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Purpose: Children with cancer require specific therapeutic guidance. Parents prefer physical therapy close to home, while pediatric physical therapists (PPTs) working in the community may lack specific knowledge. The aim of this study is to determine the needs of parents of children with cancer and PPTs to inform the design and development of a care network, named "KinderOncoNet.", Methods: We explored the perspectives and needs of parents of children with cancer and PPTs in the community, and we investigated the added value that KinderOncoNet could offer. We used an iterative process; data collection consisted of (1) gathering information from parents of children with cancer and PPTs through a survey and (2) co-creation sessions with stakeholders., Results: In total, 98 parents and 177 PPTs participated in the survey. Parents (97%) and PPTs (93%) indicated that the care network would bring added value. All but one parent stressed the importance of a local PPT being aware of both the condition and the side and late effects of oncological treatment. Moreover, 40% of PPTs thought they do not have sufficient knowledge to provide high-quality therapy and that they would embrace opportunities for education. Through the co-creation sessions, a prototype of the care network was conceptualized., Conclusion: KinderOncoNet can contribute to the continuity and quality of physiotherapy care for children with cancer during and after the oncological treatment. Such a network would allow for sharing knowledge, developing skills, and improving accessibility and communication in the Netherlands., (© 2023. The Author(s).)

Purpose: We aimed to systematically identify and characterize existing digital health tools for pain monitoring in children with cancer, and to assess common barriers and facilitators of implementation., Methods: A comprehensive literature search (PubMed, Cochrane, Embase, and PsycINFO) was carried out to identify published research on mobile apps and wearable devices focusing on acute and/or chronic pain in children (0-18 years) with cancer (all diagnoses) during active treatment. Tools had to at least include a monitoring feature for one or more pain characteristic(s) (e.g., presence, severity, perceived cause interference with daily life). Project leaders of identified tools were invited for an interview on barriers and facilitators., Results: Of 121 potential publications, 33 met inclusion criteria, describing 14 tools. Two methods of delivery were used: apps (n=13), and a wearable wristband (n=1). Most publications focused on feasibility and acceptability. Results of interviews with project leaders (100% response rate), reveal that most barriers to implementation were identified in the organizational context (47% of barriers), with financial resources and insufficient time available mentioned most often. Most factors that facilitated implementation related to end users (56% of facilitators), with end-user cooperation and end-user satisfaction mentioned most often., Conclusions: Existing digital tools for pain in children with cancer were mostly apps directed at pain severity monitoring and little is still known about their effectiveness. Paying attention to common barriers and facilitators, especially taking into account realistic funding expectations and involving end users during early stages of new projects, might prevent evidence based interventions from ending up unused., (© 2023. The Author(s).)

Background: Studies about support needs of young adult childhood cancer survivors (YACCS) previously focused mainly on information needs. This study assessed support needs and associated factors (sociodemographic, medical, and psychosocial functioning) in Dutch YACCS., Methods: YACCS (aged 18-30, diagnosed ≤ 18 years, time since diagnosis ≥ 5 years) cross-sectionally filled out a questionnaire regarding their need for various types of support (concrete information, personal counseling, and peer contact) in eight domains (physical consequences of childhood cancer, social-emotional consequences, relationships and sexuality, fertility, lifestyle, school and work, future perspective, insurance and mortgage), and questionnaires assessing health-related quality of life (PedsQL-YA), anxiety and depression (HADS), and fatigue (CIS-20R). Descriptive statistics were used to describe support needs. Linear regression was used to identify characteristics associated with support needs., Results: One hundred fifty-one YACCS participated (response = 40%). Most YACCS reported a need for support in one or more domains (88.0%, N = 133). More than half of the participants reported a need for concrete information in the domains lifestyle, fertility, and physical consequences of childhood cancer and 25-50% in the domains insurance and mortgages, future perspective, and social-emotional consequences of childhood cancer. In the domains lifestyle and physical as well as emotional consequences of childhood cancer, 25-50% reported a need for counseling. Overall need for support was positively associated with middle (β = 0.26, p = 0.024) and high (β = 0.35, p = 0.014) compared to low educational attainment and (sub)clinical anxiety (β = 0.22, p = 0.017), and negatively associated with social functioning (β =  - 0.37, p = 0.002) in multivariate analyses., Conclusion: YACCS report the strongest need for support, for concrete information, in the domains lifestyle, fertility, and physical consequences of childhood cancer. Associated factors were mostly socioeconomic and psychosocial in nature. Psychosocial care should be an integral part of survivorship care for YACCS, with screening for psychosocial problems, information provision including associated emotional consequences and support if necessary (psycho-education) and tailored interventions, and adequate referrals to more specialized care if necessary., (© 2021. The Author(s).)

