Purpose: Conceptual models provide frameworks to illustrate relationships among patient-, provider-, system-, and community-level factors that inform care delivery and research. Existing models of cancer survivorship care focus largely on pediatric or adult populations whose needs differ from adolescents and young adults (AYAs). We developed a patient-centered conceptual model of AYA survivorship care. Methods: We conducted a narrative literature review of current conceptual and theoretical models of care. We engaged AYA cancer survivors (n = 25) in semi-structured one-hour telephone interviews. Most participants were in their 20s and 30s, and the majority (84%) were women. Recruitment was stratified by age and time since cancer diagnosis. We conducted a thematic analysis of interview transcripts to identify themes that exemplified patient-centered care. Results: Most participants identified as white and female. Leukemia and breast cancer were the most common cancer types. Main themes included the need for (1) care coordination, (2) ongoing mental health support, (3) connection to AYA peer support, (4) support during fertility preservation efforts, (5) support with financial burden, (6) support for quality of life, (7) information about and support with side effects and late effects, and (8) attention to the unique needs of young adults. Conclusions: We present a patient-centered conceptual model of AYA survivorship care needs that can inform future cancer care delivery and research.

Background: Dementia caregiving presents unique challenges, particularly as family members, who provide the majority of unpaid care and support, navigate complex and unwieldy healthcare systems to secure care. Secure messaging portals are now the primary way patients and their caregivers communicate with healthcare providers outside of structured appointments. ¹ Messages sent through these portals can offer insight into relational and logistical realities of caregiving. Method: We identified a cohort of adults aged ≥ 65 years diagnosed with dementia from the Adult Changes in Thought (ACT) Study, a prospective cohort study of older adults in Seattle, WA. We compiled a corpus of secure messages sent from participants’ patient portals in the period spanning 5 years before until 5 years after dementia onset. We used Natural Language Processing (NLP) to select messages focused on patients’ lived experiences. We qualitatively analyzed 1023 secure messages between patients or caregivers and healthcare providers to identify themes. Results: We found several key themes (Table) in the secure messages that relate to caregiving and lived experience. These themes included: 1) healthcare system navigation, 2) medication concerns or requests, and 3) transitions in care. Only about 15% of messages sent from the patient portal were authored by patients themselves; the rest were authored by individuals in a variety of relationships to the patient; most were family caregivers, primarily daughters (Figure). Traces of the longitudinal, lived experience of patients with dementia and their caregivers come across quite clearly as messages included detailed descriptions of daily life and expressions of emotions such as gratitude, grief, and frustration. Conclusion: Secure messages initiated through the patient portal provide a valuable window onto the complex social and institutional dynamics of dementia care. These messages, authored by caregivers and/or patients in real‐time and in their own words, reveal difficulties experienced and strategies used to manage both the challenges of both progressive dementia and of dementia care within a complex and fragmented healthcare system. Reference 1. Han, H. R., Gleason, K. T., Sun, C. A., Miller, H. N., Kang, S. J., Chow, S., … Bauer, T. (2019). Using patient portals to improve patient outcomes: systematic review. JMIR human factors, 6(4), e15038.

Background: Medical records present a rich potential source of information on the lived experiences of people with dementia. These records are extensive and the work of extracting relevant data is labor‐intensive. We sought to determine whether we could use natural language processing (NLP) approaches to sift through medical records to prioritize an enriched subset of notes illuminating the lived experiences of people with dementia.Methods: We identified an analytic cohort of adults aged ≥ 65 years from the Adult Changes in Thought (ACT) Study, a prospective cohort study of dementia in Seattle, WA. We collected a corpus of 254,532 notes from the electronic medical records (2003‐present) of these participants. The corpus included a range of clinical encounters from five years prior to dementia onset to most recent visit. We implemented an NLP algorithm, pytakes, which extracted concepts from notes in our corpus. The concepts were codes adapted from a prior qualitative study, which we further refined for this study. We used these concepts to curate smaller sub‐corpora for manual, qualitative review.Results: Starting with 32 unique concepts, pytakes extracted over 1.7 million concepts. 178,042 notes (69.94% of the original corpus) had at least one associated concept. Preliminary review of notes extracted showed acceptable concurrence between the text retrieved and the target concepts. Leveraging the extracted concepts, we curated, then randomly sampled 500 notes for three sub‐corpora, each aimed at a different research question. The first investigates the topics and timings of patient‐ or caregiver‐initiated communications with the healthcare system. The second relates to caregiving needs and networks of people with dementia and how these shift over time. The third revolves around housing situations and transitions of people with dementia. Our qualitative team is examining these sub‐corpora to investigate the lived experience of people with dementia.Conclusions: NLP tools may be a productive method for identifying materials suited to qualitative inquiry into the lives of people with dementia. This innovative approach can provide access to data that would otherwise be difficult to obtain, offering insight into the lived experiences, care needs, living situations, and social networks of people living with dementia.