Healthcare professional perspectives following implementation of an infection management care pathway for pediatric patients with cancer: a qualitative study.

PURPOSE: The Pediatric Oncology Group of Ontario (POGO) supported an effort to implement infection management care pathways based on clinical practice guidelines, to improve the consistency of infection management in pediatric cancer patients. The objective of this qualitative study was to describe the perspective of healthcare professionals (HCPs) following implementation. METHODS: Four tertiary pediatric oncology centers in Ontario, Canada, implemented the pathways. We randomly identified three HCPs per group (clinical pharmacists; nurse case managers, educators or practitioners and physician assistants; pediatric oncology fellows; or pediatric oncology staff physicians) per site and invited them to participate in a qualitative interview. One-on-one interviews were conducted remotely, followed by thematic analysis of interview transcripts. RESULTS: A total of 66 invitations were extended and 42 HCPs participated. Identified themes were: (1) implementation approach, (2) access and navigation, (3) engagement, (4) concerns, (5) workplace benefits, (6) reception, and (7) provincial harmonization. HCPs preferred in-person implementation strategies over e-mail communication. They identified teaching/educational utility and benefits to non-oncology departments and non-tertiary centers participating in shared care of patients. Other positive aspects related to evidence-based practice, safety, supporting oncology HCPs, and benefits to patients and families. Concerns included need to ensure users applied clinical judgement and loss of autonomy. Provincial harmonization of practice was viewed positively, although potential logistical and institutional cultural barriers were raised. CONCLUSIONS: Following infection management care pathway implementation, HCPs described educational utility and benefits to non-oncology departments, oncology HCPs, patients, and families. Our findings may facilitate future infection management care pathway provincial harmonization.

Symptom documentation and intervention in paediatric cancer care-association with severity: observational study.

OBJECTIVES: Primary objectives were to determine the relationship between prevalence of symptom documentation and intervention provision, and increasing severity of bothersome symptoms, as identified by guardians using guardian-reported Symptom Screening in Pediatrics Tool (proxy-SSPedi), which is validated and measures the extent of bothersome symptoms in paediatric patients with cancer. METHODS: We included guardians of children 2-7 years of age receiving cancer treatments and seen in hospital daily for 4 consecutive days. Guardians reported proxy-SSPedi at study enrolment and 3 days later. Chart review was performed between the day prior and the day following proxy-SSPedi completion. Symptom documentation and intervention provision were determined by two independent abstractors. RESULTS: We enrolled 190 guardians who provided 371 proxy-SSPedi assessments in 190 children. The most common severely bothersome symptoms were 'feeling tired', 'feeling more or less hungry than they usually do' and 'feeling cranky or angry'. Among those with increasing severity of bother, documentation was significantly more common for 12 symptoms while intervention was significantly more common for 7 symptoms. Intervention was not significantly more common with increasing severity of bother due to 'feeling tired', 'feeling more or less hungry than they usually do' and 'feeling cranky or angry'. CONCLUSIONS: Symptom documentation was generally more common in patients with severely bothersome symptoms. Intervention was not more common among those with increasing severity of bother due to fatigue, changes in hunger or anger, which were the most common severely bothersome symptoms. Future efforts should focus on facilitating intervention provision to patients with bothersome symptoms.

Validation of co-Symptom Screening in Pediatrics Tool: a novel dyadic approach to symptom screening in pediatric patients receiving cancer treatment.

BACKGROUND: Co-Symptom Screening in Pediatrics Tool (co-SSPedi) is a dyadic (child-guardian) approach to symptom assessment. Objectives were to evaluate the reliability and validity of co-SSPedi for pediatric patients receiving cancer treatments. METHODS: This multicenter study included dyads of patients aged 4-18 years of age with cancer or undergoing hematopoietic cell transplant and their guardians. Two groups were enrolled. The more symptomatic group included those receiving active treatment for cancer or undergoing hematopoietic cell transplant where patients were in hospital or clinic for 4 consecutive days. The less symptomatic group included those receiving maintenance therapy for acute lymphoblastic leukemia or who had completed cancer treatments. At baseline, all dyads completed co-SSPedi, and guardians completed measures of mucositis, nausea, pain, quality of life, and overall symptoms. In the more symptomatic group, dyads completed co-SSPedi and a global symptom change scale on day 4. RESULTS: There were 501 dyads included: 301 in the more symptomatic group and 200 in the less symptomatic group. Median time to complete co-SSPedi was less than 3 minutes in both groups. Test-retest reliability intraclass correlation coefficient was 0.85 (95% confidence interval [CI] = 0.77 to 0.90). For internal consistency, total co-SSPedi Cronbach alpha was 0.81 (95% CI = 0.78 to 0.83). For known groups validation, mean difference in total co-SSPedi scores between the more symptomatic and less symptomatic groups was 7.8 (95% CI = 6.7 to 8.8; P < .0001). For convergent validation and responsiveness, all hypothesized relationships were demonstrated. CONCLUSIONS: Co-SSPedi is a novel approach to dyadic symptom assessment that is reliable, valid, and responsive in pediatric patients aged 4-18 years.

Randomized trial of dyadic-report vs proxy-report and self-report symptom assessment for pediatric patients receiving cancer treatments.

BACKGROUND: We validated different approaches to symptom assessment for pediatric cancer patients based on the Symptom Screening in Pediatrics Tool (SSPedi) for self-report (SSPedi and mini-SSPedi), proxy-report (proxy-SSPedi), and structured dyadic-report (co-SSPedi). The objective was to compare co-SSPedi scores vs proxy-report (proxy-SSPedi) and self-report (SSPedi or mini-SSPedi) scores for pediatric patients receiving cancer treatments. METHODS: This was a single-center, randomized crossover study enrolling English-speaking dyads of pediatric patients with cancer or hematopoietic cell transplant recipients 4-18 years old and their guardians. Dyads were randomized to first complete the dyadic-report (co-SSPedi) or self-report (patients: SSPedi or mini-SSPedi) and proxy-report (guardians: proxy-SSPedi). Dyads then crossed over to the alternate approach. Primary analysis compared total SSPedi scores between randomized groups. RESULTS: We enrolled 420 dyads that were randomized to co-SSPedi first (n = 213) or proxy-SSPedi and self-report SSPedi first (n = 207). Mean total SSPedi scores (± standard deviation) were co-SSPedi (9.6 ± 7.1), proxy-SSPedi (9.7 ± 7.5; P = .950 for comparison vs co-SSPedi), and self-report SSPedi (9.7 ± 8.2; P = .981 for comparison vs co-SSPedi). Co-SSPedi scores were significantly different from proxy-SSPedi for feeling disappointed or sad, feeling cranky or angry, feeling tired, mouth sores, and changes in taste. Co-SSPedi scores were significantly different from self-report SSPedi scores for problems with thinking or remembering things, feeling tired, mouth sores, tingly or numb hands or feet, and diarrhea. CONCLUSIONS: Total co-SSPedi scores were not significantly different compared with proxy-report or self-report scores, although there were differences in specific symptom scores. If different reporter types are used during clinical implementation, specifying reporter type will be important. The study was registered at clinicaltrials.gov (NCT #05012917). Symptoms are common and frequently severely bothersome in pediatric patients with cancer and hematopoietic cell transplant (HCT) recipients (1). To measure the extent of bothersome symptoms, the Symptom Screening in Pediatrics Tool (SSPedi) suite of symptom assessment tools was developed for pediatric patients receiving cancer treatments and currently consists of multiple validated instruments. SSPedi was developed for self-report by patients 8-18 years of age (2,3). Mini-SSPedi was developed for self-report by patients 4 to 7 years of age (4). Proxy-SSPedi was developed for proxy-report by guardians of pediatric patients 2-18 years of age (5). These 3 instruments can be categorized as either self-report (SSPedi or mini-SSPedi) or proxy-report (proxy-SSPedi).

Guideline for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients: 2023 update.

