Kelly Hancock

Longitudinal health-related quality of life outcomes and related factors after pediatric SCT

Our purpose was to investigate longitudinally health-related quality of life (HRQOL) outcomes and related factors up to 2 years post-pediatric SCT. A total of 99 mothers of patients, aged 1.5–17 years, completed two standardized HRQOL questionnaires, generic and disease specific (DS), about the child, and reported on their own symptoms of depression and family function pre-SCT, 12 and 24 months post-SCT. Clinical (diagnosis, radiation), child (age) and family (maternal depression) information was also obtained. Significant improvement in physical and psychosocial HRQOL from pre-SCT to 1 or 2 years post-SCT was reported. Survivors of ALL were reported to have poorer physical and psychosocial HRQOL than survivors of solid tumors on the DS measure. Maternal depression was negatively associated with physical and psychosocial HRQOL. Maternal education (higher) at pre-SCT predicted improvements in physical domains 2 years post-SCT; mothers age (older) and childs age (younger) also predicted improvements of physical and emotional HRQOL. We conclude that survivors of pediatric SCT improved physical and psychosocial HRQOL by 1 and 2 years post-SCT. Older survivors whose mothers are younger and distressed, with lower education at SCT have compromised HRQOL compared to other survivors. This study has important implications for the care of SCT survivors and their families.

External validity and reliability of the psychosocial assessment tool (PAT) among Canadian parents of children newly diagnosed with cancer

The Psychosocial Screening Tool (PAT) was developed and validated with a sample of caregivers of children newly diagnosed with cancer in the United States. This study aimed to assess cultural adaptation (Phase 1) and validity and reliability of the revised PAT (PATrev) with a Canadian sample (Phase 2).

Does the use of the revised Psychosocial Assessment Tool (PATrev) result in improved quality of life and reduced psychosocial risk in Canadian families with a child newly diagnosed with cancer

Early psychosocial screening may guide interventions and ameliorate the adverse psychosocial effects of childhood cancer. The revised psychosocial assessment tool provides risk information – Universal (typical distress), Targeted (additional specific distress), and Clinical (severe distress) – about the child with cancer and his or her family. This pilot study investigated the benefits of providing a summary of family psychosocial risk information to the medical team treating the newly diagnosed child (Experimental Group, EG).

Differences in mothers' and fathers' psychological distress after pediatric SCT: a longitudinal study.

The purpose of this study was to examine longitudinally psychological distress and its correlates in mothers and fathers of children who undergo SCT, up to 2 years post SCT. A total of 111 parents of patients diagnosed mainly with leukemia completed standardized measures of depression and anxiety symptoms as indicators of psychological distress, 85 at 1 year pre-SCT and 81 at 2 years post SCT. Parents’ age and gender, childs age, diagnosis, radiation history, behavior and physical health were examined as potential related factors. Linear mixed models for repeated measures with appropriate covariance structure were used in the analysis. Depression and anxiety scores significantly decreased by 2 years for mothers and fathers. Mothers reported significantly more depression symptoms than did fathers, but reported comparable symptoms of anxiety. Pre-SCT depression and anxiety scores, mothers age (younger), childs behavior problems, radiation history and diagnosis of neuroblastoma predicted maternal distress 2 years post SCT; pre-SCT depression and anxiety scores, fathers age (older) and childs diagnosis predicted fathers distress. This study highlights differences and similarities in mothers’ and fathers’ psychological distress and identifies related risk factors. The results can guide interventions for mothers and fathers whose children undergo SCT based on their pre-SCT psychosocial risk.

Differences in mothers’ and fathers’ health-related quality of life after pediatric SCT: a longitudinal study

The purpose of this study was to examine longitudinally health-related quality of life (HRQOL) and related factors in mothers and fathers of children who undergo SCT, before, and 1 and 2 years after SCT. A total of 84 parents (49 mothers/35 fathers) of patients diagnosed mainly with leukemia completed a HRQOL measure before SCT, 46 at 1 year (26 mothers/20 fathers) and 50 parents (31 mothers/19 fathers) at 2 years post SCT. Physical and psychosocial HRQOL summary scores are reported. Parents’ age and gender, childs diagnosis, radiation history, age, behavior and physical health were examined. Linear mixed models for repeated measures with a covariate structure were used for analysis. Physical HRQOL did not differ between mothers and fathers or over time. Maternal and paternal psychosocial HRQOL scores improved by 2 years post SCT. Childs behavior problems and poor health, and maternal age (younger) predicted poor maternal psychosocial HRQOL 2 years post SCT. Childs behavior problems, diagnosis and treatment severity predicted poor paternal psychosocial HRQOL. These findings identify similar (childs poor behavior) and differential risk factors (parental young age, disease and treatment severity, and childs poor health status) for poor HRQOL for mothers and fathers. These findings can guide comprehensive family-care interventions before, during and after pediatric SCT.

