Sasja A. Schepers

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.

Patient reported outcomes in pediatric oncology practice: suggestions for future usage by parents and pediatric oncologists.

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. Pediatr Blood Cancer 2014;61:1707–1710.

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

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.

Health related quality of life in Dutch infants, toddlers, and young children

BackgroundThe 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.MethodsParticipants 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).ResultsExcept for the ‘stomach’ scale (α = .39), the TAPQOL showed acceptable to excellent internal consistency (α = .60-.88). The PedsQL 4.0 showed acceptable to excellent reliability in children aged 2–4 years (α = .60–.88) and in children aged 5–7 years (α = .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.ConclusionIn Dutch children aged 0–7 years old, HRQoL can be reliably 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.

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 childs 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.

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

BackgroundOver 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.MethodsThe 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.ResultsReported 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.ConclusionPositive 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.

Match of psychosocial risk and psychosocial care in families of a child with cancer

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.