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Purpose This study assessed adherence to, feasibility of, and barriers and facilitators of implementation of an app developed to monitor and follow-up with pain in children with cancer at home. Methods Children (8–18 years) receiving cancer treatment (all diagnoses) or their parents (of children aged 0–7 years) used the KLIK Pain Monitor app for 3 weeks. Pain was assessed twice daily using an 11-point numeric rating scale (NRS-11) (ranging from 0 to 10). Healthcare professionals (HCP’s) from the hospital’s Pediatric Pain Service were instructed to follow-up with clinically significant pain scores (≥ 4) within 120 min (scores 4–6) or 30 min (scores 7–10). Adherence, feasibility, and implementation outcomes were assessed using questionnaires, app log data, and interviews. Results Twenty-seven children (M age = 7.3 years, 51.8% male) and six HCP’s participated. Sixty-three percent (N = 17) of families used the app on a daily basis during three weeks, and 18.5% (N = 5) reported pain scores twice daily during that time (family adherence). Twelve out of 27 children (44.4%) reported a clinically significant pain score at least once. In 70% (14/20) of clinically significant pain scores, HCP’s followed-up with families within the set timeframe (HCP adherence). Outcomes reveal feasibility for the majority of app functions (i.e., positive evaluation by ≥ 70% families/HCP’s), and non-feasible aspects could be resolved. Identified barriers and facilitators were used to improve future implementation efforts. Conclusion Use of the KLIK Pain Monitor app seems feasible. Future research will determine its effectiveness in reducing pain in children with cancer at home.

BACKGROUND Pain is one of the most common and distressing symptoms during childhood cancer treatment, yet pain management is still suboptimal in the home setting. Over the past years, there has been an increase in the amount of digital health tools that have been developed to monitor pain in this population, with the ultimate goal of improving pain management and reducing pain. However, literature about these tools’ effectiveness is scarce. Moreover, in order to successfully implement these tools in practice, identification of determinants that might slow down (‘barriers’) or facilitate (‘facilitators’) future implementation is necessary. OBJECTIVE We aimed to systematically identify and characterize existing digital tools for pain monitoring in children with cancer, and to assess common barriers and facilitators of implementation to serve future digital health researchers and implementers. METHODS A comprehensive literature search (PubMed, Cochrane, Embase, and PsycINFO) was carried out to identify published research on digital tools focusing on acute and/or chronic pain in children (0-18 y) 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). Based on published research on each tool, we extracted the following data: method of delivery, features, end-users and findings of each publication. Project leaders of identified tools were invited for an interview on barriers and facilitators. RESULTS Of 115 potential publications, 27 met inclusion criteria, describing 13 digital tools. Three methods of delivery were used: apps (n=11), a web-portal (n=1), and a wearable wristband (n=1). Features included: monitoring of one or more pain characteristic(s), with ‘severity’ being the most common (used in 100% of tools), providing information about pain(treatment) (38.5%), communication options (61.5%), and use of game elements (30.8%). One tool could only be used during hospitalization (7.7%), five tools were meant for an outpatient setting (38.5%), and seven tools were available for in- as well as outpatients (53.8%). Most publications focused on feasibility and acceptability, and little is still known about effectiveness. 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 facilitators were connected 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. Preliminary results on effectiveness seem promising, yet more research is needed. 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 good interventions from ending up unused and decrease research waste.

Purpose Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers’ reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress). Methods Both parents completed the PedsQL generic (child’s HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland–Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis. Results Parents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65–0.83). Bland–Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL. Conclusions If proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent’s sex is not of major importance, but clinicians should be aware of patient’s and family’s characteristics.

Objective Little is known about relations between domains of psychosocial risk among pediatric cancer populations. The Psychosocial Assessment Tool 2.0 (PAT2.0) is one internationally validated screening measure that can examine these relations. This study aimed to examine risk profiles and predictors of these patterns exhibited by American and Dutch families. Methods Caregivers of children newly diagnosed with cancer (N = 262; nUSA=145, nNL=117) completed the PAT2.0 as part of larger studies conducted in the United States and the Netherlands. Latent profile analysis and multinomial logistic regression examined differences in demographic and medical variables across risk profiles. Domains assessed included Family Structure/Resources, Child Problems, Sibling Problems, Family Problems, Caregiver Stress Reactions, and Family Beliefs. Results Four groups were identified: “Low-Risk” (n = 162) defined by generally low risk across domains; “Moderate-Caregiver” (n = 55) defined by elevated Caregiver Stress Reactions domain; “Moderate-Children” (n = 25) defined by elevated Child Problems and/or Sibling Problems, and “Elevated-Risk” (n = 20) marked by generally high overall risk. Dutch families had higher odds of being in the Elevated-Risk group, compared to the Low-Risk group. Caregiver age, gender, and educational attainment predicted group membership. Families classified as Targeted or Clinical had higher odds of being in the Moderate or Elevated risk groups. Conclusion The PAT2.0 appears to identify largely similar patterns of risk, suggesting that families experience common psychosocial difficulties in both American and Dutch societies. The two Moderate groups demonstrated specific risk sources, suggesting that evaluation of domain patterns, rather than reliance on PAT2.0 risk level, could be of clinical benefit.