Objective was to update a clinical practice guideline (CPG) for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients. We reconvened a multi-disciplinary and multi-national panel. While the previous 2018 CPG evaluated adult and pediatric randomized controlled trials (RCTs) to manage fatigue, this 2023 update revised previous recommendations based only on pediatric RCTs. Twenty RCTs were included in the updated systematic review. Physical activity significantly reduced fatigue (standardized mean difference -0.44, 95% confidence interval -0.64 to -0.24; n = 8 RCTs). Using the 2018 recommendations as a basis, the panel continued to make strong recommendations to use physical activity, and to offer relaxation, mindfulness or both, to manage fatigue in pediatric patients. Cognitive or cognitive behavioral therapies may be offered. Pharmacological approaches should not be routinely used. The panel made a new good practice statement to routinely assess for fatigue, ideally using a validated scale.

Describing taste changes and their potential impacts on paediatric patients receiving cancer treatments.

OBJECTIVES: Taste changes are common among paediatric patients receiving cancer treatments although specific descriptions and associations are uncertain. Primary objective was to describe the number of paediatric patients receiving cancer therapies who experienced taste changes, its impact on food intake and enjoyment of eating, and coping strategies. METHODS: This was a cross-sectional study that included English-speaking paediatric patients aged 4-18 years with a diagnosis of cancer or haematopoietic stem cell transplantation recipients receiving active treatment. Using a structured interview, we asked participants about their experience with taste changes, impacts and coping strategies. The respondent was the paediatric patient. RESULTS: We enrolled 108 patients; median age was 11 years (IQR 8-15). The taste changes reported yesterday or today were food tasting bland (34%), bad (31%), different (27%), bitter (25%), extreme (19%), metallic (15%) or sour (12%). Taste changes were associated with decreased food intake (31%) and decreased enjoyment in eating (25%) yesterday or today. The most common coping strategies were eating food they liked (42%), eating strong-tasting food (39%), drinking liquids (35%), brushing teeth (31%) and sucking on candy (25%). Factors significantly associated with food tasting bad were as follows: older age (p=0.003), shorter time since cancer diagnosis (p=0.027), nausea and vomiting (p=0.008) and mucositis (p=0.009). CONCLUSIONS: Among paediatric patients receiving cancer treatments, taste changes were common and were associated with decreased food intake and enjoyment in eating. Common coping strategies were described. Reducing nausea, vomiting and mucositis may improve taste changes.

Finalising the administration of co-SSPedi, a dyad approach to symptom screening for paediatric patients receiving cancer treatments.

OBJECTIVES: Symptom Screening in Pediatrics Tool (SSPedi) is a validated self-report symptom screening tool for patients with cancer 8-18 years of age. Co-SSPedi is a novel dyad approach in which both child and parent complete SSPedi together. The objective was to finalise the approach to co-SSPedi administration with instruction that is easy to understand, resulting in dyads completing co-SSPedi correctly. METHOD: We enrolled child and parent dyads, who understood English and where children (4-18 years) had cancer or were hematopoietic stem cell transplantation recipients. We provided each dyad with instruction on how to complete co-SSPedi together. Mixed methods were used to determine how easy or hard the instruction was to understand. Two raters adjudicated if co-SSPedi was completed correctly. Dyads were enrolled in cohorts of 12 evenly divided by age (4-7, 8-10, 11-14 and 15-18 years). RESULTS: We enrolled 5 cohorts of 12 dyads, resulting in 60 dyads. Following verbal instruction provided in the first cohort, we identified the need for written instruction emphasising children should wait for parent response prior to entering scores. The instruction was iteratively refined based on qualitative feedback until the fifth cohort, where all 12 dyads found the instruction easy to understand and completed co-SSPedi correctly. CONCLUSIONS: We developed a standard approach to dyad symptom screening named co-SSPedi with instruction that is easy to understand, resulting in correct co-SSPedi completion. Future efforts should focus on co-SSPedi validation and understanding how co-SSPedi scores compare to self- or proxy-reported symptom reporting.

Reliability and validity of proxy-SSPedi and mini-SSPedi in pediatric patients 2-7 years receiving cancer treatments.

