The Importance of Patient Quality of Life
Here at SpellBound, we care a lot about patient quality of life. Our product, ARISE, is frequently used with pediatric cancer patients, and cancer patients experience many symptoms which affect quality of life. So when we started thinking about how to measure the impact ARISE has on cancer patients, we made sure that we were taking quality of life into consideration.
Health-related quality of life (HRQOL) measures help clinicians (and public health officials) understand the burden of disease, and determine the effects of chronic illness, disability, and treatment. The CDC recommends that HRQOL be tracked because:
HRQOL is related to both self-reported chronic diseases (diabetes, breast cancer, arthritis, and hypertension) and their risk factors (body mass index, physical inactivity, and smoking status);
Measuring HRQOL can help determine the burden of preventable disease, injuries, and disabilities, and can provide valuable new insights into the relationships between HRQOL and risk factors;
Measuring HRQOL will help monitor progress in achieving the nation’s health objectives.
In pediatrics, the best measure of HRQOL is collected through the PedsQL. The PedsQL is the measurement model for the Pediatric Quality of Life Inventory and was created by James W. Varni, Ph.D. It is a way to measure health-related quality of life (HRQOL) in healthy children and adolescents as well as in those with acute and chronic health conditions. It is a 23-item scale designed to measure the core dimensions of health as defined by the World Health Organization in their constitution: “Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity." These scales cover physical functioning as well as psychosocial functioning (emotional functioning, social functioning, and school functioning).
In a study conducted in California, the PedsQL4.0 was reliable for distinguishing between healthy children and children with chronic health conditions and was "related to indicators of health care access, days missed from school, days sick in bed or too ill to play, and days needing care.” This means that the PedsQL can be used as a pediatric population health outcome, and help public health officials evaluate outcomes of public health programs, as well as use it as an indicator to identify health disparities and how policy decisions impact health outcomes.
In pediatric cancer, the PedsQL was proven to distinguish between healthy children and children with cancer, and among children on-treatment versus off-treatment. This means that the PedsQL can be used as an outcomes measure not only in clinical practice but also in clinical trials and research.
PedsQL is an important measure, which is why we are using it as an outcome in our NIH-backed research. Our first study was done to understand how feasible it was to use augmented reality with post-surgical pediatric patients as a method of pain management. The study looked at several measures, including the PedsQL (both self-reported and parent-completed PedsQL). While Phase I studies are not powered for outcomes, it was found that “[while] there were no significant differences in preoperative and intraoperative variables except for a slightly (but significantly) higher quality of life score in the augmented reality group.” (p < 0.001) [BJA, Aug. 11, 2022, p. e3]
If a child can use augmented reality as pain management and still report higher quality of life measures, we have found an important tool that could combat the negative long-term effects of opioids and other pharmacological pain interventions, all while kids are having fun. Imagine how this will revolutionize the perception of healthcare and patients’ relationship to their own health and the well-being for the next generation of patients.
Read more about the PedsQL:
https://pubmed.ncbi.nlm.nih.gov/10024117/
https://www.physio-pedia.com/PedsQL
https://www.pedsql.org/pedsqladmin.html
CDC Bibliography of publications on HRQOL: