Perspectives of Parents, Clinicians, and Administrators on Digital Imaging in Infants at Risk for ROP
Agnieshka Baumritter, MS; Graham E. Quinn, MD, MSCE; Fran Barg, PhD, Andrea Bilger, MPH; Ebony Easley, MPH, Kate Golden, MA; Arnav Shah on behalf of the e-ROP Study Group
Children’s Hospital of Philadelphia, Philadelphia PA
Philadelphia, Pennsylvania, US
Introduction: Demand for telemedicine to detect retinopathy of prematurity (ROP) is growing due to increasing survival of preterm infants and shortage of ROP specialists. Estimates are 20,000-30,000 infants are blind/severely handicapped from ROP annually worldwide.
Methods: Cross-sectional exploratory study in the US consisted of open-ended semi-structured interviews and focus groups with key stakeholders. Purposeful sampling ensured representation of varied, salient perspectives on the integrated ROP experience among users and non-users of ROP imaging. A grounded theory approach was used to derive themes from the narrative data. Open coding was applied to transcripts to identify ROP telemedicine use-relevant concepts. Results were analyzed in NVivo11.
Results: Participants included 4 parents, 5 neonatologists, 12 nurses, 10 ophthalmologists, and 1 administrator; 59% had imaging experience. Perceived retinal imaging advantages included improved communication/integrated care team with clinicians citing consistent care across specialties/institutions, improved decision-making, communication enabling prevention of unnecessary transfers/hospitalizations. Image usefulness emerged across neonatologists, nurses and parents. Disadvantages included increased time, baby’s stress and high imager/image quality dependency.
Discussion: These findings highlight both agreement and differences among clinicians, nurses, parents and hospital administrators in their perceptions of teleretinal imaging for ROP. Understanding these differences is critical to developing implementation strategies for an effective and efficient ROP telemedicine system in the US.
Conclusion: As cost of imaging declines, quality improves and standard grading protocols become available, this research may also be useful in other regions of the world where implementation of ROP programs is being established and access to care by ophthalmologists is limited.
References: •Charmaz, K. 2014. Constructing Grounded Theory, 2nd Ed. SAGE Publications.
•Lynch, G.M. 2016. The use of telemedicine to extend ophthalmology care. JAMA Ophthalmology, online March 24, 2016.
•Quinn GE, on behalf of the e-ROP Cooperative Group.Validity of a Telemedicine System for the Evaluation of Acute-Phase Retinopathy of Prematurity. JAMA Ophthalmology, 132:1178-84, 2014.