Pain monitoring app leads to less pain in children with cancer at home: Results of a randomized controlled trial.

BACKGROUND: The authors developed a pain monitoring app offering educational information, and real-time health care professional feedback on clinically significant pain (>4 numeric rating scale [NRS]-11) for children with cancer to reduce pain at home. METHODS: This monocenter, nonblinded randomized controlled trial enrolled Dutch children (0-18 years old) receiving cancer treatment (≥3 months after diagnosis, ≥2 months treatment remaining). Children were randomly assigned to use the app or receive usual care (two parallel groups). We assessed whether use of the app yielded less clinically significant pain (aim 1) and whether it affected pain severity, duration, interference, pain management strategies, and parental emotional well-being (aim 2). The app was also evaluated by families (aim 3). RESULTS: A total of 94 children were randomized to use the app (15 drop-outs), and 90 were to receive care as usual (11 drop-outs). The app group (n = 79, mean age: 7.5 [5.1] years, 48% girls, 63% hemato-oncology diagnosis) reported significantly less clinically significant pain compared to usual care (n = 79, mean age: 7.5 [5.4] years, 52% girls, 65% hemato-oncology diagnosis) (odds ratio [OR], 0.38; 95% confidence interval [CI], 0.198-0.734]) (aim 1), as well as significantly lower pain severity (ß = -0.27; 95% CI, -0.407 to -0.142). No differences were found for duration, interference, or management strategies. Parents in the app group reported significantly less distress compared to usual care (ß = -0.84; 95% CI, -1.61 to -0.03]) (aim 2). Families generally evaluated the app positively (aim 3). CONCLUSIONS: Use of the app resulted in less clinically significant pain at home. The exact working mechanisms of the app should be further elucidated.

Psychometric properties of the 52-, 25-, and 10-item English and Spanish versions of the Social Problem-Solving Inventory-Revised.

Objective: The Social Problem-Solving Inventory-Revised (SPSI-R) is a widely used instrument to assess problem-solving ability. This study examined the factor structure of the 52-, 25-, and 10-item versions of the SPSI-R and assessed factorial invariance across English- and Spanish-speaking participants. In addition, the internal consistency, test-retest reliability and sensitivity to detect change in problem-solving skills over time were assessed across the three different versions of the SPSI-R. Methods: Data from three randomized controlled trials, in which caregivers of children with cancer (N = 1,069) were assigned to either a problem-solving skills intervention (N = 728) or a control condition (N = 341), were combined. The SPSI-R was administered at baseline (T1) and immediately post intervention (T2). Reliability and multigroup analyses were performed with confirmatory factor analysis (CFA). Sensitivity to change analyses were performed using repeated measures ANOVA. Results: Confirmatory factor analysis at T1 showed good fit statistics and internal consistency for the 52- and the 25-item versions, but not for the 10-item version. Factorial invariance was demonstrated across time (T1-T2) and language (Spanish-English) for both the 52- and 25-item versions. Adequate sensitivity to change over time was shown. Conclusion: The 52- and 25-item versions of the SPSI-R appear reliable and valid for assessment of problem-solving skills in English- and Spanish-speaking caregivers of children with newly diagnosed cancer. The 25-item SPSI-R can be used as a short version measuring problem-solving ability; the 10-item version cannot be considered a reliable measure for this population.

Reducing pain in children with cancer at home: a feasibility study of the KLIK pain monitor app.

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.

A retrospective assessment of the KLIK PROM portal implementation using the Consolidated Framework for Implementation Research (CFIR).

PURPOSE: The KLIK Patient-Reported Outcome Measure (PROM) portal is an evidence-based intervention implemented in clinical practice in > 25 Dutch hospitals for patients (children and adults) who regularly visit the outpatient clinic. Implementation science frameworks can be used to understand why implementation succeeded or failed, to structure barriers and enablers, and to develop implementation strategies to overcome barriers. This paper aimed to (A) retrospectively describe determinants of successful KLIK PROM implementation using the Consolidated Framework for Implementation Research (CFIR), and (B) identify current barriers and match implementation strategies. METHODS: (A) The KLIK implementation process was described retrospectively based on literature and experience, using the 39 CFIR constructs organized in five general domains: intervention characteristics, outer setting, inner setting, characteristics of individuals, and implementation process. (B) The CFIR-Expert Recommendations for Implementing Change (ERIC) Implementation Strategy Matching tool identified current barriers in the KLIK implementation and matched implementation strategies that addressed the identified barriers. RESULTS: (A) The most prominent determinants of successful KLIK PROM implementation lie in the following CFIR domains: intervention characteristics (e.g., easy to use), characteristics of individuals (e.g., motivation), and process of implementation (e.g., support). (B) 13 CFIR constructs were identified as current barriers for implementing the KLIK PROM portal. The highest overall advised ERIC strategy for the specific KLIK barriers was to identify and prepare champions. CONCLUSION: Using an implementation science framework, e.g., CFIR, is recommended for groups starting to use PROMs in clinical care as it offers a structured approach and provides insight into possible enablers and barriers.

