Open Notes Experiences of Parents in the Pediatric ICU.

OBJECTIVE: We examined how parents experience and navigate open access to clinical notes ("open notes") in their child's electronic health record and explored their interactions with clinicians during an ICU admission. METHODS: We performed a qualitative analysis using semistructured interviews of English-speaking parents who accessed their child's clinical notes during a pediatric ICU (general or cardiac) admission. We included patient-parent dyads with an ICU admission ≥48 hours between April 2021 and December 2022, note access by proxy timestamp during the ICU course, and either patient age <12 years or incapacitated adolescent ages 12 to 21 years. Purposive sampling was based on sociodemographic and clinical characteristics. Phone interviews were audio-recorded, transcribed, and analyzed using inductive thematic codebook analysis. RESULTS: We interviewed 20 parents and identified 2 thematic categories, outcomes and interactions, in parents accessing clinical notes. Themes of outcomes included applied benefits, psychosocial and emotional value, and negative consequences. Themes of interactions included practical limitations and parental approach and appraisal. The ICU context and power dynamics were a meta-theme, influencing multiple themes. All parents reported positive qualities of note access despite negative consequences related to content, language, burdens, and lack of support. Parents suggested practice and design improvements surrounding open note access. CONCLUSIONS: Parental experiences with open notes reveal new, unaddressed considerations for documentation access, practices, and purpose. Parents leverage open notes by negotiating between the power dynamics in the ICU and the uncertain boundaries of their role and authority in the electronic health record.

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.

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.

Clofarabine monotherapy in aggressive, relapsed and refractory Langerhans cell histiocytosis.

Over 50% of patients with systemic LCH are not cured with front-line therapies, and data to guide salvage options are limited. We describe 58 patients with LCH who were treated with clofarabine. Clofarabine monotherapy was active against LCH in this cohort, including heavily pretreated patients with a systemic objective response rate of 92.6%, higher in children (93.8%) than adults (83.3%). BRAFV600E+ variant allele frequency in peripheral blood is correlated with clinical responses. Prospective multicentre trials are warranted to determine optimal dosing, long-term efficacy, late toxicities, relative cost and patient-reported outcomes of clofarabine compared to alternative LCH salvage therapy strategies.

An Overarching Framework for the Ethics of Artificial Intelligence in Pediatrics.

This Viewpoint discusses the use of artificial intelligence in pediatrics.

Factors affecting the ability of patients with complex vascular anomalies to navigate the healthcare system.

BACKGROUND: Vascular anomalies (VAs) are rare congenital disorders that can cause pain, disfigurement, coagulopathy, asymmetric growth, and disability. Patients with complex VAs experience multiple barriers to accessing expert care. It is imperative to understand which factors support these patients' ability to navigate the healthcare system. RESULTS: We surveyed adult patients with VAs using previously validated measures, recruiting participants from five patient advocacy groups and multidisciplinary VA clinics. The primary outcome was self-reported ability to access needed medical care, using the "Navigating the Healthcare System" subscale of the Health Literacy Questionnaire. We evaluated factors associated with the ability to navigate the healthcare system using multivariate linear regression (n = 136). We also performed an exploratory model that included the primary care doctor's knowledge of VAs for the subset of participants with a primary care doctor (n = 114). Participants were predominantly women (n = 90, 66%), White and non-Hispanic (n = 109, 73%), and college-educated (n = 101, 73%). Most participants had PIK3CA-Related Overgrowth Spectrum (n = 107, 78%). Most participants reported that navigating the healthcare system was "sometimes" or "usually difficult" (mean score 16.4/30, standard deviation 5.6). In multivariate linear regression, ability to navigate the healthcare system was associated positively with quality of information exchange (ß = 0.38, 95% Confidence Interval (CI) 0.22 to 0.55, p <.001) and whether patients had VA specialists (ß = 2.31, 95% CI 0.35 to 4.28, p =.021), but not associated with patient self-advocacy, anxiety, education, age, race and ethnicity, gender, or having a primary care doctor. In exploratory analysis of participants with primary care doctors, ability to navigate the healthcare system was positively associated with quality of information exchange (ß = 0.27, 95% CI 0.09 to 0.45, p =.004), having a VA specialist (ß = 2.31, 95% CI 0.22 to 4.39, p =.031), and primary care doctors' VA knowledge (ß = 0.27, 95% CI 0.04 to 0.50, p =.023). CONCLUSION: Patients with VAs struggle to navigate the healthcare system. High-quality information from clinicians and more knowledgeable primary care doctors might help patients to access needed care. Relying on patient self-advocacy is insufficient. Future efforts should focus on patient-directed and clinician-directed educational interventions. Additionally, future work should assess the structural barriers that impede healthcare access for these patients.

