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.

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.

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.

Predicting trajectories of behavioral adjustment in children diagnosed with acute lymphoblastic leukemia.

PURPOSE: Previous research showed that children with cancer are at risk for developing behavioral adjustment problems after successful treatment; however, the course of adjustment remains unclear. This study focuses on adjustment trajectories of children during treatment for acute lymphoblastic leukemia (ALL) and aims to distinguish subgroups of patients showing different trajectories during active treatment, and to identify sociodemographic, medical, and psychosocial predictors of the distinct adjustment trajectories. METHODS: In a multicenter longitudinal study, 108 parents of a child (response rate 80 %) diagnosed with ALL were assessed during induction treatment (T0), after induction/consolidation treatment (T1), and after end of treatment (T2). Trajectories of child behavioral adjustment (Child Behavior Checklist; CBCL) were tested with latent class growth modeling (LCGM) analyses. RESULTS: For internalizing behavior, a three-trajectory model was found: a group that experienced no problems (60 %), a group that experienced only initial problems (30 %), and a group that experienced chronic problems (10 %). For externalizing behavior, a three-trajectory model was also found: a group that experienced no problems (83 %), a group that experienced chronic problems (12 %), and a group that experienced increasing problems (5 %). Only parenting stress and baseline QoL (cancer related) were found to contribute uniquely to adjustment trajectories. CONCLUSIONS: The majority of the children (77 %) showed no or transient behavioral problems during the entire treatment as reported by parents. A substantial group (23 %) shows maladaptive trajectories of internalizing behavioral problems and/or externalizing behavioral problems. Screening for risk factors for developing problems might be helpful in early identification of these children.

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.

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.