual translators were involved in the process. We administered the translated versions to two clinical samples, being treated for Primary immunodeficiency (PID, n = 48, aged 14.1 years, 20 girls), and having recovered from pediatric Acute Lymphoblastic Leukemia (ALL, n = 153, aged 14.7 years, 77 girls). RESULTS: Cognitive debriefing indicated that that the instructions, items, and response options were clear, easy to understand, and easy to answer. Adjustments were made for clarity. Translated versions were highly usable (measurement completion >90%). HRQoL levels were high for both samples (range 0.85-0.96). Participants reported lower levels if they were adolescents, particularly if they were girls. Older boys with PID reported a lower HRQoL than their counterparts with a history of ALL. PID and ALL patients mainly reported issues with discomfort and pain, concentration/learning, physical appearance, and psychological distress and sleeping, although to a different degree. CONCLUSION: The French-language versions of the 16D and 17D are easy to administer and may be used to identify problematic domains. Greater availability of translated versions of short evaluation tools may facilitate broader uptake of screening practices in pediatric care.

Contributing Factors of Unmet Needs Among Young Adult Survivors of Childhood Acute Lymphoblastic Leukemia with Comorbidities.

Purpose: This study aimed to: (1) describe the domains and levels of unmet needs of young adult survivors of childhood acute lymphoblastic leukemia (cALL) with comorbidities, and (2) to explore the factors associated with higher levels of unmet needs. Unmet need was considered as supportive care needs not met. Methods: The most vulnerable cALL survivors from the PETALE study cohort completed the Short-Form Survivor Unmet Needs Survey, the Brief Pain Inventory and the 15D instrument of health-related quality of life. Demographic and clinical information, including comorbidities, were obtained from medical records or self-reporting. The participants' needs and contributing factors to their needs were evaluated using nonparametric tests. Results: Of the 72 participants, 9 (13%) reported moderate/high levels of overall unmet needs. "Worry about earning money" (56%) and "Dealing with feeling tired" (51%) were the most frequent unmet needs (all levels combined). The factors associated significantly with any domain of unmet needs were: having a comorbidity, reporting altered functional health status, high ALL risk status, pain, age (<26 years), and having previously received psychological support. Conclusion: A minority of young adult survivors of cALL with comorbidities interviewed reported moderate/high levels of unmet needs. However, financial concerns and emotional health and relationship are the two domains of greatest need. Survivors with altered health condition are most at risk of experiencing moderate/high levels of unmet needs. If confirmed in larger samples, interventions should target modifiable contributors of unmet needs such as physical health and comfort, fatigue, and emotional health.

Changes in hair cortisol and self-reported stress measures following mindfulness-based stress reduction (MBSR): A proof-of-concept study in pediatric hematology-oncology professionals.

BACKGROUND AND PURPOSE: Little data is available on the effect of mindfulness amongst pediatric hematology-oncology professionals. The purpose was to further document change in biological and psychological stress following a mindfulness-based stress reduction (MBSR) program. MATERIALS AND METHODS: We led two pre-post interventional studies (n = 12 and n = 25) and measured changes on hair cortisol concentrations, perceived stress, psychological distress and burnout. RESULTS: Professionals did not change on biological stress (d = 0.04), but improved on self-reported measures (median d = 0.58). Effects were maintained over 3 months for psychological distress, anxiety, depression, and burnout (median d = 0.66). Effects were larger if trainees participated to the retreat and if they reported higher baseline perceived stress. CONCLUSION: In pediatric hematology-oncology professionals, an MBSR program was related with improvements in self-reported stress over 3 months. Components of the program and characteristics of trainees may influence the impact of MBSR.

Definition and improvement of the concept and tools of a psychosocial intervention program for parents in pediatric oncology: a mixed-methods feasibility study conducted with parents and healthcare professionals.

BACKGROUND: Studies have shown that supporting parents in pediatric oncology reduces family distress following a cancer diagnosis. Manualized programs for parents have therefore been developed to reduce family distress. However, these programs have limitations that need to be improved, such as better defining programs' procedures, developing interventions focusing on parents' conjugal relationship, conducting rigorous evaluations of implementation, and proposing adaptations to various cultural dimensions. According to the Obesity-Related Behavioral Intervention Trials (ORBIT) model for the development of behavioral intervention, we improved these limitations and developed TAKING BACK CONTROL TOGETHER, a six in-person intervention sessions to support parents of children with cancer by taking the active components of two programs: Bright IDEAS and SCCIP. Referring to the redesign phase of the ORBIT model, this study aims to refine the definition of this program's design by interviewing parents and healthcare professionals. METHODS: In order to refine the program, we used a sequential mixed-methods study. Parents and healthcare professionals first completed questionnaires assessing the program, and then discussed its limitations, benefits, and areas for improvement in group and/or individual interviews. We performed a descriptive thematic content analysis of the qualitative data from the open-ended questions (questionnaires and interviews) with NVivo 11 to categorize recommendations for the program refinement. RESULTS: The results showed that components seemed pertinent to final users. The main areas needing improvement were the level of complexity and understandability of the parent manual, the possibility to choose the place and time of the intervention, and the lack of ethnic/cultural diversity. Changes to the program were made accordingly. CONCLUSIONS: It is necessary to include end-users when developing complex intervention programs designed for vulnerable populations and sensitive clinical contexts. Following the present refinement, we now have a treatment package, which is safe and acceptable for the target population and has a better chance of yielding a clinically significant benefit for users in a future pilot study.

