A decision aid for nutrition support is acceptable in the pediatric hospital setting

Purpose: Incorporating a Decision Aid (DA) about nutrition support into the general pediatric healthcare setting may improve parent and patient understanding about the risks and benefits of nutrition support options. We aimed to evaluate the acceptability and usability of our newly developed DA for parents of children in the general pediatric healthcare setting who require nutrition support. Design and methods: Participants were 18 parents with a child who had received nutrition support; and 12 Healthcare Professionals (HCPs) involved in pediatric nutrition support discussions. Parents' and HCPs' ratings of acceptability and feasibility of the booklet, and parents' perceived knowledge acquisition after reading the booklet were assessed. Results: Parents were satisfied with the DA, reporting that it was an appropriate length and unbiased. Most parents felt the DA was relevant to their decision-making, improved understanding, and would recommend it to other parents. HCPs felt that the booklet clearly described the essential information for nutrition support options, but less certain of the booklets' impact on parent decision-making. Regardless, most HCPs would recommend the booklet to other clinicians. Conclusion: Our decision aid appears to be acceptable and useful for parents deciding on nutrition support for their child in the general pediatric hospital setting. Practice implications: A DA may facilitate shared decision-making through improved understanding of the risks and benefits of different nutrition support options in the pediatric setting. Further evaluation is required with specific pediatric conditions, to determine the effectiveness for parents actively deciding on their child's nutrition support

Surgeon reported measures of stress and anxiety prior to and after elective gynecological surgery

Introduction: Performing surgical procedures is a recognized source of stress for surgeons. Vocational stress is an important contributor to performance, patient care, and burnout with dispositional and environmental factors contributing. Accurately assessing surgeon stress is critical to measuring effectiveness of stress reduction programs. The primary aim was to identify differences between surgeons' self-reported anticipated stress and anxiety prior to gynecological surgery, compared with their recollection of experienced stress and anxiety during surgery. Secondary aims assessed any differences by level of training, surgical type, and surgeon role. Material and methods: Attending and resident gynecologists performing routine elective surgeries completed a visual analog scale (VAS) assessing perceived stress and the State–Trait Anxiety Inventory (STAI) prior to and immediately after completing 161 elective surgeries including total laparoscopic hysterectomy, laparoscopic excision of moderate–severe endometriosis, or hysteroscopic myomectomy. Results: Eight attending gynecologists and nine residents participated. Residents commenced as primary surgeon in 62/90 (69%) procedures. Stress experienced during surgery was greater than anticipated in 92/161 (57%) surgery episodes (mean VAS increase: 3.9; 95% CI: 1.1–6.8, p = 0.009). State anxiety was greater than anticipated in 99/161 (62%) episodes (mean state anxiety increase: 4.4; 95% CI: 3.0–5.8, p < 0.001). Greater preprocedural anticipatory stress and anxiety was observed in residents vs. attending gynecologists (VAS 51.9 vs. 22.8, p < 0.001; state anxiety 38.3 vs. 28.1, p < 0.001) and in primary vs. assistant surgeons (VAS 47.2 vs. 29.9, p < 0.001; state anxiety 36.9 vs. 28.3, p < 0.001). Intraoperative stress and anxiety were greater in primary surgeons (VAS 50.4 vs. 30.5, p < 0.001; anxiety 41.3 vs. 32.5, p < 0.001) and residents (VAS 43.4 vs. 31.7, p < 0.001; anxiety 53.5 vs. 33.7, p < 0.001) compared with assistants and attending gynecologists. Perceived stress and anxiety were positively correlated at both timepoints (r = 0.68, p < 0.001; r = 0.82, p < 0.001). Conclusions: When asked to reflect on stress experienced during surgery, our data show that stress during surgery is greater than anticipated for many surgical episodes. Self-reported stress symptoms commence prior to surgery and are more commonly reported by surgeons operating as primary surgeon and by those in training. Future research should focus on determinants of presurgical stress and examine when stressors become inhibitory to performance

A systematic review of biological changes in surgeons’ acute stress levels during surgery

