Abstract

Although pediatric cancer survival rates have improved, cancer is still the leading cause of death by disease among children in the United States. With nearly 16,000 new diagnoses each year of children having an average age of six years old, there is still much to be done to improve survival rates among children diagnosed with cancer. Additionally, clinical outcomes can be greatly improved by first understanding the patient perspective and, consequently, there is a need to understand the pediatric cancer patient experience. Interest in the analysis of patient-reported outcome (PRO) measures, including those specific to patient experience, has grown in recent years as attempts are made to understand and assess latent (i.e., unobserved) traits such as quality of life. While most traditional PRO measures involve lengthy and costly surveys that are limited in scope, posts on social media platforms are frequently lauded as more authentic, unbiased measures of patient experience. While many previous studies have utilized Twitter as a source for patient experience data that is not easily captured by traditional PROs, very few studies have examined the use of Twitter data to explore and better understand the experience of pediatric cancer patients specifically. Lexicon-based sentiment analysis of Twitter data was used both to examine the pediatric cancer patient experience as well as to compare the attitudes, perceptions, and overall impressions of individuals with St. Jude experiences to those with more general experiences. Results indicated that patients reflected on their care with more relative negativity when speaking of experiences other than St. Jude. While there were some notable differences between the two comparison groups, the sentiment of both was still mostly positive. Pediatric oncology differs greatly from adult oncological care and, thus, the proposed use of sentiment analysis with patient social media posts serving as authentic PRO data likely differentiates more between medical providers and clinical care settings when assessing adult patient experience. Despite limitations, this exploratory study suggests that Twitter can be utilized as a source for authentic, real-time patient experience data that will improve overall care and better clinical outcomes, even among the pediatric cancer patient population.

Highlights

  • While overall cancer death rates have decreased an average of 1.5% per year from 2013 to 2017 with notable decreases observed in common cancers such as lung and colorectal, the most recent Annual Report to the Nation on the Status of Cancer reveals that cancer incidence rates among children increased during this same time period [1]

  • While most traditional patient-reported outcome (PRO) measures involve lengthy and costly surveys that are limited in scope, posts on social media platforms are frequently lauded as more authentic, unbiased measures of patient experience

  • Especially among pediatric cancer patients, the patient perspective is critical to ensuring desirable clinical outcomes during and after treatment

Read more

Summary

Introduction

While overall cancer death rates have decreased an average of 1.5% per year from 2013 to 2017 with notable decreases observed in common cancers such as lung and colorectal, the most recent Annual Report to the Nation on the Status of Cancer reveals that cancer incidence rates among children increased during this same time period [1]. As the number of children experiencing cancer as well as the expected survival times for those children increase, it is imperative to understand the pediatric cancer patient experience. Patient-Reported Outcome (PRO) measures quantify patient experience and perspective, assessing how patients feel and function while receiving care. Static PRO measures are time-consuming and collect very limited information about the entirety of the patient experience, oftentimes leading to inadequate buy-in from patients and clinicians. The purpose of this study was to explore the utility of Twitter as a source of more authentic PRO data for pediatric cancer patients and to understand the experience of these patients both at the most well-known pediatric treatment and research facilities (i.e., St. Jude Children’s Research Hospital) and overall

Objectives
Methods
Results
Conclusion
Full Text
Published version (Free)

Talk to us

Join us for a 30 min session where you can share your feedback and ask us any queries you have

Schedule a call