Commentary by Dr Arshia Madni, Attending Physician in Pediatric Palliative Care and Hospitalist Medicine at St Jude Children’s Research Hospital
Feature Article: Miller, K. A., Baird, J., Lira, J., Herrera Eguizabal, J., Fei, S., Kysh, L., & Lotstein, D. (2020). The use of telemedicine for home-based palliative care for children with serious illness: A scoping review. J Pain Symptom Manage.
One of the challenges facing pediatric palliative care providers is continuity of care with all our patients, especially those who don’t have easy access to care. In our practice, we give patients the choice of keeping clinic visits or not to help them maintain better quality of life with more time away from the hospital however, we still want to continue building therapeutic relationships and provide excellent symptom management. Telehealth has been used as a viable option in these circumstances. I chose this scoping review by Miller et al with the hope that I will gain insight into how pediatric telemedicine is being perceived by patients and providers as well as what successful implementation requires.
My home institution expedited the initiation of telehealth early during the pandemic, with some bumps along the way. Challenges faced included, which patients are deemed appropriate for only telehealth visits, navigating this new platform, and teaching families how to use this new technology. This paper by Miller et al does a thorough job of addressing and reporting challenges of telemedicine in pediatric palliative care with a review of the limited literature. Five major themes that emerged: structure of the home-based programs, acceptability of telemedicine as a platform, quality of care, cost and patient reported quality of life. It was promising to see that telemedicine was acceptable to families and clinicians even though it took clinicians a little longer than the families to adjust to this new platform. A huge benefit is decreased cost to families, especially those who must travel. Telehealth could be an avenue to provide more equitable and accessible care for those families who have fewer resources. This increased equity could provide a way to improve health care disparities plaguing our medical system1.
Unfortunately, there isn’t robust data from any of the studies on how effective quality of life, symptom management or psychological support outcomes were. The little data available suggested that quality outcomes were equivalent face to face (FTF) compared to telehealth visits however, fewer goals of care conversations happened via telehealth.
I found this review to be well laid out and particularly found the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework used to conceptualize the themes in these studies easy to navigate. Overall, I came away feeling reassured that telemedicine is a promising platform for the future of pediatric palliative care, especially since it allows us to reach patients who are restricted from traveling either from the pandemic or lack of resources thereby reducing health disparities by making palliative care more accessible to all.
1. Khairat et al. Advancing health equity and access using telemedicine: a geospatial assessment. Journal of the AMIA.2019;796-805. doi:10.1093/jamia/ocz108