Purpose: This study aimed to increase our understanding of the psychosocial well-being of young adult childhood cancer survivors (YACCS) as well as the positive and negative impacts of cancer., Methods: YACCS (aged 18-30, diagnosed ≤ 18, time since diagnosis ≥ 5 years) cross-sectionally filled out the "Pediatric Quality of Life Inventory Young Adults" (PedsQL-YA), "Hospital Anxiety and Depression Scale" (HADS), and "Checklist Individual Strengths" (CIS-20R) to measure fatigue and survivor-specific "Impact of Cancer - Childhood Survivors" (IOC-CS), which measures the long-term impact of childhood cancer in several domains. Descriptive statistics (IOC-CS), logistic regression (HADS, CIS-20R), and ANOVA (PedsQL-YA, HADS, CIS-20R) were performed. Associations between positive and negative impacts of childhood cancer and psychosocial outcomes were examined with linear regression analyses., Results: YACCS (N = 151, 61.6% female, mean age 24.1 ± 3.6, mean time since diagnosis 13.6 ± 3.8) reported lower HRQOL (- .4 ≤ d ≤ - .5, p ≤ .001) and more anxiety (d = .4, p ≤ .001), depression (d = .4, p ≤ .01), and fatigue (.3 ≤ d ≤ .5, p ≤ .001) than young adults from the general Dutch population. They were at an increased risk of experiencing (sub)clinical anxiety (OR = 1.8, p = .017). YACCS reported more impact on scales representing a positive rather than negative impact of CC. Various domains of impact of childhood cancer were related to psychosocial outcomes, especially "Life Challenges" (HRQOL β = - .18, anxiety β = .36, depression β = .29) and "Body & Health" (HRQOL β = .27, anxiety β = - .25, depression β = - .26, fatigue β = - .47)., Conclusion: YACCS are vulnerable to psychosocial difficulties, but they also experience positive long-term impacts of childhood cancer. Positive and negative impacts of childhood cancer were associated with psychosocial outcomes in YACCS. Screening of psychosocial outcomes and offering targeted interventions are necessary to optimize psychosocial long-term follow-up care for YACCS.

Purpose: To assess the impact of maintenance therapy and the additional impact of dexamethasone treatment on cancer-related fatigue and sleep-wake rhythms in pediatric acute lymphoblastic leukemia (ALL) patients and to determine the association between these outcomes., Methods: A national cohort of pediatric ALL patients (≥ 2 years) was included (± 1 year post-diagnosis). Patients receiving dexamethasone were assessed twice (assessment with and without dexamethasone). Actigraphy assessments were used to calculate sleep-wake outcomes with nonparametric methods. Cancer-related fatigue was assessed with the PedsQL Multidimensional Fatigue Scale. Sleep-wake rhythms and cancer-related fatigue were compared between patients participating in the assessment without dexamethasone and healthy children (linear regression) and between assessments with and without dexamethasone (mixed models). Using linear regression, associations between sleep-wake outcomes and cancer-related fatigue were determined during assessments with and without dexamethasone., Results: Responses were collected for 125 patients (113 assessments with and 81 without dexamethasone). The sleep-wake rhythm was less stable (p = 0.03) and less robust (p = 0.01), with lower physical activity levels (p < 0.001) and higher cancer-related fatigue levels (p < 0.001) in ALL patients compared to healthy children. Physical activity was lower (p = 0.001) and cancer-related fatigue more severe (p ≤ 0.001) during assessments with dexamethasone compared to without dexamethasone. Sleep-wake outcomes were significantly associated with cancer-related fatigue during periods without dexamethasone, but not during periods with dexamethasone., Conclusion: Sleep-wake rhythms are disturbed, physical activity levels lower, and cancer-related fatigue levels higher during maintenance therapy. Interventions aimed to enhance sleep-wake rhythms during maintenance therapy could improve cancer-related fatigue. Families should be supported in coping with the additional burden of dexamethasone treatment to improve well-being of ALL patients.