Pain at home during childhood cancer treatment: Severity, prevalence, analgesic use, and interference with daily life.

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.

In-person vs. web-based administration of a problem-solving skills intervention for parents of children with cancer: Report of a randomized noninferiority trial.

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 face-to-face or a web-based version delivered via mobile device. 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. The study was registered with ClinicalTrials.gov Identifier: NCT01711944. 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 < .001). Parents in the web-based BI group also improved their problem-solving (effect size = 0.32, t = 5.32, p < .001). Although the web-based intervention preserved 60% of the standard treatment effect, the test of noninferiority was non-significant (effect size = -0.21, p = 0.55). Similarly, the web-based intervention preserved > 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. FUNDING: National Institutes of Health (U.S.), R01 CA159013 (P.I. Sahler).

Psychosocial Risk Profiles Among American and Dutch Families Affected by Pediatric Cancer.

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.

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer.

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.

Daily mood profiles and psychosocial adjustment in youth with newly diagnosed cancer and healthy peers.

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).

Concurrence of sleep problems and distress: prevalence and determinants in parents of children with cancer.

Background: Parents of children with cancer are at risk for sleep problems. If these problems persist, an important perpetuating factor might be ongoing parental distress. Objective: The aim of this study is to assess the prevalence of sleep problems and the concurrence with distress in parents of children treated for cancer, and to identify predictors of this symptom clustering. Method: Parents completed the Medical Outcomes Study (MOS) Sleep Scale and Distress Thermometer for Parents (DT-P). Clinically relevant sleep problems were defined as a score >1SD above the norm and clinical distress as a thermometer score above the established cut-off of 4. Four parent categories were constructed: neither sleep problems nor distress; no distress but sleep problems; no sleep problems but distress; both sleep problems and distress. Predictive determinants (sociodemographic, medical, psychosocial) for each category were assessed with multilevel multinomial logistic regression. Results: Parents (202 mothers and 150 fathers) of 231 children with different cancers participated. Mean time since diagnosis was 3.3 ± 1.4 years (90% off-treatment). The prevalence of sleep problems was 37%. Fifty percent of parents reported neither sleep problems nor distress, 9% had only sleep problems, 13% only distress, and 28% reported both. Compared to parents without sleep problems or distress, parents who reported both were more likely to report parenting problems (OR 4.4, [2.2-9.1]), chronic illness (OR 2.8, [1.2-6.5]), insufficient social support (OR 3.7, [1.5-9.1]), pre-existent sleep problems (OR 6.2, [2.0-18.6]) and be female (OR 1.8, [1.1-4.2]). Conclusions: Sleep problems are common in parents of children treated for cancer, and occur mostly in the presence of clinical distress. Future research must show which interventions are most effective in this group: mainly targeted at sleep improvement or with prominent roles for stress management or trauma processing.

