Providing Adolescents with Access to Online Patient Portals: Interviews with Parent-Adolescent Dyads.

OBJECTIVE: To identify perceived benefits, problems, facilitators, and barriers to adolescent online patient portal use. STUDY DESIGN: Qualitative, semi-structured interviews with dyads of parents and adolescents with or without chronic illness. The study team purposively sampled for racial and ethnic minorities and fathers. Three team members then performed thematic analysis of the transcripts, with subsequent dyadic analysis of themes represented by related parents and adolescents. RESULTS: We performed 102 interviews with 51 dyads of parents and adolescents (26 with chronic illness, 25 without chronic illness). Nearly all participants believed that adolescents should be permitted portal access. We identified 4 themes related to portal benefits: improves adolescent's knowledge of health; supports medical self-management and autonomy; strengthens communication and relationships; and supports parental influence. We identified 4 themes related to portal problems: misunderstanding or confusion; emotional distress; strain on relationships; and irresponsible use of portal. Facilitators of portal use included severity of illness, adolescent's curiosity, and ease of technology use. Barriers included lack of awareness or interest, complexity of information, and access difficulties. Twenty adolescents (39%) did not know they could access the portal, and 23 (45%) lacked interest in portals. Parents and adolescents seldom used the portal as a collaborative tool, and instead were engaging with the portal independently. CONCLUSION: Parents and adolescents perceive several benefits and problems with portal use, but many adolescents lack interest in using portals. Adolescent portals represent an underutilized resource to engage adolescents in their care.

Guiding Principles for Adolescent Web-Based Portal Access Policies: Interviews With Informatics Administrators.

BACKGROUND: Web-based patient portals are tools that could support adolescents in managing their health and developing autonomy. However, informatics administrators must navigate competing interests when developing portal access policies for adolescents and their parents. OBJECTIVE: We aimed to assess the perspectives of informatics administrators on guiding principles for the development of web-based health care portal access policies in adolescent health care. METHODS: We interviewed informatics administrators from US hospitals with ≥50 dedicated pediatric beds. We performed a thematic analysis of guiding principles for developing and implementing adolescent portal access policies. RESULTS: We interviewed 65 informatics leaders who represented 63 pediatric hospitals, 58 health care systems, 29 states, and 14,379 pediatric hospital beds. Participants described 9 guiding principles related to three overarching themes: (1) balancing confidentiality and other care needs, (2) balancing simplicity and granularity, and (3) collaborating and advocating. Participants described the central importance of prioritizing the health and safety of the adolescent while also complying with state and federal laws. However, there were differing beliefs about how to prioritize health and safety and what role parents should play in supporting the adolescent's health care. Participants also identified areas where clinicians and institutions can advocate for adolescents, especially with electronic health record vendors and legislators. CONCLUSIONS: Informatics administrators provided guiding principles for adolescent portal access policies that aimed to balance the competing needs of adolescent confidentiality and the usefulness of the portal. Portal access policies must prioritize the adolescent's health and safety while complying with state and federal laws. However, institutions must determine how to best enact these principles. Institutions and clinicians should strive for consensus on principles to strengthen advocacy efforts with institutional leadership, electronic health record vendors, and lawmakers.

Oncology Clinicians' Perspectives on Online Patient Portal Use in Pediatric and Adolescent Cancer.

PURPOSE: Online patient portals represent widely available communication tools in pediatric oncology. Previous studies have not evaluated clinicians' perspectives on portal use, including issues related to access to adolescents' portals. METHODS: We performed semistructured interviews with physicians and advanced practice providers (APPs) who care for children or adolescents with cancer. We performed thematic analysis of benefits, problems, and accommodations related to portal use in oncology. RESULTS: We interviewed 29 physicians and 24 APPs representing 26 institutions. Participants described five themes of benefits provided by portals: (1) empowering adolescents, (2) improving efficiency and accuracy of communication, (3) promoting open and adaptive communication, (4) supporting parents in managing care, and (5) bolstering clinical relationships. Participants described eight themes of problems caused by portal access: (1) creating emotional distress and confusion, (2) increasing workload and changing workflows, (3) threatening adolescent confidentiality, (4) adolescents lacking interest to engage, (5) diminishing clinical relationship, (6) misusing portal messages, (7) diminishing quality of sensitive documentation, and (8) parents losing access to adolescents' records. Participants described three themes related to accommodations they made as a result of portal access: (1) modifying note writing, (2) providing anticipatory guidance about viewing results, and (3) adapting workflows. Some portal functions created either benefits or problems depending on the clinical context. CONCLUSION: Oncologists identified benefits and problems created by portal use, which were sometimes in tension, depending on the clinical context. To make portals useful, we must take steps to mitigate risks while preserving functionality for parents and adolescent patients.

Engaging Adolescents in Using Online Patient Portals.