Purpose: Children with acute lymphoblastic leukemia (ALL) are at increased risk of vitamin D deficiency, which might make them more susceptible to developing adverse events. Previous studies showed that low vitamin D levels were associated with an increased inflammatory mucosal state and impaired mucosal tissue barriers. We examined the prevalence of vitamin D deficiency and studied the association between vitamin D levels and methotrexate (MTX)-induced oral mucositis in pediatric ALL., Methods: We assessed 25-hydroxyvitamin D (25(OH)D 3 ) and 24,25-dihydroxyvitamin D (24,25(OH) 2 D 3 ) levels in 99 children with ALL before the start of 4 × 5 g/m 2 high-dose methotrexate (HD-MTX) (T0) and in 81/99 children after discontinuation of HD-MTX (T1). Two cutoff values for vitamin D deficiency exist: 25(OH)D 3 levels < 30 and < 50 nmol/L. Oral mucositis was defined as grade ≥ 3 according to the National Cancer Institute Criteria., Results: Vitamin D deficiency occurred in respectively 8% (< 30 nmol/L) and 33% (< 50 nmol/L) of the patients at T0, and more frequently in children > 4 years of age as compared to children between 1 and 4 years of age. A decrease in 25(OH)D 3 levels during HD-MTX therapy was associated with developing severe oral mucositis (OR 1.6; 95% CI [1.1-2.4]). 25(OH)D 3 and 24,25(OH) 2 D 3 levels at T0 and the change in 24,25(OH) 2 D 3 levels during therapy were not associated with the development of severe oral mucositis., Conclusions: This study showed that vitamin D deficiency occurs frequently in pediatric ALL patients above the age of 4 years. A decrease in 25(OH)D 3 levels during MTX therapy was observed in children with ALL that developed severe oral mucositis.

Purpose: Intensive therapies in pediatric malignancies increased survival rates but also occurrence of treatment-related morbidities. Therefore, supportive care fulfills an increasingly important role. In planning development of guidelines with incorporation of shared decision making, we noticed that little is known about the needs and preferences of patients and their parents. Our goals were therefore to investigate (1) which supportive care topics patients and parents regard as most important and (2) the preferred role they wish to fulfill in decision making., Methods: This qualitative study consisted of three focus groups (two traditional, one online) with patients and parents of two Dutch pediatric oncology centers. Data were transcribed as simple verbatim and analyzed using thematic analysis., Results: Eleven adolescent patients and 18 parents shared detailed views on various aspects of supportive care. Themes of major importance were communication between patient and physician (commitment, accessibility, proactive attitude of physicians), well-timed provision of information, and the suitability and accessibility of psychosocial care. In contrast to prioritized supportive care topics by medical professionals, somatic issues (e.g., febrile neutropenia) were infrequently addressed. Patients and parents preferred to be actively involved in decision making in selected topics, such as choice of analgesics and anti-emetics, but not in, e.g., choice of antibiotics., Conclusions: Children with cancer and parents were provided a valuable insight into their views regarding supportive care and shared decision making. These results have important implications towards improving supportive care, both in selecting topics for guideline development and incorporating preferences of patients and parents herein.

As cure rates in pediatric oncology have improved substantially over the last decades, supportive care has become increasingly important to reduce morbidity and mortality and improve quality of life in children with cancer. Currently, large variations exist in pediatric oncology supportive care practice, which might negatively influence care. This plea underlines the importance of development and implementation of trustworthy supportive care clinical practice guidelines, which we believe is the essential next step towards better supportive care practice, and thus a higher quality of care. To facilitate international development and endorsement, the International Pediatric Oncology Guidelines in Supportive Care Network has been established.

Introduction: Currently, very few guidelines for supportive care for children with cancer exist. In the Netherlands, nationwide guidelines are over 10 years old and mostly based on expert opinion. Consequently, there is growing support and need for clinical practice guidelines (CPGs), which ought to be developed with a well-defined methodology and include a systematic search of literature, evidence summaries, and a transparent description of the decision process for the final recommendations. Development of CPGs is time consuming; therefore, it is important to prioritize topics for which there is the greatest clinical demand., Objectives: This study aims to prioritize childhood cancer supportive care topics for development of CPGs., Methods: A Delphi survey consisting of two rounds was conducted to prioritize relevant childhood cancer supportive care topics for the development of CPGs. A group of experts comprising 15 pediatric oncologists, 15 pediatric oncology nurses, and 15 general pediatricians involved in care for childhood cancer patients were invited to participate. All relevant supportive care topics in childhood cancer were rated., Results: In both rounds, 36 panellists (82%) responded. Agreement between panellists was very good, with an intraclass correlation coefficient of 0.918 (95% confidence interval (CI) = 0.849-0.966, p < 0.001) in round 2. The ten topics with the highest score in the final round were infection, sepsis, febrile neutropenia, pain, nausea/vomiting, restrictions in daily life and activities, palliative care, procedural sedation, terminal care, and oral mucositis., Conclusion: We successfully used a Delphi survey to prioritize childhood cancer supportive care topics for the development of CPGs. This is a first step towards uniform and evidence-based Dutch guidelines in supportive care in childhood cancer. Even though performed nationally, we believe that this study can also be regarded as an example starting point for international development of CPGs in the field of supportive care in cancer or any other field for that matter.

