Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions

Purpose: Few studies have addressed the way in which families of children with cancer make treatment decisions, and how we can meet parents’ and young peoples’ decisional involvement needs. We aimed to explore parents’ and adolescents’ views and perceptions of making medical decisions in pediatric oncology. Methods: We conducted semi-structured interviews with 25 parents of children diagnosed with cancer in the past 12 months, and 5 adolescents diagnosed in the past 12 months. Our interview schedule was underpinned by Elwyn and Miron-Shatz’s decision-making model. The model acknowledges the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis. Results: Our findings indicate that information provision is not enough to facilitate parents’ decision-making involvement. Many parents sought additional information to meet their individual needs and preferences. While many parents and young people desired decisional involvement, they trusted the doctors to make treatment decisions. Feelings of distress, inadequacy, and lack of choice impacted decision-making participation. Regardless, many parents in our study were satisfied with treatment decisions, but this was largely dependent on positive treatment outcomes. Conclusion: Our study contributes to understanding how families of a child with cancer make treatment decisions. Families tend to rely on doctors to make treatment decisions, but often seek additional information to help them feel involved in the decision process. Findings highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice

10 simple rules to create a serious game, illustrated with examples from structural biology

Serious scientific games are games whose purpose is not only fun. In the field of science, the serious goals include crucial activities for scientists: outreach, teaching and research. The number of serious games is increasing rapidly, in particular citizen science games, games that allow people to produce and/or analyze scientific data. Interestingly, it is possible to build a set of rules providing a guideline to create or improve serious games. We present arguments gathered from our own experience ( Phylo , DocMolecules , HiRE-RNA contest and Pangu) as well as examples from the growing literature on scientific serious games

Providing psychological support to parents of childhood cancer survivors: ‘cascade’ intervention trial results and lessons for the future

We conducted a three‐armed trial to assess Cascade, a four‐module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer‐ support group), or a waitlist. The primary outcome was parents’ health‐related quality of life (PedsQL‐Family Impact/EQ‐5D‐5L) six months post‐intervention. Parents also reported their anxiety/depression, parenting self‐agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child’s quality of life. Seventy‐six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents’ health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre‐enrolment. We used these findings to improve Cascade and will trial the new version in future

Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial

Telehealth interventions offer a practical platform to support adolescent and young adult (AYA) cancer survivors' mental health needs after treatment, yet efficacy data are lacking. We evaluated an online, group-based, videoconferencing-delivered cognitive-behavioral therapy (CBT) intervention ('Recapture Life') in a 3-arm randomized-controlled trial comparing Recapture Life with an online peer-support group, and a waitlist control, with the aim of testing its impact on quality of life, emotional distress and healthcare service use. Forty AYAs (Mage = 20.6 years) within 24-months of completing treatment participated, together with 18 support persons. No groupwise impacts were measured immediately after the six-week intervention. However, Recapture Life participants reported using more CBT skills at the six-week follow-up (OR = 5.58, 95% CI = 2.00-15.56, p = 0.001) than peer-support controls. Recapture Life participants reported higher perceived negative impact of cancer, anxiety and depression at 12-month follow-up, compared to peer-support controls. Post-hoc analyses suggested that AYAs who were further from completing cancer treatment responded better to Recapture Life than those who had completed treatment more recently. While online telehealth interventions hold promise, recruitment to this trial was challenging. As the psychological challenges of cancer survivorship are likely to evolve with time, different support models may prove more or less helpful for different sub-groups of AYA survivors at different times

Emergent global patterns of ecosystem structure and function from a mechanistic general ecosystem model

Anthropogenic activities are causing widespread degradation of ecosystems worldwide, threatening the ecosystem services upon which all human life depends. Improved understanding of this degradation is urgently needed to improve avoidance and mitigation measures. One tool to assist these efforts is predictive models of ecosystem structure and function that are mechanistic: based on fundamental ecological principles. Here we present the first mechanistic General Ecosystem Model (GEM) of ecosystem structure and function that is both global and applies in all terrestrial and marine environments. Functional forms and parameter values were derived from the theoretical and empirical literature where possible. Simulations of the fate of all organisms with body masses between 10 µg and 150,000 kg (a range of 14 orders of magnitude) across the globe led to emergent properties at individual (e.g., growth rate), community (e.g., biomass turnover rates), ecosystem (e.g., trophic pyramids), and macroecological scales (e.g., global patterns of trophic structure) that are in general agreement with current data and theory. These properties emerged from our encoding of the biology of, and interactions among, individual organisms without any direct constraints on the properties themselves. Our results indicate that ecologists have gathered sufficient information to begin to build realistic, global, and mechanistic models of ecosystems, capable of predicting a diverse range of ecosystem properties and their response to human pressures

Spinal involvement in mucopolysaccharidosis IVA (Morquio-Brailsford or Morquio A syndrome): presentation, diagnosis and management.