Importance: Many health care systems offer adolescents access to health information through online patient portals, but few studies have explored how to engage adolescents in using and benefiting from online portals. Objective: To determine how US children's hospitals have attempted to encourage adolescent portal use, barriers to engaging adolescents, and ideal future goals for engagement. Design, Setting, and Participants: This qualitative study performed structured qualitative interviews with informatics administrators from children's hospitals across the US between February and July 2022. Informatics administrators were employed by US health care systems that managed a children's hospital with at least 50 dedicated pediatrics beds. Data analysis was performed from November 2022 to January 2023. Main Outcomes and Measures: This study used thematic analysis of (1) current steps that health care systems had taken to engage adolescents in using their online patient portals and (2) barriers to engaging adolescents and ideal future goals and outcomes of engagement. Results: Among 58 total interviews with 65 informatics administrators who represented 63 hospitals across 58 health care systems, 6 themes of approaches to engaging adolescents in portal use were identified: (1) promoting and educating adolescents about portal enrollment, (2) establishing workflows to support enrollment, (3) seeking and incorporating feedback, (4) creating a culture or environment supporting engagement, (5) increasing portal utility, and (6) limited efforts. Barriers to engaging adolescents in portal use related to either (1) stakeholder investment, interest, and capabilities or (2) intersecting technical, ethical, and legal factors. Participants identified 4 ideal future efforts to engage adolescents: (1) develop adaptable private means of communication with adolescents, (2) use adolescent-centric user design, (3) enhance promotion and education about portal use, and (4) simplify and adapt workflows to encourage enrollment. Participants described 3 ideal outcomes of this future engagement: (1) provide education about current health, (2) prepare for transition to adulthood, and (3) improve digital health education of adolescents. Conclusions and Relevance: In this qualitative study of informatics administrators, children's hospitals across the US were found to have varying degrees of efforts to engage adolescents in using their portals. Most of these efforts focused on supporting adolescent enrollment, but fewer efforts focused on making the portal useful and interesting to adolescents.

Challenges to Developing and Implementing Policies for Adolescent Online Portal Access.

BACKGROUND: After enactment of the 21st Century Cures Act, many health care systems offer adolescents and parents access to electronic health information through online portals. Few studies have evaluated adolescent portal access policies since the implementation of the Cures Act. METHODS: We performed structured interviews with informatics administrators in US hospitals with ≥50 dedicated pediatric beds. We performed thematic analysis of challenges to developing and implementing adolescent portal policies. RESULTS: We interviewed 65 informatics leaders representing 63 pediatric hospitals, 58 health care systems, 29 states, and 14 379 pediatric hospital beds. Most hospitals provided portal access to adolescents (86%) and parents (95%). Filtering of results sent to parental portals ranged widely, with 14% providing unfiltered access, 31% performing minimal filtering for sensitive information, and 43% offering limited access. Portal access policies also varied widely within states. Challenges to developing policies included legislation and compliance issues, tension between confidentiality and usefulness, clinicians' preferences and concerns, limited understanding and investment of institutions in pediatric issues, and limited focus of vendors on pediatric issues. Challenges to implementing policies included technical challenges, educating end-users, potential for parental coercion, harms of bad news, complex enrollment processes, and informatics workforce limitations. CONCLUSIONS: Adolescent portal access policies vary widely across and within states. Informatics administrators identified multiple challenges related to developing and implementing adolescent portal policies. Future efforts should strive to develop intrastate consensus on portal policies and to engage parents and adolescent patients to better understand preferences and needs.

Navigating care for rare diseases: Caregiver and patient advice for families and clinicians managing care for vascular malformations.

OBJECTIVE: Families affected by rare diseases face many challenges finding adequate care and often report poor communication with clinicians. In the current study, we explore patient and caregiver advice for families and clinicians in the context of complex vascular malformations (VMs), a condition that is frequently misunderstood and misdiagnosed. METHODS: We performed semi-structured interviews with 21 adult patients with complex VMs and 24 caregivers of children with VMs. We analyzed the transcripts using thematic analysis. RESULTS: Participants advised patients and caregivers to advocate for care, address mental and emotional well-being, seek social support, and promote self-management and self-care. Participants advised clinicians to show care and concern, show commitment, empower and validate, communicate information clearly, address mental/emotional well-being, acknowledge the broad impact of disease and treatment, acknowledge your limitations, work as a team, and commit to learning. CONCLUSION: Participants' advice revealed challenges related to family-centered communication and patient and caregiver quality of life and demonstrated the importance of self-advocacy and social support. PRACTICE IMPLICATIONS: The result of this study can help newly-diagnosed families overcome challenges related to care and communication. Clinicians can also use the results to support families by offering them our accompanying handout to validate families' experiences and relay this advice.

Communication with parents and young adult patients affected by complex vascular malformations.

BACKGROUND: Vascular malformations (VMs) are rare disorders that can cause pain, coagulopathy, disfigurement, asymmetric growth, and disability. Families affected by complex VMs experience misdiagnosis, limited trustworthy information, delayed or inappropriate treatments, and persistent uncertainty. However, more research is needed to understand the communication experiences of these families during clinical encounters. PROCEDURE: We performed semi-structured interviews with 34 parents of children with VMs (18% men; 82% women; mean age = 41 years) and 25 young adults with VMs (8% men; 88% women; 4% nonbinary; mean age = 29) living in the United States, recruited through four patient advocacy groups. We performed thematic analysis to assess communication experiences, using a previously developed functional model of communication in pediatric oncology as an a priori framework. RESULTS: We identified evidence of eight communication functions previously identified in pediatric oncology: building relationships, exchanging information, enabling self-management, managing uncertainty, responding to emotions, making decisions, providing validation, and supporting hope. Uncertainty was pervasive through participants' experiences and seemed to influence the fulfillment of communication functions. Fewer participants seemed to highlight the role of clinicians in responding to emotions or supporting hope, compared to other communication functions. CONCLUSION: Interviews with parents and young adult patients with VMs provided evidence for eight functions of communication. While exchanging information and building relationships were described by nearly every respondent, supporting hope and responding to emotions were mentioned less frequently. Future studies should develop patient-reported communication measures to quantify the fulfillment of these functions and to identify areas of communication in need of intervention.