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.

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.

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.

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.

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.

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.

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.

Real-world implementation of electronic patient-reported outcomes in outpatient pediatric cancer care.

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.

First experience with electronic feedback of the Psychosocial Assessment Tool in pediatric cancer care.

PURPOSE: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

Dutch normative data and psychometric properties for the Distress Thermometer for Parents.

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 < .001). Also, on all domains they reported more problems (p = .000-.022). Normative scores for mothers and fathers separately were provided. CONCLUSION: The DT-P distinguishes well between parents of a child with and without a chronic condition. With the current norms available, distress can be evaluated in parents of a child with a chronic condition compared to parents of healthy children in pediatric clinical practice.

Healthcare Professionals' Preferences and Perceived Barriers for Routine Assessment of Patient-Reported Outcomes in Pediatric Oncology Practice: Moving Toward International Processes of Change.

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.

Illness cognitions and family adjustment: psychometric properties of the Illness Cognition Questionnaire for parents of a child with cancer.

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.

Screening for Psychosocial Risk in Dutch Families of a Child With Cancer: Reliability, Validity, and Usability of the Psychosocial Assessment Tool.

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 (α = .72) and majority of subscales (0.50-0.82). Two subscales showed inadequate internal consistency (Social Support α = .19; Family Beliefs α = .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.

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.