BACKGROUND: Symptom Screening in Pediatrics Tool (SSPedi) was developed for symptom screening by children 8-18 years. Objectives were to evaluate the reliability and validity of proxy-SSPedi and self-report mini-SSPedi for younger children. METHODS: This multi-center study enrolled guardians of children 2-7 years receiving cancer treatments (proxy-SSPedi) and their children 4-7 years (mini-SSPedi). The two populations were: (1) More symptomatic group where children were receiving active cancer treatment and were in hospital or clinic for four consecutive days; and (2) Less symptomatic group where children were receiving maintenance therapy for acute lymphoblastic leukemia or had completed cancer therapy. Proxy-SSPedi or mini-SSPedi were completed with measures of mucositis, nausea, pain, quality of life and overall symptoms. Respondents in the more symptomatic group repeated proxy-SSPedi/mini-SSPedi and a global symptom change scale 3 days later. RESULTS: There were 402 guardians and 326 children included in the analysis. Test re-test reliability of proxy-SSPedi showed intraclass correlation coefficient (ICC) 0.83 (95% confidence interval (CI) 0.72-0.90). Mean difference in proxy-SSPedi between more and less symptomatic groups was 9.7 (95% CI 8.3-11.1). Proxy-SSPedi was responsive to change and hypothesized relationships between measures were observed. With a priori threshold ≥0.6, inter-rater ICC among all dyads and those 6-7 years were 0.54 (95% CI 0.45-0.62) and 0.62 (95% CI 0.50-0.71) respectively. Among participating children, other hypothesized reliability and validity thresholds were generally met. CONCLUSIONS: Proxy-SSPedi is reliable, valid and responsive in children 2-7 years old receiving cancer treatments. Mini-SSPedi can be used for children 6-7 years of age.

Creating and adapting an infection management care pathway in pediatric oncology.

PURPOSE: While care pathways based upon clinical practice guidelines (CPGs) are important, little is known about optimal approaches to development and adaptation in pediatric oncology. Objectives were to develop care pathway templates for pediatric cancer supportive care that are based upon CPGs and to adapt an infection management care pathway for use at a single institution. METHODS: Study phases were as follows: (1) creation of care pathway templates across multiple supportive care topics; (2) refinement of the infection management care pathway template by interviewing pediatric oncology clinicians at a single institution; and (3) adaptation of the infection management care pathway template for use at a different institution. RESULTS: Informed by seven CPGs, an initial iteration of the infection management care pathway template was created. This template was then refined based upon 20 interviews with pediatric oncology clinicians. Adaptation of the infection management care pathway template for use at a different institution required many changes to improve its clinical usability. Specificity and additional information not considered by the source CPGs were incorporated. CONCLUSION: We developed a process to create care pathway templates across multiple supportive care topics in pediatric oncology and to refine and adapt the infection management care pathway. While we found that the process was feasible, we also identified the need to substantially modify the care pathway during the adaptation process to consider scenarios not addressed by the source CPGs. Future work should measure implementation success.

Mindfulness Practices for Children and Adolescents Receiving Cancer Therapies.

Background: Mindfulness is our innate capacity to pay full, conscious, and compassionate attention to something in the moment. It is also a skill that can be strengthened by mental practice. More recently, mindfulness-based interventions (MBIs) are identified within clinical practice guidelines as an intervention in the treatment of certain symptoms for children with cancer. However, there is little guidance available on the practice of using MBIs in the pediatric oncology population. The aim of this paper is to provide an overview of mindfulness, highlights symptoms where mindfulness practices may be of benefit, identifies trauma-sensitive considerations, and provides examples of MBIs that may be considered in the context of pediatric oncology. Methods: Collaboration of expert opinion, which included The Mindfulness Project Team, has enabled this collective informative paper. Results: Mindfulness has been recommended to help with the symptom of fatigue in children with cancer. Emotional symptoms such as anxiety, sadness, and anger may also benefit from the use of MBIs. Ideal MBIs for this population may include mindful movement, mindfulness of the senses, mindfulness of breath, mindfulness of emotions, and the body scan. These approaches can easily be adapted according to the age of the child. Many approaches have been administered with minimal training, with very few requiring a facilitator. However, hospitals have started to incorporate mindfulness experts within their care provision. Conclusion: Future research should continue to investigate the use of MBI programs for children with cancer.

Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials.

PURPOSE: To examine concordance in symptomatic adverse event (AE) grading using the Common Terminology Criteria for Adverse Events (CTCAE 4.0) for clinicians and its patient-reported outcome (PRO) versions for children (Ped-PRO-CTCAE) and caregivers (Ped-PRO-CTCAE [Caregiver]). METHODS: Children age 7-18 years with a first cancer diagnosis, their clinicians, and caregivers completed CTCAE-based measures before starting a treatment course (T1) and after the treatment (T2). Grades (0-3) were assigned by each reporter for 15 core AEs spanning physical and mental health. Mean grades were compared between reporters using two-sample t-tests; agreement was estimated using weighted kappa (κ) statistics. Multivariable mixed regression models were used to evaluate associations of clinical factors with AE reporting concordance. Significance was set at α = .05 (two-sided). RESULTS: There were 438 child-clinician-caregiver triads with complete data at either T1 or T2. For children, the mean age was 13 years (standard deviation = 3.4), 53.7% were male, 32.6% non-White, and 56.4% had leukemia/lymphoma. At T1, clinician mean AE grades were significantly lower (ie, better) than children for all AEs and remained significantly lower at T2 except for constipation, nausea, anorexia, neuropathy, and anxiety. Caregiver mean AE grades were similar to children at T1 and significantly higher (ie, worse) at T2 for nausea, vomiting, anorexia, pain, fatigue, anxiety, and depression. Agreement for child-clinician grading was poor-to-fair at T1 (κ range, 0.08-0.34) and T2 (0.11-0.35), and for child-caregiver, was fair-to-good at T1 (0.34-0.65) and T2 (0.24-0.60). No factors were consistently associated with reporter concordance across AEs. CONCLUSION: Compared with children, symptomatic AEs were consistently under-reported by clinicians with low agreement and over-reported by caregivers with low-moderate agreement. Direct reporting by children using Ped-PRO-CTCAE or similar measures should be routinely incorporated for toxicity assessment in clinical trials.

Identifying clinical practice guidelines for symptom control in pediatric oncology.

BACKGROUND: Children with cancer commonly experience distressing symptoms such as pain, fatigue and nausea. Improvements in patient outcomes have been associated with implementation of clinical practice guideline-consistent care across several domains. The objective of this study was to develop a process to identify symptom management clinical practice guidelines (CPGs) applicable to children and adolescents receiving cancer treatments. METHODS: We focused on identifying CPGs to manage 15 symptoms. The process defined three Tiers of CPGs based upon applicability to pediatric cancer patients and ease of identification: Tier 1: endorsed by the Children's Oncology Group; Tier 2: housed in the Emergency Care Research Institute repository, or developed by the American Society of Clinical Oncology or National Institute for Health and Care Excellence; and Tier 3: identified by systematic review. We first searched for CPGs published 2015-2020 and identified Tiers 1 or 2 CPGs. If unavailable or scope was too narrow, we proceeded to Tier 3. If CPGs were not identified, we repeated these steps for CPGs published 2010-2014. RESULTS: There were six Tier 1 and 13 Tier 2 CPGs published 2015-2020 across the 15 symptoms. Four symptoms required progression to Tier 3 because CPGs were absent (anger) or because scope was too narrow (pain, anorexia/excessive hunger and diarrhea). The systematic review identified three CPGs for pain and none for the other three symptoms. In total, CPGs were identified for 14 of 15 symptoms. None were identified for anger. CONCLUSION: We created a process to identify supportive care CPGs for pediatric cancer symptom management and were able to identify CPGs that addressed 14 of 15 symptoms. Future work should focus on evaluating implementation techniques for these CPGs and determining the impact of these CPGs on provider and patient outcomes.

Reasons for disagreement between proxy-report and self-report rating of symptoms in children receiving cancer therapies.