Provider Perspectives on Adolescent Confidentiality and the Electronic Health Record Postimplementation of the 21st Century Cures Act Final Rule.

PURPOSE: The 21st Century Cures Act Final Rule mandates increased transparency and accessibility of the Electronic Health Record (EHR). This mandate has exacerbated tensions in adolescent healthcare between transparency and confidentiality. This study evaluates clinicians' perspectives on how well the EHR maintains confidentiality for adolescents in the post-Cures Act era. METHODS: A web-based survey was distributed via the national listserv of the Society for Adolescent Health and Medicine in March-April 2022. English-speaking members practicing in the Unites States who used an EHR to document clinical visits with minors were eligible. The survey included questions about EHR training, features, and approach to information sharing with adolescent patients and proxies. RESULTS: Participants included 97 respondents from 32 states. Most participants were physicians (98%) and identified themselves as attending (89%). Several EHR vendors were represented, although the majority used Epic (76%). As has been seen in prior studies, there remains significant variability in approaches to patient portal access for adolescent patients and their adult proxies. Respondents report that training around adolescent-specific privacy issues remains infrequent and is perceived as inadequate. Adolescent providers, despite feeling confident in navigating the EHR generally, continue to report low rates of confidence in how well their EHR may protect adolescent privacy. DISCUSSION: Clinicians have persistent concerns about adolescent confidentiality postimplementation of the 21st Century Cures Act. Sharing sufficient information while protecting adolescent confidentiality might require standardization by EHR vendors to improve granularity of proxy information sharing. Healthcare institutions must also commit to training providers on management of adolescent confidentiality.

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.

Designing and validating novel communication measures for pediatric, adolescent, and young adult oncology care and research: The PedCOM measures.

BACKGROUND: High-quality communication in pediatric and adolescent cancer is the standard of care. Yet, we lack pediatric-specific communication measures. We designed self-report and caregiver-report communication measures for use in pediatric oncology settings. METHODS: We recruited adolescent and young adults (AYAs; 12-24 years) with cancer and parents of children and AYAs between 1 month post-diagnosis and 2 months after completing treatment. Participants completed measures including 58 questions addressing eight previously characterized communication functions. For each function, we conducted factor analysis, and assessed reliability and construct validity. Based on psychometric properties, we created final long-form (31 items) and short-form (eight items) communication measures (PedCOM) for both self- and caregiver-report. RESULTS: Participants included 200 parents and 88 AYAs. The final 31-item and eight-item PedCOM measures for parents and AYAs demonstrated good unidimensional model fit. Each communication function (e.g., building relationships) demonstrated high reliability, coefficient alphas ranged from .83 to .93 for parents and .85 to .93 for AYAs. The overall 31-item and eight-item PedCOM measures also demonstrated high reliability (alphas >.9). For construct validity, PedCOM-Parent-31 and PedCOM-Parent-8 correlated positively with satisfaction with care, trust, emotional self-management, and decisional satisfaction, and negatively with anxiety and caregiver burden. PedCOM-AYA-31 and PedCOM-AYA-8 correlated positively with satisfaction with care, trust, emotional self-management, symptoms self-management, and decisional satisfaction, and negatively with anxiety. DISCUSSION: We developed valid and reliable measures of communication functions for parents and AYAs with cancer. These measures can support organizations and stakeholder groups that are striving to improve the quality of cancer care.

Mental and physical health of adult patients affected by complex vascular anomalies.

OBJECTIVE: We examined care and communication factors that affect physical and mental health for patients with complex vascular anomalies (VAs). METHODS: VA patients (N = 135) completed an online survey with measures of ability to navigate healthcare, quality of information exchange, perceived stigma, and demographic variables. We performed linear regression to determine if these variables were associated with mental and physical health. RESULTS: Physical and mental health were associated with information exchange (ß = .41, 95% CI=.12 -.69; ß = .33, 95% CI=.04 -.62), stigma (ß = -.49, 95% CI=-.74 to -.24; ß = -.63, 95% CI=-.89 to -.38), and education (ß = 4.00, 95% CI=.63 - 7.38; ß = 3.44, 95% CI=.06 to 6.82). Ability to navigate healthcare was associated with health outcomes in our bivariate model, but not significant in a multivariate model. CONCLUSION: The results underscore the importance of effective information exchange. Poor information exchange was associated with worse physical and mental health. VA patients with lower education levels and higher perceived stigma reported poorer health outcomes and likely face many struggles accessing care. PRACTICE IMPLICATIONS: Patient-centered information exchange between clinicians and patients is needed to address unmet information needs. Clinicians can also reduce perceived stigma by validating patients, and should provide resources to reduce disparities related to education.

