A qualitative assessment of adolescent perspectives on patient education in the outpatient setting

Objective To explore adolescent perspectives on the content and delivery of anticipatory guidance (AG), both during and after outpatient visits, in order to develop targeted resources and educational material for adolescent patients. Methods Semi-structured phone interviews among patients ages 12 to 21 seen between May-July 2021 at four outpatient sites of NewYork Presbyterian Hospital were recorded, transcribed and analyzed using thematic analysis. Content domains included attitudes toward and preferences around AG, discharge instructions and patient education resources. Results Twenty-eight of 156 recruited patients completed interviews; 52% received an After Visit Summary (AVS); of the 48% who did not receive it, half of them expressed interest in receiving one. Themes included positive perceptions of the AVS, patient-physician communication, multimodal delivery of educational materials, and critical discussion topics such as mental health and nutrition. Conclusion Adolescents value the AVS and prefer multimodal materials and topics that are specifically geared towards them, rather than their caregivers. Innovation This study is the first to explore adolescent perspectives on AG and after-visit informational materials. These findings may help more effectively reach, educate and engage adolescent patients in the primary care setting by guiding the focused development of patient-centered instructions and resources.


Introduction
National pediatric organizations recommend annual adolescent outpatient visits for necessary screening, counseling and promotion of healthy behaviors [1,2]. However, studies estimate only 38% of adolescents receive their annual preventative visit, the lowest rate of primary care use among all age groups in the United States [3]. Comprehensive anticipatory guidance (AG), which is timely, relevant, and developmentally-appropriate advice around emerging issues the patient and family are likely to face, is infrequently delivered to adolescents during preventative visits [2][3][4][5][6][7][8][9]. Providers must develop efficient and patient-centered ways of delivering prioritized information to improve adolescent engagement with the healthcare system, as health services for adolescents are poorly suited to meet their needs [5,6,10,11]. Numerous barriers to obtaining regular care exist, including adolescents' lack of interest in and knowledge about the necessity and benefit of these preventative visits [12].
The conclusion of outpatient visits is an opportunity for providers to summarize important takeaways and share information and resources that can be referenced by patients after the visit. The After-Visit Summary (AVS) is a tool through the electronic medical record that provides relevant and actionable take-home information, including diagnoses, medications, future appointments, and often patient-specific anticipatory guidance. The AVS has been proven to enhance patient engagement, and retention and comprehension of information from the visit in certain populations [13][14][15]. Based on this, the Centers for Medicaid Services recommend provision of an AVS following all healthcare encounters [16].
Adolescents' attitudes toward, perceived utility of, and engagement with the AVS is largely unknown, as previous studies have focused on older patient populations [13,14,17]. Overall, research regarding the delivery of AG both during and after adolescent wellness visits is limited [5,6]. Some studies have assessed adolescent and parent preferences for topics they would like to discuss at clinic visits [18,19], but there is a paucity of research exploring perspectives on provision of AG and health information.
Our study sought to explore adolescent perspectives on the content and delivery of AG, both during and after outpatient visits, in order to develop targeted resources and educational material for adolescent patients.

Methods
Between May-June 2021, adolescents between the ages of 12 to 21 who were at any of the four NewYork Presbyterian community-based Ambulatory Care Network (ACN) practices in Northern Manhattan were recruited. Adolescents seen for annual well or problem-based follow up visits were included, while those seen for urgent or nurse-only visits were excluded. These ACN practices serve approximately 20,000 pediatric patients annually who are largely publicly-insured (∼71%) and with low-income (∼24% with <$15,000 annual household income) [20].
This study was approved by Columbia University Medical Center's IRB. Participation was voluntary, and eligible participants and parents were mailed a study information sheet with the research team's contact information to opt out if desired. Semi-structured patient phone interviews were conducted by one member of the study team (MK) for patients that agreed to participate. MK requested to speak to the adolescents directly and confirmed they were in a private space, as to ensure no parental presence.
Self-determination theory guided the development of the semistructured interview guide [21]. Interview guide topics focused on the concepts of adolescent autonomy, competence (assessed by preferred educational topics), and relatedness (with adolescent perceptions of physician communication as a proxy).
After initial development of the interview guide, the study team made iterative revisions to increase clarity and focus on concepts. The guide was finalized after review by both adolescent medicine specialists and general pediatricians to ensure expert consensus. Final interview domains included attitudes toward and preferences around the content and delivery of AG, which included education provided during the visit and resources e.g. the AVS utilized post-visit. Audio interview recordings were transcribed by two study team members (NM & MK).
Transcribed and deidentified interviews were uploaded to the NVivo software platform (Version 12). Using thematic analysis [22], the team identified patterns and two primary analysts developed a code book and applied codes. Disagreement was resolved through review and discussion, resulting in high inter-coder agreement (99.7%) and moderate inter-coder reliability (k=0.45). Themes were identified and interpreted for understanding.