PURPOSE: To qualitatively describe reasons for disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. METHODS: We enrolled child and parent dyads, who understood English and where children (4-18 years of age) were diagnosed with cancer or were hematopoietic stem cell transplantation (HSCT) recipients. Each child and parent separately reported symptoms using self-report or proxy-report Symptom Screening in Pediatrics Tool (SSPedi). We then used semi-structured interviews to elicit reasons for discrepancies in symptom reporting. RESULTS: We enrolled 12 dyads in each of four age cohorts, resulting in 48 dyads. Forty-one dyads (85.4%) had disagreement in rating the presence or absence of at least one symptom. Themes identified as reasons for disagreement included (1) perception, differing perception of symptom or availability or palatability of intervention; (2) understanding, difficulty orienting to time frame or concept of bother; (3) lack of communication, including child not acknowledging or talking about experiences; (4) projection, of how the parent felt or how they assumed the child would feel; and (5) discrepancy, in how the amount of symptom bother that was initially reported on SSPedi, by either child or parent, did not align with what was reported during the dyad discussion. CONCLUSION: We identified themes that explained disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. Some disagreement may be reduced by enhancing communication about symptom reporting between child and parent. Future research should focus on methods of symptom screening that encourage communication between children with cancer and their caregivers.

Feeling scared or worried self-report in children receiving cancer treatments using the Symptom Screening in Pediatrics Tool (SSPedi).

INTRODUCTION: The objectives of this study were to describe reports of bother for feeling scared or worried among children with cancer and pediatric hematopoietic stem cell transplant (HSCT) recipients, and to identify factors associated with it. METHODS: We included children receiving cancer treatments who were 8-18 years of age. Three patient types were enrolled: inpatients receiving active cancer treatment, outpatients receiving maintenance acute lymphoblastic leukemia chemotherapy, and outpatients in survivorship. Amount of bother due to feeling scared or worried yesterday or today was self-reported using the Symptom Screening in Pediatrics Tool (SSPedi) on a 0-4 scale. Risk factors were evaluated using logistic regression. RESULTS: Among the 502 children included, 225 (45.0%) reported any degree of bother (score ≥ 1) and 29 (5.8%) reported severe bother (score ≥ 3) for feeling scared or worried. In multiple regression evaluating any bother, boys were less likely to be bothered (odds ratio (OR) 0.60, 95% confidence interval (CI) 0.41-0.87) and inpatients receiving active cancer treatment were more likely to be bothered compared to outpatients in survivorship (OR 3.58, 95% CI 2.00-6.52). The only factor associated with being severely bothered by feeling scared or worried was clinic visit or admission due to fever (OR 4.57, 95% CI 1.24-13.60). DISCUSSION: We found 45% of children receiving cancer treatments reported being bothered by feeling scared or worried. Girls and inpatients receiving active treatment experienced more bother of any degree, while visiting the hospital due to fever was associated with being severely bothered. Future work should identify interventions to prevent or alleviate this symptom.

Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment.

