P0009 - Adolescents’ and Young Adults’ Satisfaction with and Understanding of Medical Notes from an Inpatient Psychiatry Unit

Background: Since its inception in 2012, the OpenNotes initiative has been broadly adopted, giving >40 million adult patients access to their medical documentation. Both providers and adult patients report increased trust, communication and collaboration as a result of medical documentation sharing. In contrast, OpenNotes has had limited expansion to adolescent patients. Since February 2018, our pediatric institution has default-released medical notes to patients >=12 years. Currently, 90% of medical notes are shared with adolescents, although medical documentation is withheld from patients in certain care settings (i.e. psychiatry, child abuse) or if the provider deems content sensitive.
We previously evaluated medical note sharing in adolescents and young adults (AYA) with chronic gastrointestinal and liver disease and demonstrated good comprehension and satisfaction with note content. In the current work, we sought to evaluate whether AYA hospitalized at our inpatient psychiatric ward might find similar benefit with note sharing.

Methods: AYA hospitalized at our institutional psychiatric ward were recruited between October 2019 and December 2019. Participants met the following inclusion criteria: 1) admission to the inpatient psychiatry ward and 2) ability to read and write in English. Once parental consent and participant assent were obtained, participants were given their most recent progress note to read (typically from the same day or day before). They were then surveyed on their understanding of and satisfaction with the description of their medical health issues and reason(s) for inpatient admission/care in their note on a 0 (no understanding or satisfaction) to 10 (complete understanding or satisfaction) point scale, with the option to suggest edits. Participants were also asked to complete the short Test of Functional Health Literacy in Adults to assess their functional health literacy. The attending psychiatry provider who authored the note was surveyed at least the day following AYA reading their note to assess the impact note sharing had on subsequent inpatient counseling sessions and therapy compliance.

Results: Twenty AYA were recruited for participation. All but one participant demonstrated adequate functional health literacy. The majority of participants comprehended their medical note, reporting mean (SD) understanding scores of 8.5 (1.2). Similarly, participants were satisfied with the content of their note, reporting mean (SD) scores of 8.6 (1.0) and 9.0 (1.3) for description of their mental health issues and reasons for inpatient admission/care, respectively. Six participants suggested edits to their note; none cited confidentiality concerns. The psychiatry provider reported that note sharing had an overall positive or negligible effect on inpatient counseling sessions and therapy compliance.

Conclusion: Our data suggest that AYA with active behavioral health concerns understand and express satisfaction with their medical documentation. While initial results are promising, continued research is necessary to ascertain the ramifications of note sharing in these vulnerable youth.