Objectives Aims were to (1) determine whether the associations between parent psychological functioning and adjustment outcomes of childhood cancer survivors (CCS) were mediated by the parent-child relationship and (2) examine possible differences in pathways for CCS and healthy peers. Method The study included CCS (n = 206), healthy peers (n = 132), and their primary caregivers. Youth (8-21 years) reported on the quality of the parent-child relationship and on their positive and negative adjustment outcomes. Parents reported on their own distress, posttraumatic growth, quality of the parent-child relationship, and their child's positive and negative adjustment outcomes. Two mediation models were tested, first examining youth-reported adjustment as the outcome and second examining parent-reported youth adjustment. Differences between model path coefficients of CCS and healthy peers were assessed by multigroup analyses. Results In the youth-reported model, the parent-child relationship mediated the relation between parental distress and adjustment, with more care leading to better youth-reported adjustment outcomes and more overprotection leading to poorer adjustment outcomes. In the parent-reported model, relational frustration and attachment mediated the link between parental distress/growth and parent-reported youth adjustment, with more relational frustration and less attachment relating to poorer youth adjustment outcomes. Multigroup analyses revealed no differences in model path coefficients between CCS and healthy peers. Conclusions Parental distress and the parent-child relationship likely play an important role in both youth- and parent-reported adjustment, and associations among these constructs do not differ between CCS and healthy peers. Families with less optimal parental functioning may benefit from interventions improving the quality of parent-child interactions.

PURPOSE: Having a child diagnosed with cancer may have a long-term impact on parenting practices. The aims of this study were to (a) examine possible differences in youth and parent perceptions of parenting between childhood cancer survivors and healthy comparisons, (b) determine the concordance between youth and parent perceptions of parenting, and (c) explore differences in parent-youth concordance between survivors and healthy comparisons. METHODS: Participants were youth aged 8–18 years (N=170 childhood cancer survivors, N=114 healthy comparisons), and one of their parents. All patients were ≥ 3 years from diagnosis (M=6.52, SD=3.60). Both youth (Parental Bonding Instrument (PBI)) and parents (Parenting Relationship Questionnaire (PRQ)) reported on their perceptions of parenting. Two separate MANCOVA’s (PBI and PRQ) were conducted to determine possible differences between childhood cancer survivors and healthy peers. Concordance between youth and parent perceptions of parenting was examined. RESULTS: Survivors did not differ from healthy peers in their perception of parental care and overprotection (p = .890). Likewise, parents in the survivor and healthy peer groups did not differ in their perceptions of involvement, attachment, communication, confidence, or relational frustration (p = .360). Youth’s report of a caring parent-child relationship was positively associated with parent-reported involvement, attachment, communication, and parenting confidence, and negatively associated with parent-reported relational frustration. Youth perceived overprotection was positively associated with parent-reported relational frustration. No differences were found in parent-youth concordance between survivors and healthy comparisons. CONCLUSION: A history of childhood cancer does not appear to adversely influence parenting behavior, as perceived by both youth and their parents.

Objective To examine individual differences in pediatric cancer survivors' psychosocial adjustment and test the psychosocial predictors, assessed 2-3 years earlier, of those differences. Method Pediatric cancer survivors (n = 209, aged 8-17 years at baseline) and their parents were followed for 4 years. They provided reports of survivors' psychosocial adjustment at 3 years post-baseline, and latent profile analysis (LPA) was used to identify subgroups of survivors who differed on those reports. Multinomial logistic regression was used to predict group membership from self- and parent-reported psychosocial factors at baseline (child adjustment, disposition, and parental functioning) and at 1 year post-baseline (child social relations). Results The LPA revealed a 3-class model as the best fit: a "Resilient" group (65%), characterized by good psychosocial adjustment; a "Self-Reported At-Risk" group (23%), characterized by subclinical elevations in self-reported internalizing and attention problems; and a "Parent-Reported At-Risk" group (12%), characterized by subclinical elevations in parent-reported internalizing, externalizing, and attention problems and in self-reported attention problems. Several psychosocial predictors, including child posttraumatic stress, affectivity, and connectedness to school, as well as parental distress and overprotection, differentiated the Resilient group from the other groups, in expected directions. Conclusions The majority of pediatric cancer survivors exhibit enduring resilience. The protective factors identified for them-including positive affectivity and strong connectedness to school-may inform targeted prevention strategies for the minority of survivors who are at risk for maladjustment.

