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Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study  Veronica.

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Presentation on theme: "Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study  Veronica."— Presentation transcript:

1 Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study  Veronica Dussel, MD, MPH, Liliana Orellana, PhD, Natalie Soto, MD, Kun Chen, PhD, Christina Ullrich, MD, MPH, Tammy I. Kang, MD, MSCE, Jeffrey R. Geyer, MD, Chris Feudtner, MD, PhD, MPH, Joanne Wolfe, MD, MPH  Journal of Pain and Symptom Management  Volume 49, Issue 6, Pages (June 2015) DOI: /j.jpainsymman Copyright © 2015 American Academy of Hospice and Palliative Medicine Terms and Conditions

2 Fig. 1 Methods used in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study—RCT Methods (adapted from Wolfe et al24). 1The PediQUEST Survey (PQ Survey) is an electronic survey that includes the adapted PediQUEST-Memorial Symptom Assessment Scale (PQ-MSAS, which evaluates symptom burden) and the Pediatric Quality of Life Inventory (PedsQL4.0™, which evaluates quality of life). Journal of Pain and Symptom Management  , DOI: ( /j.jpainsymman ) Copyright © 2015 American Academy of Hospice and Palliative Medicine Terms and Conditions

3 Fig. 2 The Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study flow diagram at nine months of follow-up. The figure shows the sampling process and disposition at nine months of follow-up. Indicators used to study pre- and post-inclusion attrition are shown. Level a: shows the target population; Level b: subjects missed and identified by study procedures; Level c: ineligible and eligible subjects; Level d: not approached and approached subjects; Level e: refused and enrolled; Level f: disposition at nine months of follow-up. Journal of Pain and Symptom Management  , DOI: ( /j.jpainsymman ) Copyright © 2015 American Academy of Hospice and Palliative Medicine Terms and Conditions

4 Fig. 3 Families' perceptions, values, and reasons to enroll in or decline the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study. Panel a shows perceptions of enrolled (83/104) and non-enrolled (12/43) families regarding study's consent and decision-making processes, as well as values and reasons underlying their participation decision. Non-enrollees responded to an abridged survey version. Given the low non-enrolled response rate, no statistical testing was conducted. Only items with fewer than 10% missing values are graphed. Panel b presents reasons to enroll or not in the PediQUEST study as reported in open-ended questions (or quantitative items in the five surveys where comments were not provided). More than one-third of the respondents provided more than one reason. Representative quotes from enrolled and non-enrolled respondents are shown. Journal of Pain and Symptom Management  , DOI: ( /j.jpainsymman ) Copyright © 2015 American Academy of Hospice and Palliative Medicine Terms and Conditions

5 Fig. 4 Disposition of patients enrolled in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST [PQ]) Study over nine months of follow-up and feasibility of longitudinal assessment of electronic patient-reported outcomes. Line graph (top): number of study subjects available per week after censoring for: death (red line); death, drop-out, and elimination (green line); death, drop-out, elimination, and administrative censoring (black line). Area graph (bottom): number of eligible PQ opportunities at each time point and the number that resulted in: an administered survey (green area), a not administered survey (purple) where reason for no administration was known; or a missed opportunity (light purple), that is opportunities that were inadvertently missed by research staff. (For interpretation of references to color in this figure legend, the reader is referred to the web version of this article.) Journal of Pain and Symptom Management  , DOI: ( /j.jpainsymman ) Copyright © 2015 American Academy of Hospice and Palliative Medicine Terms and Conditions

6 Fig. 5 Reasons to stay enrolled in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) randomized controlled study. This “word cloud” provides a proportional representation of all open-ended responses to the question “Which was the main factor that kept you in the (PediQUEST) study all the way?” Word size relates to the number of times the word appears. Graph built online using wordle.com application. Journal of Pain and Symptom Management  , DOI: ( /j.jpainsymman ) Copyright © 2015 American Academy of Hospice and Palliative Medicine Terms and Conditions


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