Results
Of 156 eligible patients from the four practices, 28 patients (17.9%) were successfully interviewed, 65 (41.6%) did not answer and 63 (40.4%) declined. The majority of participants were English-speaking (92.9%), Hispanic (78.5%), and female (64.3%) ( Table 1). The median interview length was 6.2 minutes, ranging from 4.9 to 15.2 minutes. Many patients (52%) reported receiving an AVS, and half of those who did not receive one responded they would have liked to.
The main themes identified were around the content and delivery of anticipatory guidance, and more specifically included perceptions of the AVS, patient-physician communication, patient education methods and critical discussion topics (Table 2). Sub-themes within perceptions of the AVS were benefits and disadvantages of the AVS including adolescents' perceptions on whether or not the AVS would help their understanding of their health. Those within patient-physician communication included comprehensive visits, physician communication, and adolescent autonomy. These sub-themes detailed adolescent perspectives on communication with providers during the visit and whether it was targeted toward them or their caregivers. Patient education methods encompassed adolescents' preferences to learn using electronic resources, paper resources or their own resources both during and after their visits. The final theme of critical discussion topics included anticipatory guidance content that adolescents desired to discuss, ranging from mental health and nutrition to administrative needs such as school forms.

Discussion
These findings revealed important preferences and priorities of adolescents around the information, education and materials received in the outpatient setting. Given the known gap in care delivery [2][3][4][5], the satisfaction these adolescents had with the comprehensiveness of their visits and the high rate of AVS receipt, incorporating an AVS with timely and appropriate resources and information is critically important. While adolescents have a positive view of the AVS, there continues to be a gap in use of this effective tool [17]. Additionally, adolescent participants were focused on topics including mental health, nutrition and administrative needs. While this is in contrast to prior literature that has shown adolescents to be interested in a broad range of topics, though many studies focused on parental preferences [18,19], it is consistent with the current adolescent mental health crisis [23]. Highlighting these topics during the visit or in the AVS may help to further engage adolescent patients.
Adolescent preference for varied types of electronic and paper resources is consistent with previous literature emphasizing the need for multimodal methods of health information delivery [18,24]. With the increasing use of electronic and personally-curated resources [25], it is imperative providers compile accessible and reliable information for this population. This could be achieved through the use of tools such as the AVS and a focus on content deemed most important by patients, with each topic likely requiring specific communication avenues. By consistently providing adolescents with more targeted and patient-centered guidance, providers can expect to see greater retention of information [6], healthier behaviors and overall improved health outcomes. While the impact of the AVS on patient education and resources has been explored in other patient populations, there remains a need to improve understanding in adolescents. With a greater understanding of adolescent perceptions and needs, providers can give information to help improve adolescent engagement with their physicians and healthcare overall.
This study is limited as it is a single-institution and may not be generalizable to the broader adolescent population. However, it does include the perspectives of a predominantly Hispanic, low-income and publiclyinsured group of adolescents, which is essential as this is a population with particularly low rates of annual preventive visits [3,26]. The response rate in our study was low, and exacerbated by parents not allowing their adolescent children to participate, and thus we may not have fully captured the perspectives of individuals who have less engagement with the healthcare system.

Innovation
Adolescents overall have low engagement with healthcare [2][3][4][5][6], yet there is a constant need to support their growing autonomy. Our results support a shift toward adolescent patient-centered care, as other improvement initiatives rarely apply adolescents' self-reported experiences within healthcare [2]. This study demonstrates innovation as perceptions of educational materials e.g. the AVS, have been explored in other age groups, but not among adolescents. Given that adolescents themselves are the primary recipients of this education, their perspectives must be carefully considered.
Adolescent perspectives may help more effectively engage, educate and support patients by guiding the development of targeted instructions and resources. Next steps include determining the most impactful modes of information delivery, exploring the effectiveness of various elements of patient education in modifying adolescent behaviors, as well as comparing adolescent perceptions with those of their parents.

Conclusion
This qualitative study demonstrated positive perceptions of the AVS among adolescents in an urban ambulatory setting. Adolescent participants described their preference for multimodal delivery of educational material, specifically related to mental health and nutrition. Insights from adolescents can inform the development of future healthcare resources. Topics not to Discuss (Respondents reported topics they would like to discuss less with their providers) None actually. There weren't any things that I wanted to discuss less. I believe that at our meeting, at our appointment, we discussed all of the things that we needed to discuss. We didn't discuss things less because they were discussed at the right amount that they had to be. (15,Female)