Patient-Reported Outcome Benefits for Children with Advanced Cancer and Parents: A Qualitative Study.

CONTEXT: Electronic patient-reported outcomes (e-PROs) in pediatric oncology may be useful to track patients' symptoms and quality of life (QoL). However, implementation in the clinical setting is limited and few studies have examined child and parent perspectives on e-PRO usage. OBJECTIVES: This brief report aims to explore child and parent perspectives on the benefits of using e-PROs to routinely report on symptoms and QoL. METHODS: We analyzed qualitative data embedded within the PediQUEST Response trial, a randomized controlled trial aimed at early palliative care integration for children with advanced cancer and their parents. Study dyads, made up of a child and their parent, completed weekly surveys assessing symptoms and QoL for 18 weeks, and were invited to participate in an audio-recorded exit interview to share study feedback. Interview transcripts were analyzed with a thematic analysis approach, with emergent themes centered on the benefits of e-PRO usage reported here. RESULTS: Of 154 total randomized participants, we collected 147 exit interviews representing 105 child participants. Interviewed children (n=47) and parents (n=104) were mostly White and non-Hispanic. Two predominant themes emerged regarding e-PRO benefits:1) raised reflection and awareness of self and others' experiences, and 2) increased communication and connection between parents and children or between study dyads and care teams through survey prompted discussion. CONCLUSION: Advanced pediatric cancer patients and their parents found benefit in completing routine e-PROs as they promoted greater reflection and awareness and increased communication. These results may inform further integration of e-PROs in routine pediatric oncology care.

Adaptation of the Day100 Talk communication intervention for Spanish-speaking families of children with cancer.

The Day100 Talk (Day100) bridges communication gaps between parents and clinicians early in pediatric cancer care through an interprofessional family conference facilitated by structured tools. We aimed to understand communication challenges and facilitators and to adapt Day100 for Spanish-speaking parents. We interviewed Spanish-speaking parents with limited English proficiency, Spanish-English medical interpreters, and clinicians to gather communication experiences and adapt Day100. Results showed that communication difficulties were precipitated by linguistic and cultural differences, nonvisual technologies, and limited spontaneous communication. Interpreters enhanced communication as linguistic and cultural brokers. Nonverbal cues also facilitated communication. Participants offered recommendations to adapt Day100 for future study.

A single-site pilot feasibility randomized trial of a supportive care mobile application intervention for patients with advanced cancer and caregivers.

PURPOSE: Mobile health interventions can improve patient care. We developed the Digital Supportive Care Awareness and Navigation (D-SCAN) application (app) to facilitate symptom monitoring and use/awareness of cancer supportive care resources. This study tested feasibility, usability/satisfaction, and preliminary efficacy of D-SCAN. METHODS: We randomized 50 patients with advanced cancer to receive the D-SCAN intervention or usual care; 10 caregivers also received D-SCAN. The primary feasibility outcome was determined by weekly symptom survey completion and end of study procedures. We assessed secondary outcomes including usability/satisfaction, awareness/use of supportive care resources, patient activation, and quality of life via various questionnaires including the Net Promoter Score (NPS), Patient Activation Measure (PAM-13), Functional Assessment of Cancer Therapy-General (FACT-G), and Caregiver Oncology Quality of Life (CarGOQOL) questionnaire. RESULTS: Seventy-six percent of intervention patients met feasibility criteria, exceeding our pre-determined threshold of 75%. Usability/satisfaction by NPS was high, at 14.3% and 12.5% for patients and caregivers, respectively. Intervention patient and caregiver resource awareness increased by a mean of 3.7 (p = 0.27) and 4.1 items, respectively. Supportive care resource utilization increased by a mean of 0.8 items for intervention patients (p = 0.70) and 0.6 for caregivers. PAM-13 increased by a mean of 1.6 for intervention patients (p = 0.65). FACT-G increased by a mean of 1.1 for intervention patients (p = 0.91), and CarGOQoL increased by a mean of 2.2 (p = 0.41). CONCLUSION: D-SCAN is a feasible, usable, and satisfactory intervention for augmenting patient and caregiver supportive care. Further testing is necessary to formally assess D-SCAN's efficacy and impact on patients and caregivers. CLINICAL TRIAL REGISTRATION NUMBER: NCT03628794. Registered on August 14th, 2018.

Risk Factors for Stunting in Children under the Age of 5 in Rural Guatemalan Highlands.

Background: Previously, a study conducted by UNICEF found that malnutrition affects approximately 80% of the indigenous children in Guatemala. Objective: Identify prevalence and risk factors for stunted growth in communities surrounding Lake Atitlán, Guatemala. Methods: Height-for-age measurements of children under the age of five, N = 84, determined stunting prevalence and presumed burden of malnutrition in this region of the Guatemalan highlands. Mothers of a subset of this sample, N = 29, were interviewed to assess factors contributing to stunting. Analysis assessed the following risk factors: inadequate nutrition, increased infectious disease risk, high rate self-report illness, inadequate breastfeeding, and inadequate utilization of prenatal care. Findings: The majority of children under the age of five were stunted (65.6%) and likely malnourished. ANOVA analysis showed significant differences in mean height-for-age Z scores (HAZs) between groups with and without adequate nutrition (F = 7.069, p = 0.013), as well has with and without high rates of self-report illness (F = 6.894, p = 0.014). Both groups with inadequate nutrition (mean HAZs = -2.9, 95% CI = [-3.58, -2.24]) and high rates of self-report illness (mean HAZs = -2.8, 95% CI = [-3.13, -2.38]) had mean HAZs that are indicative of stunting. No other risk factors were associated with stunting. Conclusion: These pilot study results offer methods by which to obtain baseline data for assessing nutritional and public health interventions to improve stunting and malnutrition status as well as the health outcomes of children in rural, indigenous communities.