BACKGROUND This study was aimed at assessing fathers' and mothers' distress 6 months after a pediatric cancer diagnosis and at determining whether this is related to the level of family psychosocial risk 1 month after the diagnosis. METHODS A sample of 192 families completed the electronic Psychosocial Assessment Tool (ePAT) 1 month after the diagnosis. At 6 months after the diagnosis, 119 mothers and 98 fathers completed the Distress Thermometer for Parents (DT-P; of which n=132 had also completed the ePAT at baseline). The DT-P consists of a thermometer score ranging from 0 to 10 (with a score ≥ 4 indicating clinical distress), problem domains (total, practical, social, emotional, physical, cognitive, and parenting for children < 2 years old and for children ≥ 2 years old), and a desire for a referral. The DT-P scores of mothers and fathers were compared with the scores of a reference group of 671 mothers and 463 fathers with healthy children. Within the pediatric cancer group, the DT-P scores of families with elevated total ePAT-scores were compared with the DT-P scores of parents with universal ePAT scores. RESULTS Parents of children with cancer more often reported clinical distress on the DT-P than parents of healthy children (fathers, 59.2% vs 32.3%; P < .001; mothers, 63% vs 42.3%; P < .001) and reported more problems on all DT-P domains (P < .001 to P = .042) except for the parenting domain for children < 2 years old. Furthermore, the ePAT predicted parental distress 6 months after the diagnosis because parents with elevated ePAT scores reported more problems than parents with universal scores on the DT-P thermometer and most of the DT-P domains (P < .001 to P = 1.00). CONCLUSIONS Initial ePAT risk scores at diagnosis are predictive of future mean levels of parental distress. Cancer 2017. © 2017 American Cancer Society.

Background: Pain is a common symptom in childhood cancer. Since children spend more time at home, families are increasingly responsible for pain management. This study aimed at assessing pain at home. Procedure: In this longitudinal observational study (April 2016-January 2017), pain severity and prevalence, analgesic use, and pain interference with daily life (Brief Pain Inventory Short Form) were assessed for 4 consecutive days around the time of multiple chemotherapy appointments. Descriptive statistics (frequencies and percentages) were used to report pain severity (with clinically significant pain defined as: score ≥ 4 on “worst pain” or “average pain in the last 24 h”), pain prevalence, and analgesic use. Mixed models were estimated to assess whether patient characteristics were associated with pain severity, and whether pain severity was associated with interference with daily life. Results: Seventy-three children (50.7% male) participated (1-18 years). A majority (N = 57, 78%) experienced clinically significant pain at least once, and 30% reported clinically significant pain at least half the time. In 33.6% of scores ≥ 4, no medication was used. We found an association between pain severity and interference with daily life: the higher the pain, the bigger the interference (estimated regression coefficient = 1.01 [95% CI 0.98-1.13]). Conclusions: The majority of children experienced clinically significant pain at home, and families frequently indicated no medication use. A stronger focus on education and coaching of families seems essential, as well as routine screening for pain in the home setting.

Background: Bright IDEAS (BI) problem-solving skills training is an evidence-based intervention designed to help parents manage the demands of caring for a child with cancer. However, the resource intensiveness of this in-person intervention has limited its widespread delivery. We conducted a multicenter, randomized trial with a noninferiority design to evaluate whether a web-based version of BI requiring fewer resources is noninferior to in-person administration. Methods: 621 caregivers of children with newly diagnosed cancer were randomly assigned to standard BI delivered in 8 face-to-face sessions or a web-based version delivered via mobile device supplemented with human support. The primary outcome was caregiver-reported problem-solving skills. The noninferiority margin was defined as 0.2 standard deviation units of the change from baseline to end of intervention. Secondary outcomes included caregiver-reported mood disturbance, depression, and posttraumatic stress symptoms. Findings: The effect of the standard treatment was preserved; parents in the standard BI arm improved their problem-solving (effect size = 0.53, t = 8.88, p 60% of the standard intervention effect on all secondary outcomes; however, tests of noninferiority were non-significant. Interpretation: Noninferiority of web-based BI relative to standard face-to-face administration was not established. Further development of the web-based BI is needed before it can be recommended as a stand-alone intervention. However, the documented benefits of the web-based intervention as well as the advantages of low resource utilization and ease of delivery suggest that further development of web-based BI is indicated, and that it may play a valuable role in alleviating distress in caregivers of children with serious or chronic illness. Trial Registration: ClinicalTrials.gov Identifier: NCT01711944 Funding Statement: The study reported was funded by the National Cancer Institute (U.S.), Grant #: R01 CA159013. Declaration of Interests: None of the authors have any conflicts of interest to report. Ethics Approval Statement: Institutional Review Board approval was obtained at all participating sites and participants provided written informed consent.