Antecedentes: Los padres de niños con cáncer corren el riesgo de tener problemas para dormir. Si estos problemas persisten, podría ser un factor perpetuador importante malestar en los padres.Método: Los padres completaron el Estudio de Resultados Médicos (MOS, sus siglas en inglés), la escala de sueño y el termómetro de distrés para padres (DT-P, sus siglas en inglés). Los problemas de sueño clínicamente relevantes se definieron como una puntuación> 1 SD por encima de la norma y el malestar clínico como una puntuación de termómetro por encima del límite establecido de 4. Se construyeron cuatro categorías de padres: sin problemas de sueño ni malestar; sin malestar y con problemas de sueño; sin problemas de sueño y con malestar, tanto problemas de sueño como de malestar. Los determinantes predictivos (sociodemográficos, médicos, psicosociales) para cada categoría se evaluaron con regresión logística multinomial multinivel.Resultados: Participaron padres (202 madres y 150 padres) de 231 niños con diferentes tipos de cáncer. El tiempo medio desde el diagnóstico fue de 3,3 ± 1,4 años (90% sin tratamiento). La prevalencia de problemas de sueño fue del 37%. El cincuenta por ciento de los padres no reportaron problemas de sueño ni malestar, el 9% solo tuvo problemas de sueño, el 13% solo sufrió malestar y el 28% informó de ambos. En comparación con los padres sin problemas de sueño o malestar, los padres que informaron ambos problemas, tenían más probabilidades de reportar problemas de crianza (OR 4.4, [2.2-9.1]), enfermedades crónicas (OR 2.8, [1.2-6.5]), apoyo social insuficiente (OR 3.7), [1.5-9.1]), problemas de sueño preexistentes (OR 6.2, [2.0-18.6]) y ser mujer (OR 1.8, [1.1-4.2]).Conclusiones: Los problemas del sueño son comunes en los padres de niños tratados por cáncer, y ocurren principalmente en presencia de malestar clínico. Las investigaciones futuras deben mostrar qué intervenciones son más efectivas en este grupo: principalmente dirigidas a mejorar el sueño o con roles prominentes para el manejo del estrés o el procesamiento de traumas.

Health-Related Quality of Life of Adolescents with Cancer During the First Year of Treatment.

Purpose: Adolescents with cancer (aged 12-18 years) are at risk for impaired health-related quality of life (HRQoL). Little is known about this population during treatment. This study aimed to (1) determine the HRQoL of adolescents with cancer during the first year of treatment and compare them with age-matched peers and (2) obtain insight into cancer-specific HRQoL of adolescents during the first year of treatment. Methods: Participants were part of a larger study focused on routine monitoring of electronic reported outcomes in standard pediatric oncology care. Adolescents completed the pediatric quality of life inventory (PedsQL) 4.0 and the PedsQL Cancer Module 3.0. Mean generic HRQoL scale scores were compared between the groups using multivariate analysis of covariance. Cancer-specific item scores were dichotomized and percentages were calculated to determine the proportion of adolescents reporting presence or absence of problems. Results: A total of 73 (mean [M]age = 14.71, standard deviation [SD] = 1.85) adolescents with cancer (Mage = 14.71, SD = 1.85, Mtimesincediagnosis = 3.51 months, SD = 2.8) and 268 healthy peers (Mage = 14.23, SD = 1.51) participated. Adolescents with cancer reported significantly lower generic HRQoL scores on all domains than their peers (p's <0.05, η2 = 0.01-0.42). Most frequently reported cancer-specific HRQoL problems were pain (hurt joint/muscle, 42.9%), nausea (during medical treatments [47.1%]; food not tasting good [54.3%]; food and smells [61.4%]), worry (about relapse [45.7%]; about side effects [52.9%]), cognitive problems (paying attention [47.1%]), and physical appearance (not good looking [47.1%]). Conclusions: Adolescents with cancer showed impaired HRQoL during treatment on both physical and psychosocial domains. Close monitoring of physical and psychosocial symptoms during treatment is, therefore, important.

Gender-specific differences in parental health-related quality of life in childhood cancer.

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.

The Effect of Optimism and Connectedness on Psychological Adjustment of Children with Cancer and Comparison Peers.

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.

Adjustment in Childhood Cancer Survivors, Healthy Peers, and Their Parents: The Mediating Role of the Parent-Child Relationship.

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.

Youth and parent perceptions of parenting in childhood cancer survivors and healthy peers.

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.

Profiles of Adjustment in Pediatric Cancer Survivors and Their Prediction by Earlier Psychosocial Factors.

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.

Barriers and facilitators to the implementation of a paediatric palliative care team.

BACKGROUND: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home. METHODS: The Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which ≥20% of participants responded with 'totally disagree/disagree' and ≥80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions. RESULTS: Reported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT. CONCLUSION: Positive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.

Parental distress 6 months after a pediatric cancer diagnosis in relation to family psychosocial risk at diagnosis.

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 2018;124:381-90. © 2017 American Cancer Society.