Importance: Adult patients are considered the best reporters of their own health-related quality of life (HRQOL). Self-report in pediatrics has been challenged by a limited array of valid measures. Caregiver report is therefore often used as a proxy for child report. Objectives: To examine the degree of alignment between child and caregiver proxy report for Patient-Reported Outcomes Measurement Information System (PROMIS) HRQOL domains among children with cancer and to identify factors associated with better child and caregiver-proxy congruence. Design, Setting, and Participants: In this multicenter cohort study, children with a first cancer diagnosis and their caregivers completed surveys at 2 time points: within 72 hours preceding treatment initiation (T1) and during follow-up (T2), when symptom burden was expected to be higher (eg, 7-17 days later for chemotherapy). Data were collected from October 26, 2016, to October 5, 2018, at 9 pediatric oncology hospitals. Five hundred eighty children (aged 7-18 years) and their caregivers were approached; 482 child-caregiver dyads completed surveys at T1 (response rate 83%), and 403 completed surveys at T2 (84% of T1 participants). Data were analyzed from July 1, 2019, to April 22, 2020. Exposures: Participants received up-front cancer treatment, including chemotherapy and radiotherapy. Main Outcomes and Measures: Congruence between child self-report and caregiver-proxy report of PROMIS pediatric domains of mobility (physical functioning), pain interference, fatigue, depressive symptoms, anxiety, and psychological stress. Results: Of the 482 dyads included in the analysis, 262 children (54%) were male (mean [SD] age, 12.9 [3.4] years), 80 (17%) were Black, and 71 (15%) were Hispanic. Intraclass correlations between child self-report and caregiver proxy report showed moderate agreement for mobility (0.57 [95% CI, 0.50-0.63]) and poor agreement for symptoms (range, 0.32 [95% CI, 0.24-0.41] for fatigue to 0.42 [95% CI, 0.34-0.50] for psychological stress). Children reported lower symptom burden and higher mobility than caregivers reported. In a multivariable model adjusted for child and parent sociodemographic factors and the caregiver's own self-reported HRQOL, caregivers reported the child's mobility score 6.00 points worse than the child's self-report at T2 (95% CI, -7.45 to -4.51), exceeding the PROMIS minimally important difference of 3 points. Caregivers overestimated the child's self-reported symptom levels, ranging from 5.79 (95% CI, 3.99-7.60) points for psychological stress to 13.69 (95% CI, 11.60-15.78) points for fatigue. The caregiver's own self-reported HRQOL was associated with the magnitude of difference between child and caregiver scores for all domains except mobility; for example, for fatigue, the magnitude of difference between child and caregiver-proxy scores increased by 0.21 (95% CI, 0.13-0.30) points for each 1-point increase in the caregiver's own fatigue score. Conclusions and Relevance: This study found that caregivers consistently overestimated symptoms and underestimated mobility relative to the children themselves. These results suggest that elicitation of the child's own report should be pursued whenever possible.

Mindfulness-Based Interventions for Symptom Management in Children and Adolescents With Cancer: A Systematic Review.

Psychological interventions have shown benefit in reducing symptoms in children and adolescents with cancer. More recently, mindfulness-based interventions (MBIs) have been shown to be a promising approach to symptom intervention in adolescents with chronic illnesses. In this systematic review, we aimed to describe MBIs or focused-breathing interventions that have been used to treat symptoms in children receiving cancer therapy. A systematic review was conducted using MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO from inception to September 2019. We identified relevant articles in which MBIs or focused-breathing interventions were the primary interventions delivered to improve symptoms in children or adolescents with cancer. Six studies met the inclusion criteria. MBIs included controlled breathing and belly breathing. Intervention effects were found to be beneficial with regard to symptoms that included procedural pain, distress, and quality of life. The interventions were generally well accepted and beneficial. All studies suffered limitations because of methodological flaws, including the lack of randomization, and small sample sizes. Despite the small numbers of studies and participants, MBIs delivered to children with cancer may have beneficial effects on certain symptoms. Implications for future research include interventions tailored to the specific symptom burden. Studies must aim to increase sample sizes as well as to include individuals at high risk for severe symptoms.

Discordance between pediatric self-report and parent proxy-report symptom scores and creation of a dyad symptom screening tool (co-SSPedi).

Symptom Screening in Pediatrics Tool (SSPedi) (age 8-18 years) and mini-SSPedi (age 4-7 years) can be used to self-report and proxy-report bothersome symptoms in pediatric patients receiving cancer treatments. There are limitations of sole child self-report or proxy-report. An approach in which children and parents complete symptom reports together may be useful. The aim of our study was to describe discordance between child self-report and parent proxy-report symptom scores, and to determine how these scores compare to an approach in which reporting is performed together (co-SSPedi). Children and parents completed SSPedi or mini-SSPedi separately. Discordant symptoms were shared with respondents and discussed. Next, the dyad completed co-SSPedi together and were asked which approach they preferred. Discordance was evaluated for each symptom and was defined as a difference of at least 2 points on an ordinal scale ranging from 0 (not at all bothered) to 4 (extremely bothered). Of the 48 enrolled dyads (children, median age, 10.8 years; 54.2% male), 41 (85.4%) had discordance in at least one symptom. There was no clear pattern in discordance by age group. When a dyad approach was used, more co-SSPedi scores agreed with the original child self-report scores (59 dyads, 56.2%) compared to original parent proxy-report scores (15 dyads, 14.3%) for discordant symptoms. Forty-three (89.6%) dyads preferred to complete SSPedi together. Future work should evaluate the psychometric properties of co-SSPedi.