Objective A new cancer diagnosis leads to many daily changes in the lives of youth. We aimed to determine how short-term emotion dynamics relate to psychosocial adjustment over time in youth with newly diagnosed cancer and healthy peers. Methods Youth with newly diagnosed cancer (n = 71, weeks since diagnosis: M = 6.56, SD = 1.94) and age-matched controls (n = 63), aged 8-17 years, reported on their daily mood across the week (T1). Two to 4 months later (T2), youth reported on perceived parental care and overprotection, anxiety, and quality of life. Primary caregivers reported on youth's externalizing and internalizing problems and on parental distress. Latent profile analysis (LPA) was conducted to identify individual daily mood profiles at T1. These profiles were used to predict adjustment at T2, controlling for sociodemographic factors and looking at differences between cancer patients and comparisons. Results LPA revealed 4 daily mood profiles: stable positive mood (SPM, 61.6%), stable negative mood (SNM, 4.8%), intermediate mood (27.6%), and fluctuating negative mood (FNM, 6%). No sociodemographic or cancer/comparison differences were found across mood profiles. Results showed several relations between mood profiles across the week and adjustment outcomes at T2. Overall, a SPM related to favorable adjustment outcomes, whereas a SNM related to less favorable adjustment. Compared to an FNM, SNM demonstrated less youth-reported perceived parental care (p = .02) and higher youth-reported anxiety (p = .05). Conclusions Most children show healthy emotions during treatment for cancer. Close monitoring of mood during treatment is important to identify youth at risk for adverse psychosocial adjustment outcomes over time. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

The Psychosocial Assessment Tool (PAT) is a brief family screener, identifying families at universal or elevated risk for psychosocial problems. This study aimed to determine the feasibility and usability of the electronic PAT (ePAT) in pediatric cancer care. Eighty-six parents of newly diagnosed children with cancer (0–18 years) agreed to participate and registered at the website www.hetklikt.nu (58%). Seventy-five families completed the ePAT at approximately 1 month post-diagnosis. Answers were transformed into an electronic PROfile (PAT ePROfile) and fed back to the psychosocial team. Team members completed a semi-structured evaluation questionnaire. Feasibility was measured as the percentage of website registrations, completed ePATs, and PAT ePROfiles reviewed or discussed by the team. Usability included perceived match of the PAT ePROfile with the team’s own risk estimation, perceived added value, and perceived actions undertaken as a result of the PAT ePROfile. Feasibility was 70% for website registration, 87% for completed ePATs, 85% for PAT ePROfile reviewing, and 67% for ePROfile discussion. Team members reported that the PAT ePROfile matched with their own risk estimation (M = 7.92, SD = 1.88) and did not provide additional information (M = 2.18, SD = 2.30). According to the team, actions were undertaken for 25% of the families as a result of the PAT ePROfile. More actions were undertaken for families with elevated risk scores compared to universal risk scores (p = .007). Implementation of the ePAT seems generally feasible, but it is not always clear how this screener adds to current clinical practice. Strategies should be developed together with team members to improve quick exchange of ePAT results and allocate care according to the needs of the families.

Purpose The aim of this study was to provide Dutch normative data for the Distress Thermometer for Parents (DT-P) and to assess internal consistency and known-groups validity. Methods A sample of 1421 parents (60.7 % mothers), representative of the Dutch population, completed online sociodemographic questionnaire and the DT-P, which includes a thermometer (0 (no distress) to 10 (extreme distress), ≥4 clinically elevated distress) and everyday problems across six problem domains (practical, social, emotional, physical, cognitive, and parenting). Internal consistency was calculated using Cronbach’s alphas. Known-groups validity was assessed by comparing parents of a child with a chronic condition (N = 287, 20.2 %) with parents of healthy children, using Mann–Whitney U tests and Chi-square tests. Results The DT-P showed acceptable internal consistency (Cronbach’s alphas = .52–.89). Parents of a child with a chronic condition more often reported clinically elevated distress than parents of healthy children (53.0 versus 38.2 %, p