Background: While a degree of stress facilitates learning and task performance, excessive stress in surgeons may lead to poor patient outcomes, with maladaptive stress as a risk factor for surgeon burnout or self-harm through mechanisms including substance abuse, and suicide. We aim to systematically review publications investigating how measures of surgeons’ acute biological stress change during surgery. Methods: Medline, Embase, Cochrane library, and The United States, Australian, and European clinical trials registries were searched using the terms stress; surgeon; cortisol; skin conductance; and heart rate. Studies had to report at least one measure of biological stress related to surgery or simulated surgical exercise and have been published between January 1996 to June 2022. Results: Twenty-eight studies with a total of 433 participants met inclusion criteria with cortisol, heart rate, heart rate variability, and electrodermal activity being reported. Salivary cortisol was measured in four studies with conflicting directional changes reported. Mean heart rate increased in nine studies (by 6-22 beats/minute), however the impact of the physical work of surgery was not reported. Heart rate variability, as measured by low-frequency to high-frequency ratio, was significantly increased in three of six studies. One study measured electrodermal activity reporting significant increase in skin conductance in a simulation setting. Conclusion: While some biological measures appear able to detect changes in acute stress in surgeons (particularly heart rate), appropriate measures of stress during non-stressful and stressful surgery are yet to be fully identified. Importantly, there are no current pathways for identifying surgeons at risk of burnout or self-harm and this is a critical unmet research need

Parent perceptions of their child’s and their own physical activity after treatment for childhood cancer

Purpose: Parents are important facilitators of physical activity for children, yet little is known about the perceptions of parents of childhood cancer survivors. We investigated parent perceptions of their own and their child’s physical activity levels after cancer treatment and examined associations with clinical, demographic, and psychosocial factors. Methods: We conducted a cross-sectional survey among 125 parents and 125 survivors. Parents reported on the perceived importance of their child being physically active and concerns regarding exercising after cancer treatment. Results: Parents and survivors self-reported median (range) of 127.5 (0–1260) and 220 (0–1470) min/week of moderate-to-vigorous physical activity. Most parents (n = 109, 98%) believed that physical activity was highly important for their child. Some parents (n = 19, 17%) reported concerns, most commonly regarding exercise safety (n = 7, 22%). Parents were more likely to perceive that their child should increase physical activity if their child was an adolescent and had high body fat percentage. Conclusions: Physical activity levels varied widely among survivors, reflecting factors including parents’ lifestyles, limited understanding of exercise benefits and perceptions of risk. Given survivors’ insufficient physical activity levels and sedentary behaviour among families, embedding physical activity promotion into health systems and follow-up support could benefit the entire family unit

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

A Digital Educational Intervention With Wearable Activity Trackers to Support Health Behaviors Among Childhood Cancer Survivors: Pilot Feasibility and Acceptability Study

Background: Childhood cancer survivors are at increased risk of cardiometabolic complications that are exacerbated by poor health behaviors. Critically, many survivors do not meet physical activity guidelines. Objective: The primary aim was to evaluate the feasibility and acceptability of iBounce, a digital health intervention for educating and engaging survivors in physical activity. Our secondary aims were to assess the change in survivors’ physical activity levels and behaviors, aerobic fitness, and health-related quality of life (HRQoL) after participating in the iBounce program. Methods: We recruited survivors aged 8 to 13 years who were ≥12 months post cancer treatment completion. The app-based program involved 10 educational modules, goal setting, and home-based physical activities monitored using an activity tracker. We assessed objective physical activity levels and behaviors using cluster analysis, aerobic fitness, and HRQoL at baseline and after the intervention (week 12). Parents were trained to reassess aerobic fitness at home at follow-up (week 24). Results: In total, 30 participants opted in, of whom 27 (90%) completed baseline assessments, and 23 (77%) commenced iBounce. Our opt-in rate was 59% (30/51), and most (19/23, 83%) of the survivors completed the intervention. More than half (13/23, 57%) of the survivors completed all 10 modules (median 10, IQR 4-10). We achieved a high retention rate (19/27, 70%) and activity tracker compliance (15/19, 79%), and there were no intervention-related adverse events. Survivors reported high satisfaction with iBounce (median enjoyment score 75%; ease-of-use score 86%), but lower satisfaction with the activity tracker (median enjoyment score 60%). Parents reported the program activities to be acceptable (median score 70%), and their overall satisfaction was 60%, potentially because of technological difficulties that resulted in the program becoming disjointed. We did not observe any significant changes in physical activity levels or HRQoL at week 12. Our subgroup analysis for changes in physical activity behaviors in participants (n=11) revealed five cluster groups: most active, active, moderately active, occasionally active, and least active. Of these 11 survivors, 3 (27%) moved to a more active cluster group, highlighting their engagement in more frequent and sustained bouts of moderate-to-vigorous physical activity; 6 (56%) stayed in the same cluster; and 2 (18%) moved to a less active cluster. The survivors’ mean aerobic fitness percentiles increased after completing iBounce (change +17, 95% CI 1.7-32.1; P=.03) but not at follow-up (P=.39). Conclusions: We demonstrated iBounce to be feasible for delivery and acceptable among survivors, despite some technical difficulties. The distance-delivered format provides an opportunity to engage survivors in physical activity at home and may address barriers to care, particularly for regional or remote families. We will use these pilot findings to evaluate an updated version of iBounce

Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer

Objective: Families of a child with cancer can find the decision to enrol in a clinical trial challenging and often misunderstand key concepts that underpin trials. We pilot tested “Delta,” an online and booklet decision aid for parents with a child with cancer, and adolescents with cancer, deciding whether or not to enrol in a clinical trial. Methods: We developed Delta in accordance with the International Patient Decision Aid Standards. We conducted a pre-post pilot with parents with a child, and adolescents, who had enrolled in a paediatric phase III clinical trial for newly diagnosed acute lymphoblastic leukaemia. Parents (n = 37) and adolescents (n = 3) completed a questionnaire before and after using Delta (either the website or booklet, based on their preference). Results: Twenty-three parents (62.2%) and three adolescents (100%) reviewed the Delta website. Parents rated Delta as highly acceptable in regard to being clearly presented, informative, easy to read, useful, visually appealing, and easy to use. All participants reported that they would recommend Delta to others and that it would have been useful when making their decision. Parents' subjective (Mdiff=10.8, SDdiff = 15.69, P <.001) and objective (OR = 2.25, 95% CI, 1.66-3.04; P <.001) clinical trial knowledge increased significantly after reviewing Delta. Conclusions: To our knowledge, Delta is the first reported decision aid, available online and as a booklet, for parents and adolescents deciding whether or not to enrol in a paediatric oncology clinical trial. Our study suggests that Delta is acceptable, feasible, and potentially useful

Access to and experience of education for children and adolescents with cancer: a scoping review protocol

BACKGROUND: Cancer diagnosis in childhood or adolescence impacts significantly on school attendance, experience and educational outcomes. While there is longstanding recognition in clinical practice that these effects span the whole illness trajectory and continue beyond treatment completion, further clarity is required on the specific barriers and facilitators to education during cancer treatment and beyond, as well as on the experiences of children and adolescents across the full range of education settings (hospital, home, virtual, original school of enrolment), in order to determine which interventions are successful in improving access and experience from their perspective. The aim of this review is to identify what is known from the existing literature about access to and experience of education for children and adolescents with cancer during and post treatment. METHODS: We have planned a scoping literature review searching the following databases from inception onwards: MEDLINE (Ovid), Embase and Embase Classic, Web of Science Core Collection, Education Resources Index, Sociological Abstracts, APA PsycINFO, SCOPUS, CINAHL Plus, Emcare and The Cochrane Library. In addition, DARE, conference abstracts, key journals, and institutional websites will be searched. Arksey and O'Malley's six-step process will be followed, including a consultation exercise. Studies, reports and policies from any country providing care and treatment for children and adolescents with cancer published in English will be considered eligible for inclusion. Two reviewers will independently screen all citations, full-text articles and abstract data. A narrative summary of findings will be conducted. Data analysis will involve quantitative (e.g., frequencies) and qualitative (e.g., content and thematic analysis) methods. DISCUSSION: This is a timely examination given the increased incidence of childhood cancer, more intensive treatment regimens and improved survival rates for childhood cancer. The inclusion of a substantive consultation exercise with families and professionals will provide an important opportunity to examine the scoping review outputs. Findings will assist the childhood cancer community in developing a comprehensive evidence-based understanding of a significant associated bio-psychosocial impact of cancer diagnosis and treatment and will form the first step towards developing effective interventions and policies to mitigate identified detrimental effects. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework (osf/io/yc4wt)

