Patient-reported outcome and experience domains for diagnostic excellence: a scoping review to inform future measure development.

PURPOSE: "Diagnostic excellence," as a relatively new construct centered on the diagnostic process and its health-related outcomes, can be refined by patient reporting and its measurement. We aimed to explore the scope of patient-reported outcome (PRO) and patient-reported experience (PRE) domains that are diagnostically relevant, regardless of the future diagnosed condition, and to review the state of measurement of these patient-reported domains. METHODS: We conducted an exploratory analysis to identify these domains by employing a scoping review supplemented with internal expert consultations, 24-member international expert convening, additional environmental scans, and the validation of the domains' diagnostic relevance via mapping these onto patient diagnostic journeys. We created a narrative bibliography of the domains illustrating them with existing measurement examples. RESULTS: We identified 41 diagnostically relevant PRO and PRE domains. We classified 10 domains as PRO, 28 as PRE, and three as mixed PRO/PRE. Among these domains, 19 were captured in existing instruments, and 20 were captured only in qualitative studies. Two domains were conceptualized during this exploratory analysis with no examples identified of capturing these domains. For 27 domains, patients and care partners report on a specific encounter; for 14 domains, reporting relates to an entire diagnostic journey over time, which presents particular measurement opportunities and challenges. CONCLUSION: The multitude of PRO and PRE domains, if measured rigorously, would allow the diagnostic excellence construct to evolve further and in a manner that is patient-centered, prospectively focused, and concentrates on effectiveness and efficiency of diagnostic care on patients' well-being.

Use of the patient portal among older adults with diagnosed dementia and their care partners.

INTRODUCTION: Care partners are at the forefront of dementia care, yet little is known about patient portal use in the context of dementia diagnosis. METHODS: We conducted an observational cohort study of date/time-stamped patient portal use for a 5-year period (October 3, 2017-October 2, 2022) at an academic health system. The cohort consisted of 3170 patients ages 65+ with diagnosed dementia with 2+ visits within 24 months. Message authorship was determined by manual review of 970 threads involving 3065 messages for 279 patients. RESULTS: Most (71.20%) older adults with diagnosed dementia were registered portal users but far fewer (10.41%) had a registered care partner with shared access. Care partners authored most (612/970, 63.09%) message threads, overwhelmingly using patient identity credentials (271/279, 97.13%). DISCUSSION: The patient portal is used by persons with dementia and their care partners. Organizational efforts that facilitate shared access may benefit the support of persons with dementia and their care partners. Highlights Patient portal registration and use has been increasing among persons with diagnosed dementia. Two thirds of secure messages from portal accounts of patients with diagnosed dementia were identified as being authored by care partners, primarily using patient login credentials. Care partners who accessed the patient portal using their own identity credentials through shared access demonstrate similar levels of activity to patients without dementia. Organizational initiatives should recognize and support the needs of persons with dementia and their care partners by encouraging awareness, registration, and use of proper identity credentials, including shared, or proxy, portal access.

Palliative Care Research and Clinical Practice Priorities in the United States as Identified by an Interdisciplinary Modified Delphi Approach.

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.

Patient portal interventions: a scoping review of functionality, automation used, and therapeutic elements of patient portal interventions.

Objectives: We sought to understand the objectives, targeted populations, therapeutic elements, and delivery characteristics of patient portal interventions. Materials and Methods: Following Arksey and O-Malley's methodological framework, we conducted a scoping review of manuscripts published through June 2022 by hand and systematically searching PubMed, PSYCHInfo, Embase, and Web of Science. The search yielded 5403 manuscripts; 248 were selected for full-text review; 81 met the eligibility criteria for examining outcomes of a patient portal intervention. Results: The 81 articles described: trials involving comparison groups (n = 37; 45.7%), quality improvement initiatives (n = 15; 18.5%), pilot studies (n = 7; 8.6%), and single-arm studies (n = 22; 27.2%). Studies were conducted in primary care (n = 33, 40.7%), specialty outpatient (n = 24, 29.6%), or inpatient settings (n = 4, 4.9%)-or they were deployed system wide (n = 9, 11.1%). Interventions targeted specific health conditions (n = 35, 43.2%), promoted preventive services (n = 19, 23.5%), or addressed communication (n = 19, 23.4%); few specifically sought to improve the patient experience (n = 3, 3.7%). About half of the studies (n = 40, 49.4%) relied on human involvement, and about half involved personalized (vs exclusively standardized) elements (n = 42, 51.8%). Interventions commonly collected patient-reported information (n = 36, 44.4%), provided education (n = 35, 43.2%), or deployed preventive service reminders (n = 14, 17.3%). Discussion: This scoping review finds that most patient portal interventions have delivered education or facilitated collection of patient-reported information. Few interventions have involved pragmatic designs or been deployed system wide. Conclusion: The patient portal is an important tool in real-world efforts to more effectively support patients, but interventions to date rely largely on evidence from consented participants rather than pragmatically implemented systems-level initiatives.