OBJECTIVE: The KLIK method is an online tool that monitors and discusses electronic patient-reported outcomes (ePROs), which has been shown to enhance outcomes. This study aimed (1) to determine the fidelity (ie, extent to which used as intended) of the KLIK method as implemented in outpatient pediatric cancer care and (2) to study health care professional (HCP)-reported barriers and facilitators for implementation. METHODS: Two hundred five children with newly diagnosed cancer (enrollment rate 85%) participated. At 1 (T1), 3 (T2), and 6 (T3) months after diagnosis, patients (8-18 years) or parents (of patients 0-7 years) completed health-related quality of life (HRQoL) questionnaires, which were transformed into an ePROfile and discussed by their HCP during consultations. Fidelity was determined by the following: percentage of website registrations, HRQoL questionnaires completed, and ePROfiles discussed. Implementation determinants were assessed with HCPs after the final T3 with the Measurement Instrument for Determinants of Innovations. RESULTS: Depending on the time point (T1-T3), fidelity was 86% to 89% for website registration, 66-85% for completed HRQoL questionnaires, and 56% to 62% for ePROfile discussion. Barriers were mainly related to organizational issues (eg, organizational change) and less frequently to users (eg, motivation to comply) or the intervention (compatibility). Facilitators were related to the user (eg, positive outcome expectations) and intervention (simplicity) but not to the organization. CONCLUSIONS: When implementing ePROs in outpatient pediatric oncology practice, HCPs report determinants that influence ePRO integration. To improve implementation and outcomes, tailored organizational (eg, formal ratification by management and time) and specific local (eg, individualized assessments) strategies should be developed to achieve optimal ePRO discussion.

Objective The present study aimed to examine the relationship of optimism and connectedness with psychological adjustment outcomes in children with cancer and determine whether these relations differ for children with cancer and comparison peers. Methods Participants were 155 children with cancer and 143 comparison youth without a history of cancer, aged 8 to 17 years at study entry, who were followed longitudinally over a 3-year period. Participants completed self-report measures at 3 time points: baseline optimism at study entry (T1), connectedness at 1 year after baseline (T2), and emotional symptoms at 3 years after baseline (T3). A series of regression analyses were conducted using conditional process analysis to examine whether connectedness mediated the relationship between optimism and psychological adjustment and whether this was moderated by health status (i.e., history of childhood cancer vs no history of cancer or other serious or chronic illness). Results Connectedness to parents, peers, and friends significantly mediated the relationship between optimism and psychological adjustment (b parents = -0.1387, 95% confidence interval [CI] [-0.2341 to -0.0515]; b peers = -0.2021, 95% CI [-0.3575 to -0.0818]; b friends = -0.0703, 95% CI [-0.1640 to -0.0050]). However, this mediation was not significantly moderated by having a history of cancer. Cancer history did moderate the direct relationship between optimism and psychological adjustment and between connectedness to parents and psychological adjustment. Conclusion Findings suggest that patients with cancer are doing remarkably well with regard to adjustment. Connectedness with parents and peers mediates the relationship between optimism and psychological adjustment. As such, children with cancer who are identified as experiencing poor adjustment may benefit from interventions to foster connectedness.

Background Using patient-reported outcomes (PROs) in clinical practice has been shown to enhance detection of health-related quality of life problems and satisfaction with care in children with cancer. This study seeks to identify which PRO information healthcare professionals (HCPs) find useful and what the perceived barriers for routinely assessing PROs are. Procedure A total of 352 pediatric HCPs (43% male) from 52 countries completed a semistructured online 28-item questionnaire. Descriptive statistics (percentages) were used to identify highly important PRO information and perceived barriers. HCPs' perceived barriers were compared according to gender, years of work experience, and country using a Fishers exact test. Results The five highest ranked PRO topics relevant in routine assessment by HCPs were as follows: pain (98%), feeling sad or depressed (96%), overall physical symptoms (95%), problems with therapy adherence (94%), and overall emotional issues (93%). Five lowest ranked topics were as follows: difficulties praying (50%), other spiritual concerns (55, 56, and 60%), and feeling bored (60%). Barriers for assessing PROs included: time (58%), insufficient staff (49%), logistics (32%), and financial resources (26%). Providers from developing countries more often reported barriers concerning insufficient staff, logistics, and financial resources. Conclusions HCPs strongly value the use of physical and psychosocial PROs within pediatric oncology practice, but mainly perceive organizational barriers for routine assessment. To successfully integrate PROs, efforts should be made to address HCP-perceived barriers, such that patient-reported problems can be detected and timely referrals made.

