Benefits, Problems, and Motivations for Using the Online Patient Portal in Adolescent Oncology: Interviews With Adolescents and Parents.

Abstract

Purpose: Communication is central to optimizing adolescent cancer care. Online patient portals are widely available tools that support communication. However, the perspectives of parents and adolescents on parental portal access has not been well studied.

Methods: We performed separate semistructured interviews with adolescents with cancer and their parents, recruited from three academic pediatric cancer centers. We performed thematic analysis of benefits, problems, and motivations for parental portal use.

Results: We interviewed 48 parent/adolescent dyads with cancer. Participants described the importance of allowing parents access to their child's portal, related to perceived parental needs and rights. Parental needs related to managing their child's complex medical needs. Parental rights related to their financial support for the child and their obligation to ensure their child's well-being. Although the cancer diagnosis did not change views on parental rights, it did increase parental needs for portal access. Participants described five benefits provided by portals: (1) improving parental knowledge and understanding, (2) supporting care coordination and family self-management, (3) supporting communication, (4) supporting parental roles, and (5) strengthening relationships. Participants described four problems caused by portal access: (1) complexity of portal contents and misunderstanding, (2) emotional distress, (3) loss of privacy, and (4) exacerbating family tensions. Parents described two factors influencing their portal use: (1) user experience, especially onerous enrollment processes, and (2) perceived usefulness of the portal.

Conclusion: Adolescents with cancer and their parents believed that parents should be permitted access to nonsensitive clinical data in the adolescent's portal. Limiting portal access could create extra burdens on parents. Electronic health record companies and hospitals must develop technologies to permit parental access to nonsensitive information through the portal, especially in oncology.