How do patients and care partners describe diagnostic uncertainty in an emergency department or urgent care setting?

OBJECTIVES: Little is known about how patients perceive diagnostic uncertainty. We sought to understand how patients and care partners perceive uncertainty in an emergency or urgent care setting, where making a final diagnosis is often not possible. METHODS: We administered a survey to a nationally representative panel on patient-reported diagnostic excellence in an emergency department or urgent care setting. The survey included items specific to perceived diagnostic excellence, visit characteristics, and demographics. We analyzed responses to two open-ended questions among those who reported uncertainty in the explanation they were given. Themes were identified using an inductive approach, and compared by whether respondents agreed or disagreed the explanation they were given was true. RESULTS: Of the 1,116 respondents, 106 (10 %) reported that the care team was not certain in the explanation of their health problem. Five themes were identified in the open-ended responses: poor communication (73 %), uncertainty made transparent (10 %), incorrect information provided (9 %), inadequate testing equipment (4 %), and unable to determine (4 %). Of the respondents who reported uncertainty, 21 % (n=22/106) reported the explanation of their problem given was not true. CONCLUSIONS: The findings of this analysis suggest that the majority of patients and their care partners do not equate uncertainty with a wrong explanation of their health problem, and that poor communication was the most commonly cited reason for perceived uncertainty.

Patient portal messages to support an age-friendly health system for persons with dementia.

BACKGROUND: Patient portal secure messaging can support age-friendly dementia care, yet little is known about care partner use of the portal and how message concerns relate to age-friendly issues. METHODS: We conducted a two-part observational study. We first assessed the feasibility of automating care partner identification from patient portal messages by developing and testing a natural language processing (NLP) rule-based classification system from portal messages of 1973 unique patients 65 and older. Second, two independent reviewers manually coded a randomly selected sample of portal messages for 987 persons with dementia to identify the frequency of expressed needs from the 4M domains of an Age-Friendly Health System (medications, mentation, mobility, and what matters). RESULTS: A total of 267 (13.53%) of 1973 messages sent from older adults' portal accounts were identified through manual coding as sent by a nonpatient author. The NLP model performance to identify nonpatient authors demonstrated an AUC of 0.90. Most messages sent from the accounts of persons with dementia contained content relevant to the 4Ms (60%, 601/987), with the breakdown as follows: medications-36% (357/987), mobility-10% (101/987), mentation-16% (153/987), and what matters (aligning care with specific health goals and care preferences)-21%, 207/987. CONCLUSIONS: Patient portal messaging offers an avenue to identify care partners and meet the informational needs of persons with dementia and their care partners.