Contains fulltext : 171466.pdf (Publisher’s version ) (Closed access) OBJECTIVE: The Psychosocial Assessment Tool (PAT) was developed to screen for psychosocial risk in families of a child diagnosed with cancer. The current study is the first describing the cross-cultural adaptation, reliability, validity, and usability of the PAT in an European country (Dutch translation). METHODS: A total of 117 families (response rate 59%) of newly diagnosed children with cancer completed the PAT2.0 and validation measures. RESULTS: Acceptable reliability was obtained for the PAT total score (alpha = .72) and majority of subscales (0.50-0.82). Two subscales showed inadequate internal consistency (Social Support alpha = .19; Family Beliefs alpha = .20). Validity and usability were adequate. Of the families, 66% scored low (Universal), 29% medium (Targeted), and 5% high (Clinical) risk. CONCLUSIONS: This study confirms the cross-cultural applicability, reliability, and validity of the PAT total score. Reliability left room for improvement on subscale level. Future research should indicate whether the PAT can be used to provide cost-effective care.

Contains fulltext : 172735.pdf (Publisher’s version ) (Open Access) PURPOSE: Illness cognitions are an important mediator between disease and psychological adjustment. This study assessed the psychometric properties of the Illness Cognition Questionnaire (ICQ), adjusted for the parents of an ill child. METHODS: Participants were recruited from two multicenter studies: sample 1 included 128 parents of a child diagnosed with acute lymphoblastic leukemia (ALL) (response rate 82 %) and sample 2 included 114 parents of a child diagnosed with cancer (response rate 74 %). Parents completed an adapted version of the ICQ (Illness Cognition Questionnaire-Parent version (ICQ-P)), together with the Profile of Mood States (POMS; sample 1) or the Hospital Anxiety and Depression Scale (HADS; sample 2). The factor structure of the ICQ-P was examined by means of principal component analysis. Cronbach's alpha for each subscale and correlations between the ICQ-P scales and the HADS and POMS were calculated. The illness cognitions of parents with and without psychological distress were compared. RESULTS: Factor analysis confirmed the hypothesized structure of the ICQ-P in our sample (n = 242). The three scales Helplessness, Acceptance, and Perceived Benefits explained 9.8, 31.4, and 17.9 % of the variance, respectively. Cronbach's alpha showed adequate internal consistency (.80-.88). Concurrent and criterion-related validity were appropriate. CONCLUSIONS: The results confirm that the ICQ-P reliably assesses the illness cognitions of the parents of a child with cancer. Psychologically distressed parents showed less acceptance and more helplessness. The availability of a short and valid illness cognition questionnaire will help clinicians gain insight into parental cognitions regarding the illness of their child, information that might be helpful for targeting interventions.

This study was aimed at assessing fathers' and mothers' distress 6 months after a pediatric cancer diagnosis and at determining whether this is related to the level of family psychosocial risk 1 month after the diagnosis.A sample of 192 families completed the electronic Psychosocial Assessment Tool (ePAT) 1 month after the diagnosis. At 6 months after the diagnosis, 119 mothers and 98 fathers completed the Distress Thermometer for Parents (DT-P; of which n=132 had also completed the ePAT at baseline). The DT-P consists of a thermometer score ranging from 0 to 10 (with a score ≥ 4 indicating clinical distress), problem domains (total, practical, social, emotional, physical, cognitive, and parenting for children2 years old and for children ≥ 2 years old), and a desire for a referral. The DT-P scores of mothers and fathers were compared with the scores of a reference group of 671 mothers and 463 fathers with healthy children. Within the pediatric cancer group, the DT-P scores of families with elevated total ePAT-scores were compared with the DT-P scores of parents with universal ePAT scores.Parents of children with cancer more often reported clinical distress on the DT-P than parents of healthy children (fathers, 59.2% vs 32.3%; P.001; mothers, 63% vs 42.3%; P.001) and reported more problems on all DT-P domains (P.001 to P = .042) except for the parenting domain for children2 years old. Furthermore, the ePAT predicted parental distress 6 months after the diagnosis because parents with elevated ePAT scores reported more problems than parents with universal scores on the DT-P thermometer and most of the DT-P domains (P.001 to P = 1.00).Initial ePAT risk scores at diagnosis are predictive of future mean levels of parental distress. Cancer 2018;124:381-90. © 2017 American Cancer Society.

Several studies in adults have shown patient reported outcomes (PROs) to be effective in enhancing patient-physician communication and discussion of Health Related Quality of Life outcomes. Although less studied, positive results have been demonstrated in children. A PRO-intervention needs to be feasible in clinical practice to be successful. In the current study, 74 parents of children who successfully completed their cancer treatment and 21 pediatric oncologists (POs) evaluated a PRO-intervention and gave recommendations for future use in their practice. Most parents and POs suggested PROs to be an important part of standard care, starting during treatment, with an assessment frequency of every 3 months.