Changes in hunger among pediatric patients with cancer and hematopoietic stem cell transplantation recipients.

PURPOSE: Change in hunger is a common and bothersome symptom among pediatric patients receiving cancer treatments. Objectives were to describe how children and adolescents receiving cancer treatments experience changes in hunger, factors associated with both increases and decreases in hunger, and coping strategies used by these patients. METHODS: We enrolled children and adolescents 4-18 years of age with cancer or hematopoietic stem cell transplantation (HSCT) recipients who were actively receiving treatment or who had completed therapy. Using a single, qualitative, semi-structured interview, we asked participants about the experience of increases or decreases in hunger, including characteristics of the change and identified coping strategies. RESULTS: There were 50 children enrolled; 25 (50%) were 4-10 years of age and 33 (66%) were boys. Most often, patients associated an increase in hunger with corticosteroid administration, while other treatments, accompanying symptoms, inactivity, and the hospital environment were associated with a decrease in hunger. Many reported that no coping strategies were successful. For those who did report successful strategies to manage an increase in hunger, these included sleep and having food available. Strategies used to manage a decrease in hunger included anti-emetic medications, increased caloric intake, varied food choices, encouragement to eat, scheduling or tracking of meals, and physical activity. CONCLUSIONS: Both increases and decreases in hunger were commonly described. Some coping strategies were reported to be successful. Further research should identify and test interventions to manage changes in hunger in pediatric cancer patients.

Changes in taste among pediatric patients with cancer and hematopoietic stem cell transplantation recipients.

PURPOSE: Changes in taste is a common bothersome symptom in children receiving cancer treatments. However, little is known about how pediatric cancer patients experience this symptom. The objective was to describe how children receiving cancer treatments experience taste alterations and the approaches they use to address the issue. METHODS: In this qualitative study, we included English-speaking children 4-18 years of age with cancer or hematopoietic stem cell transplantation recipients who were actively receiving cancer treatment or who had completed therapy. Using a semi-structured questionnaire, we asked questions about the experience of altered taste sensation. We asked about its characteristics, impacts and identified coping strategies. RESULTS: We included 50 children. Children experienced changes in taste in a heterogeneous fashion although commonly described food as tasting "different", "not right" or "funny". While change in food preferences due to taste alterations was common, specific choices varied. Many found changes started with treatment initiation or mid-way through treatment, and some found that symptoms persisted up to 9 months following treatment completion. Actions taken to address taste changes were sucking on candy, brushing teeth and modifying food choices. CONCLUSIONS: The experience of changes in taste was common yet highly variable in its presentation and resultant changes in food preferences. Taste changes did not always resolve soon after treatment completion. Future research should identify ways to manage this symptom in pediatric cancer patients.

Optimizing symptom control in children and adolescents with cancer.

There is growing recognition of the degree to which symptoms negatively impact on children receiving cancer treatments. A recent study described that almost all inpatient pediatric oncology patients are experiencing at least one bothersome symptom and almost 60% are experiencing at least one severely bothersome symptom. Poor symptom control occurs because of challenges with communication of bothersome symptoms to clinicians, lack of clinical practice guidelines (CPGs) for most of these symptoms, and failure to administer preventative and therapeutic interventions known to be effective for symptom control. This article reviews approaches used to improve symptom control for children receiving cancer treatments. Areas addressed include systematic symptom screening and creation of CPGs for symptom management. Challenges with electronic health integration are also addressed. Several multi-symptom assessment scales have been developed but none have yet been used to directly influence patient management. The number of CPGs applicable to symptom control in pediatric oncology is increasing but remains small. Improving the creation of and adherence to CPGs for symptom management is an important priority. Finally, identifying ways that symptom management systems can be integrated into clinical work flows is essential; these will likely need to focus on electronic health records.