Reproductive Care of Childhood and Adolescent Cancer Survivors: A 12-Year Evaluation

Background: Reproductive complications for cancer survivors are identified as one of the top unmet needs in the survivorship period. However, current models of cancer care do not routinely incorporate reproductive follow-up for pediatric or adolescent cancer patients. The Kids Cancer Centre has had a one-stop survivorship clinic that includes the attendance of a gynecologist and fertility specialist for the last 12 years. Methodology: To inform the future development of our reproductive survivorship care, we reviewed the reproductive care our survivorship clinic has provided over a 12-year period, specifically reviewing the electronic and patient records to collect information on the demographics of the patients who used the service and their gonadotoxic risk and associated fertility treatment, their documented reproductive needs and concerns, and information provided on preventative reproductive advice and screening. Main Results: Two hundred seventy-eight patients were seen (397 consultations) for advice and management of reproductive issues, including 189 female patients (68.0%). Survivors' median age at follow-up was 25.0 years (range = 6-50), on average 19.2 years from their primary diagnosis (range = 3-46). The reviewed data had five overarching themes (fertility care, hormone dysfunction, sexual dysfunction, fertility-related psychological distress due to reproductive concerns, and preventative health care), although each theme had a number of components. Patients had on average 2.5 reproductive concerns documented per consultation (range 1-5). The three most commonly documented symptoms or concerns at the initial consultation related to fertility status (43.9%), endocrine dysfunction (35.3%), and contraception advice (32.4%). In patients younger than 25 years, documented discussions were predominately about endocrine dysfunction, fertility status, and contraception, while dominant themes for 26-35-year olds were fertility status, reproductive-related health prevention strategies, contraception, and endocrine dysfunction. Survivors 36-45 years of age prioritized fertility status, pregnancy, and contraception. Fertility preservation (FP) (p = 0.05), preventative health strategies (p = 0.001), and contraception advice (p < 0.001) were more commonly discussed by females than males. Conclusion: Young cancer survivors have multiple ongoing reproductive concerns that change over time. Assessing survivors' reproductive potential following cancer treatment is important as it gives patients who have not completed their family planning an opportunity to explore a possible window to FP or Assisted Reproductive Treatment. Our data can assist in informing the model of care for a reproductive survivorship clinic

The lived experience of people affected by cancer: A global cross-sectional survey protocol

A diagnosis of cancer impacts the person’s physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.g., bereaved family members), as well as the impact on survivors and their families over time. The objective of this study is to describe the psychosocial and financial impact of cancer on people diagnosed with cancer as a child, adolescent or adult, their families/caregivers, and the family members of those who have died from cancer, in high-income countries (HICs) and LMICs. This study is an observational, descriptive, quantitative study. Data will be collected anonymously via a digital online cross-sectional survey distributed globally by the World Health Organization (WHO) via the LimeSurvey software. Participants will include (a) adults aged 18+ who have been diagnosed with cancer at any age, who are currently undergoing cancer treatment or who have completed cancer treatment; (b) adult family members of individuals of any age with a cancer diagnosis, who are currently undergoing cancer treatment or who have completed cancer treatment; and (c) bereaved family members. Participants will be anonymously recruited via convenience and snowball sampling through networks of organisations related to cancer. Survey results will be analysed quantitatively per respondent group, per time from diagnosis, per disease and country. Results will be disseminated in peer-reviewed journals and at scientific conferences; a summary of results will be available on the WHO website. This study will suggest public health interventions and policy responses to support people affected by cancer and may also lead to subsequent research focusing on the needs of people affected by cancer