The use of patient reported outcomes (PROs) in pediatric practice is effective in increasing discussion about emotional and psychosocial functioning. This finding forms the basis for implementing KLIK: a web-based program using electronic PROs (ePROs). The aim of this article is to describe the KLIK implementation in line with the 8 methodological recommendations composed by the International Society for Quality of Life Research (ISOQOL). (1) Goal of KLIK: to monitor and screen children (aged 0–18) with chronic illnesses over extended periods of time. (2) Children aged 8–18 complete the questionnaires themselves. Parents complete the questionnaires for young children. (3) The basis is a generic HRQOL questionnaire. Disease-specific HRQOL and psychosocial questionnaires are also available. (4) A web-based mode was selected. (5) The questionnaires in KLIK are available prior to a consultation. Pediatricians retrieve the ePROfile from the website (www.hetklikt.nu) and discuss it with the patients. The ePROfile consists of a literal representation of the answers and a graphic presentation. (6) Various tools are used to aid in its interpretation. (7) All members of the multidisciplinary team receive training in how to use the website and how to adequately respond to the patient’s ePROfile. (8) Improvements to and evaluation of KLIK are ongoing. Since implementation began, 17 patient groups, 160 professionals and >1,450 patients have started using KLIK. The implementation of KLIK appears to be feasible and workable. Many pediatricians have shown an interest in using KLIK and it is therefore being expanded and adapted for different patient groups and hospitals. (PsycINFO Database Record (c) 2014 APA, all rights reserved)

Background: Parents of children with cancer are at risk for impaired health-related quality of life (HRQoL). Most prior research has focused on the HRQoL of mothers. The aim of this study is to describe HRQoL in mothers and fathers, and determine the influence of sociodemographic, medical, and psychosocial factors. Procedure: In a cross-sectional study, both parents completed questionnaires on sociodemographics, distress, and HRQoL. Parental HRQoL was compared to healthy population values. Differences between mothers and fathers were evaluated with multilevel analysis. Gender-specific HRQoL determinants were assessed via multiple linear regression analysis. Results: Parents (202 mothers, 150 fathers; comprising 121 couples) of 231 children with different cancer diagnoses (mean time since diagnosis 3.3 ± 1.4 years, 90% posttreatment) participated. Compared to healthy women and men, mothers and fathers reported significantly impaired HRQoL on the following domains: cognitive functioning, sleep, daily activities, and vitality (Cohen's d = 0.3-0.9). Additionally, maternal HRQoL was reduced on the domains gross motor functioning, pain, social functioning, sexuality, and depressive emotions. Mothers scored worse than fathers on six of 12 domains. Risk factors for adverse outcomes in both parents were higher distress, emotional and parenting problems, little social support, medication use, and active treatment of the child. Other determinants in mothers were non-Dutch background and unemployment, while lower HRQoL in fathers was predicted by their child's diagnosis type, shorter time since diagnosis, and treatment intensity. Conclusion: These outcomes illustrate the need for family-centered care. Future interventions aimed at improving parental functioning should take into account gender-specific differences in HRQoL to reach optimal efficacy.

Contains fulltext : 174753.pdf (Publisher’s version ) (Open Access) BACKGROUND: The purpose of this study is to provide Dutch normative data and to assess internal consistency and known-groups validity for the TNO AZL Preschool Children Quality of Life (TAPQOL) and the acute version of the generic Pediatric Quality of Life Inventory (PedsQL 4.0) in Dutch young children aged 0-7 years. METHODS: Participants were selected from a panel of a large Dutch market research agency. A sample of 794 parents (response rate 61%, 39% fathers) of children (53% boys) from the general Dutch population, completed an electronic version of the TAPQOL (N = 227 infants aged 0-1 years) or PedsQL 4.0 (N = 293 toddlers aged 2-4 years and N = 274 young children aged 5-7 years). RESULTS: Except for the 'stomach' scale (alpha = .39), the TAPQOL showed acceptable to excellent internal consistency (alpha = .60-.88). The PedsQL 4.0 showed acceptable to excellent reliability in children aged 2-4 years (alpha = .60-.88) and in children aged 5-7 years (alpha = .76-.90). Children with a chronic health condition had lower scores than healthy children on 3 out of 12 domains of the TAPQOL (p = .001-.013) and on 2 out of 6 domains of the PedsQL 4.0 for children aged 2-4 years (p = .016-.04). The PedsQL 4.0 differentiated on all domains (p < .05) between children aged 5-7 years with and without a chronic health condition. CONCLUSION: In Dutch children aged 0-7 years old, HRQoL can be relialy measured with the TAPQOL and the PedsQL 4.0. However, it remains unclear whether these HRQoL instruments can distinguish between healthy children and children with a chronic health condition under the age of 5.

