- PediQUEST Response: PediQUEST — a computerized data collection system – was used to complete a multicentered randomized trial aimed at assessing the effect of routinely providing child-reported symptom and quality-of-life feedback to clinicians and families. The results showed that feedback promotes child psychological wellbeing. PediQUEST is now web-based and is useful in all care settings, including home. Using this adaptation, a strengthened intervention called PediQUEST Response enables the palliative care team to respond to child distress. PediQUEST Response is currently being tested in a multicentered randomized controlled trial.
- Day100: “The Day 100 Talk” is a multidisciplinary, structured conversation led by the pediatric oncology provider in collaboration with the primary psychosocial provider. The pilot study looks to assess the feasibility and acceptability of conducting D100 during early cancer treatment period and explore the feasibility of surveying families who have and who have not participated in a D100 conversation regarding self-reported therapeutic alliance with the frontline oncology provider, prognostic understanding, self-reported parental psychological distress, and self-reported illness uncertainty. The overall goal of this study is to improve patient-provider communication in the early cancer treatment period.
- Young Adult Video Project: The young adult video project is a randomized trial that examines the utility of young adults with advanced cancer and their caregivers watching a video on advanced care planning. The goal of this study is to increase effective advanced care planning and promote shared decision making among adolescents and young adult patients (AYAs). We hope to help AYAs and their caregivers discuss goals of care together to make sure patients receive medical care consistent with their values.
- MyPREF: MyPref is an online survey that utilizes adaptive conjoint analysis in order to identify and quantify patient and caregiver preferences of treatment attributes. As a pilot study, this overall goal is to evaluate the clinical utility and usefulness of this tool in treatment of adolescents and young adult patients with advanced cancer.
- Bereavement: This study aims to better understand what leads to more positive outcomes such as social integration and functioning in bereaved parents. Through surveys, we will be able to provide a comprehensive estimation of the psychosocial sequalae of parents early in the grief process. Ultimately, by identifying child, family, parents, and societal factors associated with early social integration and functioning, we may better identify targets for intervention for parents who demonstrate adjustment difficulties in the initial stages of bereavement.
- HPediQUEST: This study utilizes web-based weekly questionnaires to assess child symptoms during the acute and post-transplant phases. It aims to describe child symptoms and child health related quality of life during stem cell transplant and the subsequent six months.
- SHARE: The shared data and research study aims to create a prospectively collected clinical database with data from pediatric palliative care patients and parents across multiple hospitals. We hope to integrate this data base with a hospital administrative database and explore trajectories over time of patients symptoms, parents affect and distress, parental goals, and hospital costs.