Categorizing factors of adherence to parenteral treatment in growth hormone deficiencies and hemophilia: What should be the targets for future research?

Adherence to treatment regimens in growth hormone dysregulations and hemophilia is related to better outcome and fewer complications over time. Subcutaneous growth hormone injection and intravenous blood factor replacement therapies are parenteral treatments with a comparable regimen calling for similar behavioral processes. Although we have lists of possible factors influencing adherence in these conditions, the evidence is scattered. The objective of this study was to systematically review empirical studies linking factors of adherence with measures of adherence. To categorize the factors, we used a taxonomy from the diabetes literature. We used four major electronic databases to identify articles. We synthesized 27 articles dated 2011-2017 corresponding to inclusion criteria. Results showed a consistent proportion of 20%-25% participants with adherent issues. Strong arguments pointed to the transition to self-care in pediatrics as a vulnerability period (7/27 reports). We found the domains of individual factors (<30% reports), relational factors (<13%), health care (<30%), to be understudied in comparison with that of demographic or clinical context (>74%), and practical issues (>37%). The results suggest that future research should focus on modifiable factors of adherence, with appropriate measurement and intervention strategies. One central methodological limitation of reviewed reports was the lack of longitudinal designs, and the quasi absence of behavioral trial targeting modifiable factors of adherence. A new research agenda should be set in these rare diseases as higher adherence should translate into improved outcome and better quality of life for patients and their families.

Cancer-related effects on relationships, long-term psychological status and relationship satisfaction in couples whose child was treated for leukemia: A PETALE study.

OBJECTIVES: Follow-up studies suggest that the psychosocial impact of pediatric cancer on parents often extends beyond the end of their child's cancer treatments, and parents can continue to experience both individual and relationship effects. In a long-term study of parents of children who were treated for acute lymphoblastic leukemia (ALL), we aimed to: 1) describe parents' adjustment (psychological distress, relationship satisfaction; 2) describe the perceived impact of cancer on couples' relationship, and; 3) identify to what extent the perceived impact of cancer on the couple is related to both parents' long-term adjustment. METHODS: Parents of childhood ALL survivors (n = 103 couples) were surveyed as part of a cohort recall (PETALE cohort). Both parents completed questionnaires exploring adjustment (Brief Symptom Inventory-18, Dyadic Adjustment Scale) and perceived impact of cancer on the relationship (Impact of Cancer on the Couple). Mothers' and fathers' scores were compared using MANOVAs. We also examined the degree to which a parent's perceived changes in relationship dynamics following their child's cancer were associated with their own current adjustment (actor effects), and their partner's current adjustment (partner effects) using the Actor-Partner Interdependence Model (APIM). RESULTS: Frequencies of current distress were normative in parents (mothers/fathers): general distress (6.8/7.8%), anxiety (5.8/6.8%), depression (2.9/6.8%), somatization (13.6/9.7%), and relationship distress (21.4/20.4%). Mothers and fathers typically agreed on their reported relationship satisfaction, and the perceived nature of relationship changes following the illness. Dyadic analyses indicated that whereas mothers' adjustment was related to their own perceived relationship changes, fathers' adjustment was primarily related to their partner's perceptions. CONCLUSION: In long-term stable couples, mothers may act as an influential bridge connecting the illness experiences of survivors and fathers. This could explain why mothers' perceptions of relationship changes were related to their partners' long-term adjustment, which was not the case for fathers.

Outcomes of MBSR or MBSR-based interventions in health care providers: A systematic review with a focus on empathy and emotional competencies.

BACKGROUND: Emotional competencies are extremely important for healthcare providers exposed to patients' suffering. The effect of mindfulness-based stress reduction (MBSR) has been studied in this population. However, it is unclear whether capacities identified as core for care are modified favourably by this intervention. OBJECTIVES: (1) To identify outcomes in studies on the effect of MBSR in healthcare providers. (2) To evaluate the impact of MBSR on these outcomes. (3) To assess current knowledge on whether capacities central to care are positively impacted by MBSR: empathy, identification of one's own emotions, identification of other's emotions and emotional acceptance. METHODS: We performed a systematic review on interventional studies published up to 2015 evaluating the effect of MBSR in healthcare professionals. A subset of studies including empathy and emotional competencies was assessed for bias following current methodological standards. RESULTS: Thirty nine studies were identified. 14/39 studies measured empathy or some form of emotional competence in healthcare providers. Evidence regarding the effects of MBSR in professionals suggests this intervention is associated with improvements in burnout, stress, anxiety and depression. Improvements in empathy are also suggested but no clear evidence is currently available on emotional competencies. CONCLUSIONS: High quality evidence is available on the effect of MBSR on professionals' mental health. However, while some emotional competencies have been identified as being of major importance for high quality care, they are still scarcely studied. Studying these outcomes is important, as it may help explain how mindfulness contributes to professionals' mental health and thus help develop targeted interventions.