The KLIK method is an online tool that monitors and discusses electronic patient-reported outcomes (ePROs), which has been shown to enhance outcomes. This study aimed (1) to determine the fidelity (ie, extent to which used as intended) of the KLIK method as implemented in outpatient pediatric cancer care and (2) to study health care professional (HCP)-reported barriers and facilitators for implementation.Two hundred five children with newly diagnosed cancer (enrollment rate 85%) participated. At 1 (T1), 3 (T2), and 6 (T3) months after diagnosis, patients (8-18 years) or parents (of patients 0-7 years) completed health-related quality of life (HRQoL) questionnaires, which were transformed into an ePROfile and discussed by their HCP during consultations. Fidelity was determined by the following: percentage of website registrations, HRQoL questionnaires completed, and ePROfiles discussed. Implementation determinants were assessed with HCPs after the final T3 with the Measurement Instrument for Determinants of Innovations.Depending on the time point (T1-T3), fidelity was 86% to 89% for website registration, 66-85% for completed HRQoL questionnaires, and 56% to 62% for ePROfile discussion. Barriers were mainly related to organizational issues (eg, organizational change) and less frequently to users (eg, motivation to comply) or the intervention (compatibility). Facilitators were related to the user (eg, positive outcome expectations) and intervention (simplicity) but not to the organization.When implementing ePROs in outpatient pediatric oncology practice, HCPs report determinants that influence ePRO integration. To improve implementation and outcomes, tailored organizational (eg, formal ratification by management and time) and specific local (eg, individualized assessments) strategies should be developed to achieve optimal ePRO discussion.

Very preterm born children with a gestational age less than 32 weeks and/or birth weight less than 1500 grams, are at risk for developing neurological deficits that may influence cognitive, motor and behavioral developmental trajectories. Simply asking these children at early school age to draw a person, might give a first impression of their cognitive and motor development.

Contains fulltext : 182347.pdf (Publisher’s version ) (Closed access) OBJECTIVE: The Psychosocial Assessment Tool (PAT) was developed to screen for psychosocial risk, aimed to be supportive in directing psychosocial care to families of a child with cancer. This study aimed to determine (i) the match between PAT risk score and provided psychosocial care with healthcare professionals blind to outcome of PAT assessment, and (ii) the match between PAT risk score and team risk estimation. METHODS: Eighty-three families of children with cancer from four pediatric oncology centers in the Netherlands participated (59% response rate). The PAT and team risk estimation was assessed at diagnosis (M = 40.2 days, SD = 14.1 days), and the content of provided psychosocial care in the 5-month period thereafter resulting in basic or specialized care. RESULTS: According to the PAT, 65% of families were defined as having low (universal), 30% medium (targeted), and 5% high (clinical) risk for developing psychosocial problems. Thirty percent of patients from universal group got basic psychosocial care, 63% got specialized care, and 7% did not get any care. Fourteen percent of the families at risk got basic care, 86% got specialized care. Team risk estimations and PAT risk scores matched with 58% of the families. CONCLUSIONS: This study showed that families at risk, based on standardized risk assessment with the PAT, received more specialized care than families without risk. However, still 14% of the families with high risks only received basic care, and 63% of the families with standard risk got specialized care. Standardized risk assessment can be used as part of comprehensive care delivery, complementing the team.

Introduction The aim of this study was to examine differences in drawing skills between very preterm and term children, and to determine whether very preterm children’s cognitive and motor development is reflected in the draw-a-person test (DAP) at age 5. Seventy-two very preterm children (birth weight

S.A. Schepers (1), V.E. Engelen (2), L. Haverman (1), H.N. Caron (3), P.M. Hoogerbrugge (4), G.J.L. Kaspers (5), R.M. Egeler (6), and M.A. Grootenhuis (1) (1) Emma Children’s Hospital, Academic Medical Center (AMC), Psychosocial Department, Amsterdam (2) Dutch Society for Psychosocial Oncology (NVPO), Amsterdam (3) Emma Children’s Hospital, AMC, Pediatric Oncology Department, Amsterdam (4) Radboud University Medical Centre, Pediatric Oncology Department, Nijmegen (5) VU University Medical Center, Pediatric Oncology Department, Amsterdam (6) Leiden University Medical Center, Pediatric Oncology Department, Leiden