Mucopolysaccharidosis IVA (MPS IVA), also known as Morquio-Brailsford or Morquio A syndrome, is a lysosomal storage disorder caused by a deficiency of the enzyme N-acetyl-galactosamine-6-sulphate sulphatase (GALNS). MPS IVA is multisystemic but manifests primarily as a progressive skeletal dysplasia. Spinal involvement is a major cause of morbidity and mortality in MPS IVA. Early diagnosis and timely treatment of problems involving the spine are critical in preventing or arresting neurological deterioration and loss of function. This review details the spinal manifestations of MPS IVA and describes the tools used to diagnose and monitor spinal involvement. The relative utility of radiography, computed tomography (CT) and magnetic resonance imaging (MRI) for the evaluation of cervical spine instability, stenosis, and cord compression is discussed. Surgical interventions, anaesthetic considerations, and the use of neurophysiological monitoring during procedures performed under general anaesthesia are reviewed. Recommendations for regular radiological imaging and neurologic assessments are presented, and the need for a more standardized approach for evaluating and managing spinal involvement in MPS IVA is addressed

Rapid Reactivation of Extralymphoid CD4 T Cells during Secondary Infection

After infection, extralymphoid tissues are enriched with effector and memory T cells of a highly activated phenotype. The capacity for rapid effector cytokine response from extralymphoid tissue-memory T cells suggests these cells may perform a ‘sentinel’ function in the tissue. While it has been demonstrated that extralymphoid CD4+ T cells can directly respond to secondary infection, little is known about how rapidly this response is initiated, and how early activation of T cells in the tissue may affect the innate response to infection. Here we use a mouse model of secondary heterosubtypic influenza infection to show that CD4+ T cells in the lung airways are reactivated within 24 hours of secondary challenge. Airway CD4+ T cells initiate an inflammatory cytokine and chemokine program that both alters the composition of the early innate response and contributes to the reduction of viral titers in the lung. These results show that, unlike a primary infection, extralymphoid tissue-memory CD4+ T cells respond alongside the innate response during secondary infection, thereby shaping the overall immune profile in the airways. These data provide new insights into the role of extralymphoid CD4+ T cells during secondary immune responses

Blood pressure self-monitoring in pregnancy: examining feasibility in a prospective cohort study

Background: Raised blood pressure (BP) affects approximately 10% of pregnancies worldwide, and a high proportion of affected women develop pre-eclampsia. This study aimed to evaluate the feasibility of self-monitoring of BP in pregnancy in women at higher risk of pre-eclampsia. Methods: This prospective cohort study of self-monitoring BP in pregnancy was carried out in two hospital trusts in Birmingham and Oxford and thirteen primary care practices in Oxfordshire. Eligible women were those defined by the UK National Institute for Health and Care Excellence (NICE) guidelines as at higher risk of pre-eclampsia. A total of 201 participants were recruited between 12 and 16 weeks of pregnancy and were asked to take two BP readings twice daily three times a week through their pregnancy. Primary outcomes were recruitment, retention and persistence of self-monitoring. Study recruitment and retention were analysed with descriptive statistics. Survival analysis was used to evaluate the persistence of self-monitoring and the performance of self-monitoring in the early detection of gestational hypertension, compared to clinic BP monitoring. Secondary outcomes were the mean clinic and self-monitored BP readings and the performance of self-monitoring in the detection of gestational hypertension and pre-eclampsia compared to clinic BP. Results: Of 201 women recruited, 161 (80%) remained in the study at 36 weeks or to the end of their pregnancy, 162 (81%) provided any home readings suitable for analysis, 148 (74%) continued to self-monitor at 20 weeks and 107 (66%) at 36 weeks. Self-monitored readings were similar in value to contemporaneous matched clinic readings for both systolic and diastolic BP. Of the 23 who developed gestational hypertension or pre-eclampsia and self-monitored, 9(39%) had a raised home BP prior to a raised clinic BP. Conclusions: Self-monitoring of BP in pregnancy is feasible and has potential to be useful in the early detection of gestational hypertensive disorders but maintaining self-monitoring throughout pregnancy requires support and probably enhanced training

Association between anthropometric indices and cardiometabolic risk factors in pre-school children

ABSTRACT: The world health organization (WHO) and the Identification and prevention of dietary- and lifestyle-induced health effects in children and infants- study (IDEFICS), released anthropometric reference values obtained from normal body weight children. This study examined the relationship between WHO [body mass index (BMI) and triceps- and subscapular-skinfolds], and IDEFICS (waist circumference, waist to height ratio and fat mass index) anthropometric indices with cardiometabolic risk factors in pre-school children ranging from normal body weight to obesity. Methods: A cross-sectional study with 232 children (aged 4.1 ± 0.05 years) was performed. Anthropometric measurements were collected and BMI, waist circumference, waist to height ratio, triceps- and subscapular-skinfolds sum and fat mass index were calculated. Fasting glucose, fasting insulin, homeostasis model analysis insulin resistance (HOMA-IR), blood lipids and apolipoprotein (Apo) B-100 (Apo B) and Apo A-I were determined. Pearson’s correlation coefficient, multiple regression analysis and the receiver-operating characteristic (ROC) curve analysis were run. Results: 51 % (n = 73) of the boys and 52 % (n = 47) of the girls were of normal body weight, 49 % (n = 69) of the boys and 48 % (n = 43) of the girls were overweight or obese. Anthropometric indices correlated (p 0.68 to AUC < 0.76). Conclusions: WHO and IDEFICS anthropometric indices correlated similarly with fasting insulin and HOMA-IR. The diagnostic accuracy of the anthropometric indices as a proxy to identify children with insulin resistance was similar. These data do not support the use of waist circumference, waist to height ratio, triceps- and subscapular- skinfolds sum or fat mass index, instead of the BMI as a proxy to identify pre-school children with insulin resistance, the most frequent alteration found in children ranging from normal body weight to obesity