Purpose: In childhood cancer patients, malnutrition has been proposed to increase infection rates and reduce survival. We investigated whether malnutrition at diagnosis and during treatment and weight loss during treatment are prognostic factors for infection rates and survival, within a heterogeneous childhood cancer population., Methods: From two previous studies, all children ≤18 years of age diagnosed with cancer between October 2004 and October 2011 were included in this study. Data regarding BMI, infections, and survival were retrieved. Patients with a BMI z-score lower than -2.0 were classified as malnourished. Weight loss more than 5% was considered relevant., Results: Two hundred sixty-nine childhood cancer patients were included in this study. At diagnosis, 5.2% of all patients were malnourished. These patients showed worse survival than those who were well nourished (hazard ratio (HR) = 3.63, 95% confidence interval (CI) = 1.52-8.70, p = 0.004). Malnourishment at 3 months after diagnosis (3.3% of all patients) also showed worse survival (HR = 6.34, 95% CI = 2.42-16.65, p < 0.001). Weight loss of more than 5% in the first 3 months after diagnosis was related to increased occurrence of febrile neutropenic episodes with bacteremia in the first year after diagnosis (odds ratio (OR) = 3.05, 95 % CI = 1.27-7.30, p = 0.012)., Conclusion: We found that malnourishment in the initial phase of therapy is associated with worse survival in childhood cancer patients. In addition, we found for the first time that weight loss during treatment is associated with increased presence of febrile neutropenic episodes with bacteremia. This underlines the importance of optimal feeding designs in childhood cancer patients.

Purpose: Treatment protocols in pediatric oncology have historically known high accrual rates, up to 94 %. Accrual for supportive care studies on the other hand appears to be a challenge. The aim of this study was to search for reasons explaining this poor accrual and for possible interventions to improve patient enrolment., Methods: The failure screen log of our supportive care study (the Aristocaths study) was analyzed, and subsequently, a literature search was performed., Results: The literature search (1985-2011) revealed three factors that can influence accrual. Firstly, study implementation and patient enrolment can be facilitated by appointing a dedicated clinical investigator in all participating centers and by facilitating clinical research nurses. Furthermore, adequate and tailor-made information is required for families to make a well-informed decision regarding study participation. Lastly, sufficient time should be assured for the process of decision making, especially since the number of eligible studies is increasing rapidly. Concerning our study, all three elements were met, but the most striking finding was the presumed burden of study participation by the majority of parents (82 %) as the main argument against randomization., Conclusions: Accrual of pediatric oncology patients in supportive care studies is challenging. Nevertheless, well-designed randomized controlled trials in supportive care will be essential for the improvement of pediatric cancer care. Therefore, we will need to increase awareness through (inter)national supportive care working groups regarding the need for supportive care trials and stimulate accrual when such trials are open.

Purpose: Evaluation of body mass index (BMI) at final height (FH) and annual BMI increase in adult childhood cancer survivors (CCS) after treatment with anthracyclines, platinum, and/or radiotherapy., Methods: BMI (weight/height²) was calculated retrospectively from diagnosis until FH. The prevalence of underweight (BMI < 18.5 kg/m(2)) and overweight (BMI ≥ 25 kg/m(2))/obesity (BMI ≥ 30 kg/m(2)) at FH was compared with age-matched controls. The association between underweight/overweight at FH and treatment was assessed by multivariate logistic regression. Annual BMI increase after treatment was assessed by multilevel analysis. Analyses were adjusted for age and underweight/overweight at diagnosis, and age at FH., Results: At FH the prevalence of overweight had not increased, while CCS experienced more underweight as compared to controls (14% vs. 4%, P < 0.001). Overweight at FH was associated with cranial/craniospinal radiotherapy (CRT; OR, 2.23; 95% CI, 1.17-4.26) and underweight at FH with anthracyclines > 300 mg/m(2) (OR, 2.84; 95% CI, 1.33-6.06). Annual BMI increase was +0.47 (0.34-0.60) kg/m(2)/year. In CCS, the annual BMI increase was greater in those with CRT ≥ 30 Gy as compared with those with less or no CRT (+0.15 kg/m(2)/year [0.04-0.25 kg/m(2)/year], P = 0.008) and smaller in those with a higher cumulative anthracycline dose (-0.03 kg/m(2)/year [-0.05 to -0.0005 kg/m(2)/year] per 100 mg/m(2), P = 0.046)., Conclusions: After treatment with anthracyclines, platinum, and/or radiotherapy, CRT-treated survivors have more overweight at FH, and a greater annual BMI increase, while anthracycline-treated survivors have more underweight at FH and a lower annual BMI increase.