Argerie Tsimicalis

The magnitude and predictors of abandonment of therapy in paediatric acute leukaemia in middle-income countries: A systematic review and meta-analysis

BACKGROUND Abandonment of therapy is a significant cause of paediatric cancer treatment failure in low- to middle-income countries (LMIC), but its impact has been underestimated. We performed a meta-analysis to determine the magnitude of abandonment in paediatric leukaemia in LMIC and sought to identify patient-, centre- and country-specific predictors of abandonment. PATIENTS AND METHODS We searched seven databases to identify paediatric oncology cohorts followed up from diagnosis and treated in LMIC. All languages were included. Two reviewers independently selected articles and extracted data. Authors were contacted for additional information. Subgroup analyses were planned a priori. RESULTS Of 22,384 publications, 318 in eight languages met criteria for full text review. 157 studies met analysis inclusion criteria. Abandonment rates (ARs), obtained for 83 of the 157 studies (52.9%), ranged from 0% to 74.5%. ARs were frequently unreported and available only directly from authors. Forty studies (10,494 children in 20 countries) were quantitatively analysed. ARs for acute lymphoblastic laeukemia in lower-middle-income countries (lower-MICs) were higher than in upper-middle-income countries (29%, 95% confidence interval (CI) 23-36% versus 2%, 95% CI 1-3%; p<0.0001) but were heterogeneous (I(2)=98%; p<0.0001). This heterogeneity was not explained by centre-specific (free versus paid treatment) or country-specific (government health expenditure, per-capital income) subgroups. CONCLUSIONS In LMICs, ARs are highest in lower-MICs. However, their broad range suggests that low ARs are possible in resource-constrained settings. Analysis of outliers may suggest interventions for use at other centres. Methodologically appropriate reporting of ARs should be adopted. Future research should evaluate interventions targeting abandonment.

A mixed method approach to describe the out-of-pocket expenses incurred by families of children with cancer.

Families of children with cancer are confronted with a broad range of direct costs (out‐of‐pocket expenses), but the nature of these costs is poorly understood. This study aimed to disaggregate and describe these costs.

A prospective study to determine the costs incurred by families of children newly diagnosed with cancer in Ontario

A diagnosis of cancer in childhood places a considerable economic burden on families, although costs are not well described. The objectives of this study were to identify and determine independent predictors of the direct and time costs incurred by such families.

Determining the costs of families' support networks following a child's cancer diagnosis.

Background: Cancer in children may place considerable economic burden on more than individual family members. The costs incurred to families’ support networks (FSNs) have not been previously studied. Objectives: The study objectives were to (a) identify and determine independent predictors of the direct and time costs incurred by the FSN and (b) explore the impact of these cancer-related costs on the FSN. Methods: A prospective mixed-methods study was conducted. Representing the FSN, parents recorded the resources consumed and costs incurred during 1 week per month for 3 consecutive months, beginning 1 month following their child’s diagnosis. Descriptive statistics, multiple regression modeling, and descriptive qualitative analytical methods were used to analyze the data. Results: In total, 28 fathers and 71 mothers participated. The median total direct and time costs for the 3 months were CAN

Balancing Illness and Parental Demands: Coping With Cancer While Raising Minor Children.

154 and

Tele‐practice guidelines for the symptom management of children undergoing cancer treatment

2776, respectively, per FSN. The largest component of direct and time costs was travel and foregone leisure. Direct and time costs were greatest among those parents who identified a support network at baseline. Parents relied on their FSN to “hold the fort,” which entailed providing financial support, assuming household chores, maintaining the siblings’ routines, and providing cancer-related care. Conclusions: Families’ support networks are confronted with a wide range of direct and time costs, the largest being travel and foregone leisure. Implications for Practice: Families’ support networks play an important role in mitigating the effects of families’ costs. Careful screening of families without an FSN is needed.

Usability testing of a computerized communication tool in a diverse urban pediatric population.