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.

Identifying contributors to disparities in patient access of online medical records: examining the role of clinician encouragement.

Objective: The aim of this study was to understand the influence of clinician encouragement and sociodemographic factors on whether patients access online electronic medical records (EMR). Materials and Methods: We analyzed 3279 responses from the Health Information National Trends Survey 5 cycle 4 survey, a cross-sectional, nationally representative survey administered by the National Cancer Institute. Frequencies and weighted proportions were calculated to compare clinical encouragement and access to their online EMR. Using multivariate logistic regression, we identified factors associated with online EMR use and clinician encouragement. Results: In 2020, an estimated 42% of US adults accessed their online EMR and 51% were encouraged by clinicians to access their online EMR. In multivariate regression, respondents who accessed EMR were more likely to have received clinician encouragement (odds ratio [OR], 10.3; 95% confidence interval [CI], 7.7-14.0), college education or higher (OR, 1.9; 95% CI, 1.4-2.7), history of cancer (OR, 1.5; 95% CI, 1.0-2.3), and history of chronic disease (OR, 2.3; 95% CI, 1.7-3.2). Male and Hispanic respondents were less likely to have accessed EMR than female and non-Hispanic White respondents (OR, 0.6; 95% CI, 0.5-0.8, and OR, 0.5; 95% CI, 0.3-0.8, respectively). Respondents receiving encouragement from clinicians were more likely to be female (OR, 1.7; 95% CI, 1.3-2.3), have college education (OR, 1.5; 95% CI, 1.1-2.0), history of cancer (OR, 1.8; 95% CI, 1.3-2.5), and greater income levels (OR, 1.8-3.6). Discussion: Clinician encouragement of patient EMR use is strongly associated with patients accessing EMR, and there are disparities in who receives clinician encouragement related to education, income, sex, and ethnicity. Conclusions: Clinicians have an important role to ensure that all patients benefit from online EMR use.

Vascular Anomalies Care in the United States: A Cross-Sectional National Survey.

OBJECTIVE: To characterize the current distribution, composition, and practice patterns of multidisciplinary vascular anomalies (VAs) teams in the US. STUDY DESIGN: This is a cross-sectional survey of children's hospitals in the US offering VAs care. We approached 142 children's hospitals that provided care for VAs via email. The survey evaluated VA clinic location, medical staffing, research participation, and treatments offered. The survey was administered between October 2021 and July 2022. RESULTS: Participants from 95 eligible hospitals responded to the survey (response rate = 67%). Large areas of the Midwest and Northwest US had no available multidisciplinary VA teams or clinics. Most respondents worked at academic centers (89%), with 66% at a freestanding children's hospital, and 56% reported having a multidisciplinary clinic. Most common physician participants in clinic included hematology-oncology (91%), interventional radiology (87%), dermatology (85%), plastic surgery (81%), and otolaryngology (74%). Only 38% of programs included medical geneticists. Smaller hospitals had fewer medical and ancillary staff and offered fewer therapeutic options. Research was available at most larger institutions (69%) but less commonly at smaller hospitals (34%). CONCLUSIONS: Major portions of the US lack multidisciplinary VA care. Furthermore, VA programs vary in composition and geneticists are absent from the majority of programs. These findings should inform efforts to address disparate access and develop standards of care for multidisciplinary VA care in the US.

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.

Burdens of disease and caregiver burden in complex vascular malformations.

INTRODUCTION: Vascular malformations (VMs) are rare diseases that affect a wide age range of patients and require complicated care and management. The strain these conditions put on patients and their caretakers is not well understood. This study aims to characterize those burdens in young adult patients and parents of patients with VMs to improve communication, health-related quality of life, and caregiver burden. METHODS: We performed semi-structured interviews with patients and parents of patients with VMs. Interviews were conducted via telephone or video-call software, recorded, and transcribed. The transcriptions were analyzed to identify burden themes through multiple rounds of codebook development and refinement. The final codebook was applied to all interviews. RESULTS: Twenty-five young adult patients and 34 parent interviews were performed and led to the identification of four primary themes of disease burden that showed up in almost every interview: burdens of the disease process, logistical and financial burdens, psychological and emotional burdens, and social burdens. Persistent uncertainty was prominent and exacerbated all other burdens as well. DISCUSSION: We found that patients and parents struggle with burdens in a wider breadth of life experiences than have been previously characterized in the literature. They feel stressors of isolation, struggles with their identity, and even traumatic experiences from prior medical encounters. It is critical for providers of these patients and families to be aware of the burdens that they face outside of the immediate medical context. Acknowledging and providing space to address these burdens has the potential to greatly improve therapeutic relationships.

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.