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Most patients thought that reading notes improved their care experiences. A small subset of patients experienced increased distress. As reading notes becomes a routine part of the patient experience, physicians might want to elicit and address concerns that arise from notes, thereby further engaging patients in their care.

Purpose Shared decision-making in acute myeloid leukemia (AML) requires understanding patients’ longitudinal experiences of illness, but little is known about the impact of remission status on patient-reported outcomes (PROs). We aimed to explore the association between remission status and PROs 6-12 months following induction chemotherapy. Methods Forty-two patients completed three validated instruments characterizing symptom burden (Patient Care Monitor v2.0), distress (NCCN Distress Thermometer), and QOL (FACT-Leu), as part of a longitudinal observational study. We used regression models to explore the relationship between remission status and PROs, and explore differences by initial disease type (de novo versus secondary/relapsed AML). Results Those with secondary or relapsed AML at study onset had marked impairments in all measures compared to de novo AML patients. After 6 months, their mean distress score was 4.8 (≥4.0 warrants intervention), they reported a mean 14.1 moderate/severe symptoms, and had a mean QOL score of 113.6, compared to 1.0, 1.7, and 155.2, respectively, for those with de novo AML (p <.0001). Similarly, patients in relapse had a mean distress score of 5.3, a mean of 12.8 moderate/severe symptoms, and a mean QOL score of 113.4, compared to 1.8, 5.7, and 143.8, respectively, among those in remission (p<0.005). These patterns persisted after adjusting for baseline differences (p < .0001). Conclusion Remission status is associated with markedly better patient well-being in AML. Patients with secondary or relapsed AML face severe symptom burden, distress, and QOL issues after induction. Interventions are needed to improve AML patients’ experiences of illness.

33 Background: Electronic medical record systems and patient portals increasingly allow patients direct access to their clinicians’ notes.While most believe that open notes benefit patients, some suggest negative consequences. Little is known about cancer patients’ experiences reading their own medical records outside of the primary care setting. We aimed to describe the experiences of patients with advanced cancer who read their own cancer care notes. Methods: We recruited 20 adult patients with metastatic or incurable cancer who were receiving active cancer treatment to participate in semi-structured qualitative interviews. The interview included four segments: assessing patients' overall experience reading notes, discussing how notes affected their cancer care experiences, having them read a real note with the interviewer, and making suggestions for improving notes. We used a constant comparison approach to analyze the qualitative data. Results: Four main themes emerged; patients reported that notes: (a) increased comprehension, (b) ameliorated uncertainty, relieved anxiety, and facilitated control, (c) increased trust, and (d) for a subset, increased anxiety. Patients described increased comprehension, as notes refreshed their memory and clarified their understanding of visits. Notes addressed uncertainty and relieved anxiety, in part because enhanced comprehension mitigated the unfamiliarity of cancer. They facilitated control, empowering patients to ask more questions to clinicians. The transparency of notes also increased the trust patients have in their clinicians. For a subset of patients, however, notes were emotionally difficult to read and raised concerns. Patients consistently identified medical jargon and repetition in notes as areas for improvement. Conclusions: Our findings suggest that most patients felt that reading notes improved their care experiences. A small subset experienced increased distress from “open notes.” As reading notes becomes a routine part of the patient experience, it is important for physicians to elicit and address concerns that arise from the notes, further engaging patients in their care.

“The barriers and paths forward for integration of palliative care for patients with cancer”

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