PURPOSE/OBJECTIVES To explore the cancer experience of parents and their perceptions of supportive strategies to assist them with illness- and family-related challenges. DESIGN Qualitative, descriptive design. SETTING A large McGill University-affiliated hospital cancer care center in Montreal, Quebec, Canada. PARTICIPANTS Five mothers and seven fathers aged 33-67 years with a first cancer diagnosis who received treatment at the cancer clinic within the previous year. Participants had to have at least one minor child living with them. METHODOLOGIC APPROACH Semistructured, audio-recorded interviews. FINDINGS Three main categories emerged. CONCLUSIONS Coping with cancer while raising children requires delicate balancing of illness and parenting demands. Tangible support systems must include access to childcare services, home healthcare services, and transportation solutions. INTERPRETATION Support for parenting needs is a key component of comprehensive cancer care. Oncology nurses should stay informed of all hospital, clinic, and community resources to facilitate access for parents. Unmet support needs indicate that improvements need to be made in access to medical appointments around family schedules, expanded resources for children, and reduction of wait times.

Measuring Resource Utilization in Patient-Oriented Comparative Effectiveness Research: A Psychometric Study of the Resource Utilization Questionnaire

The provision of tele‐practice symptom management is often without the provision of evidence‐based guidelines. Under the auspices of the Pediatric Oncology Group of Ontario, a nursing task force was established to appraise the evidence and develop guidelines. Promising new efforts to enhance symptom management through tele‐practice are emerging. Seven guidelines and one documentation tool were created from evidence compiled from case reports, clinical examples, and nonexperimental studies. The symptom management guidelines contribute to the paucity of literature and may serve as a useful resource for health professionals providing telephone advice and conducting tele‐practice symptom management assessments. Pediatr Blood Cancer 2011; 57: 541–548.

Linguistic Validation of an Interactive Communication Tool to Help French-Speaking Children Express Their Cancer Symptoms:

Background: Developed in Norway, Sisom is an interactive, rigorously tested, computerized, communication tool designed to help children with cancer express their perceived symptoms/problems. Children travel virtually from island to island rating their symptoms/problems. While Sisom has been found to significantly improve communication in patient consultations in Norway, usability testing is warranted with US children prior to further use in research studies. Objective: The objective of this study was to determine the usability of Sisom in a sample of English- and Spanish-speaking children in an urban US community. Methods: A mixed-methods usability study was conducted with a purposive sample of healthy children and children with cancer. Semistructured interviews were used to assess healthy children’s symptom recognition. Children with cancer completed 8 usability tasks captured with Morae 3.3 software. Data were downloaded, transcribed, and analyzed descriptively. Results: Four healthy children and 8 children with cancer participated. Of the 44 symptoms assessed, healthy children recognized 15 (34%) pictorial symptoms immediately or indicated 13 (30%) pictures were good representations of the symptom. Six children with cancer completed all tasks. All children navigated successfully from one island to the next, ranking their symptom/problem severity, clicking the magnifying glass for help, or asking the researcher for assistance. All children were satisfied with the aesthetics and expressed an interest in using Sisom to communicate their symptoms/problems. Conclusions: A few minor suggestions for improvement and adjustment may optimize the use of Sisom for US children. Implications for Practice: Sisom may help clinicians overcome challenges assessing children’s complex symptoms/problems in a child-friendly manner.

Validation of the scale on Satisfaction of Adolescents with Postoperative pain management - idiopathic Scoliosis (SAP-S).

In the United States, rising health care costs have led to discussion about bending the cost curve. To understand the true burden of disease and its treatment, costs of care, including those incurred by patients and their families, must be comprehensively assessed using psychometrically sound instruments. The Resource Utilization Questionnaire (RUQ) is a 21-item self-report questionnaire first developed to measure the costs incurred by families of infants who had required intensive care during the newborn period. The purpose of this article is to describe the conceptualization of resource utilization and costs and other methodological issues in conducting economic analyses, the process of adapting the RUQ for use in children and families with Type 1 diabetes mellitus (T1DM), and the psychometric evaluation to establish content and criterion validity of the instrument. The finalized modified RUQ for T1DM (mRUQ-T1DM) contained 25 items reflecting direct (5 items) and nondirect (3 items) health care, patient/family time (8 items), and patient/family productivity (9 items) costs using a 3-month recall. The mRUQ-T1DM validly measures cost incurred by children and families with T1DM and is easily completed by parents. Furthermore, the mRUQ-T1DM may be adapted for use in other populations using a similar process.