Factors affecting recruitment and participation of bereaved parents and siblings in grief research

Abstract This study examined participation factors in a study of families (N = 84) within 1 year of a childs cancer-related death. Specific aims were to examine associations between: (a) recruitment variables (number of phone calls made to eligible families, number of calls answered by eligible families) and participation rates (study agreement and refusal) and (b) characteristics of deceased children (gender, age, length of illness, time since death) and participation rates. Characteristics of deceased children did not differ between participating and non-participating families. Researchers made significantly fewer calls to participating versus refusing families. Participating families most often agreed during the first successful call connection, and more calls did not mean more recruitment success. Thus, it is reasonable to limit the number of calls made to bereaved families. Despite recruitment challenges, many bereaved parents and siblings are willing and interested to participate in grief research.

A Randomized Control Intervention Trial to Improve Social Skills and Quality of Life in Pediatric Brain Tumor Survivors.

To determine if a group social skills intervention program improves social competence and quality of life (QOL) in pediatric brain tumor survivors (PBTS).

Healthcare Providers’ Perceptions of the Utility of Psychosocial Screening Tools in Childhood Cancer: A Pilot Study

PURPOSE/OBJECTIVES To examine the perceptions of healthcare providers (HCPs) regarding the utility of two psychosocial screening tools designed for pediatric oncology, the Psychosocial Assessment Tool-Revised (PATrev) and the Psychosocial Care Checklist (PCCL). DESIGN Repeated measures comparative study. SETTING Four pediatric health centers in Ontario, Canada. SAMPLE 15 oncologists, 14 nurses, and 8 social workers. METHODS Using a visual analog scale (VAS), participants were asked to rate how useful they found (a) the psychosocial summary derived from the parent-completed PATrev, used to assess family psychosocial risk, and (b) the HCP-completed PCCL, used to identify family psychosocial needs. Measures were completed soon after diagnosis and six months later. Mann-Whitney U tests were used for analyses. MAIN RESEARCH VARIABLE VAS scores. FINDINGS Pediatric oncology HCPs differ in their acceptance of the psychosocial screening tools tested. The highest utility ratings for both instruments were from nurses, and the lowest utility ratings were from social workers; moderate ratings were obtained from oncologists. CONCLUSIONS Psychosocial screening tools can identify the psychosocial needs of children with cancer and their families throughout the cancer trajectory. Consequently, these tools could foster communication among colleagues (medical and nonmedical) who are caring for children with cancer about the psychosocial needs of this population and the allocation of resources to address those needs. IMPLICATIONS FOR NURSING Nurses seem to value these tools more than other HCPs, which may have positive implications for their clinical practice.

Determinants of quality of life outcomes for survivors of pediatric brain tumors: Barrera et al.

To describe the quality of life (QOL) of pediatric brain tumor survivors (PBTSs) prospectively and to identify potential medical, personal and family contextual factors associated with QOL.

Healthcare Professionals' Knowledge of Family Psychosocial Problems in Pediatric Cancer: A Pilot Study.

Background: Best practice guidelines for the treatment of cancer now advocate for a child- and family-centered model of care and a psychosocial model of risk prevention. However, healthcare professionals (HCPs) report a number of barriers preventing the implementation of psychosocial care, including an absence of tools to help identify psychosocial problems within the family. Objectives: The aims of this study are to (1) explore the psychometric properties of the Psychosocial Care Checklist (PCCL) and (2) test if the PCCL can differentiate the degree to which HCPs are aware of psychosocial problems within the family (patient, siblings, parents) of a child with cancer. Methods: Thirty-seven HCPs caring for a child with cancer completed the PCCL at time 1 (2-4 weeks after diagnosis) and 29 HCPs completed the PCCL at time 2 (2-3 weeks after). Results: The PCCL had strong test-retest reliability for all domains (&agr; > .60) and strong internal consistency for the total PCCL (&agr; = .91). Interrater reliability was moderate for the oncologist-nurse dyad with regard to sibling knowledge (r = 0.56) and total psychosocial knowledge (r = 0.65). Social workers were significantly more knowledgeable than both nurses and oncologists about total family problems (P = .01) and sibling problems (P = .03). Conclusions: Preliminary findings suggest that the PCCL has adequate test-retest reliability and validity and is useful in differentiating the degree to which HCPs are aware of psychosocial problems within the family, with social workers being the most knowledgeable. Implications for Practice: Using the PCCL may help HCPs to identify psychosocial problems within the family and appropriately allocate psychosocial resources.