The purpose of this study is to provide insight for improvement in care for young adults diagnosed with cancer (YADC), by identifying underemphasized outcomes that strongly matter to YADC and the gaps in care that may limit achieving these outcomes for this unique and vulnerable population. Methods: Twenty-seven YADC, ages 25-39, participated in unstructured discussions focusing on topics relating to diagnosis, daily experiences living with cancer outside of the clinical setting, goals, concerns, and clinical care experience. Most participants engaged in group discussions using Experience Group methodology. Discussions were designed to collect information on three dimensions of health: capability, comfort, and calm (CCC). Data were coded using thematic analysis with NVivo software. Results: Several themes were identified within the CCC framework: capability in terms of confronting mortality at a young age, losing youthful identity and control over major life course decisions, especially fertility, and debilitating side effects, comfort in terms of the lack of understanding from peers and family and the fear of cancer recurrence, and calm was discussed as the difficulty of making complex medical decisions, financial toxicity, and loss of clinical support in survivorship. Conclusion: This research highlighted four care additions that are important for YADC: (1) concise and understandable education about their condition and treatment; (2) same-age support groups; (3) fertility support; and (4) better care transitions for life after cancer. These findings emphasize the importance of creating a collaborative, multidisciplinary care team and a holistic approach with care innovations that support clinicians to meet the unique needs of YADC.

This qualitative study sought to answer three questions: What is it like to live with rotator cuff tendinopathy? What are the barriers and facilitators of a healthy lifestyle with an aging shoulder? And, what are the outcomes that matter most to people seeking care for rotator cuff tendinopathy? Patients diagnosed with rotator cuff tendinopathy participated in group discussions using semi-structured guides that focus on diagnosis, daily experiences living with rotator cuff tendinopathy, goals, concerns, and clinical care experiences. A hybrid of initial inductive coding of themes and subsequent deductive consideration of these themes within the capability, comfort, and calm framework was utilized. Themes associated with rotator cuff tendinopathy were less restful sleep, difficulty with work and life transitions, loss of baseline abilities, and limitation in social roles in the capability realm; physical pain, despair, and loneliness in the comfort realm; and lack of direction or progress and feeling uncared for in the calm realm. Barriers identified included: the sense that rotator cuff tendinopathy is something correctable rather than age-associated and the sense that painful activities will make the tendinopathy worse (common misconceptions); tenuous relationships and limited trust with clinicians; loss of hope; and a sense that care is directionless. What matters most to a person seeking specialty care for shoulder pain are feeling that they are getting effective care and not being dismissed; maintaining meaningful activity and life roles; and replacing despair and frustration with hope and progress. Anticipating these needs may facilitate the design of more effective care models. Level of Evidence: N/A.

This presentation will highlight our research which uses a qualitative methodology to incorporate the voices and experiences of people impacted by dementia into the value-based health model. This model is characterized by a team-based approach as well as the measurement of outcomes. The aim of value-based care is to provide individuals meaningful and compassionate care that helps them achieve the health outcomes that matter most to them. Foundational to creating this person-centered model is the incorporation of the perspectives of individuals with dementia and their care partners. Experience Groups offer an opportunity for those affected by dementia to share their expertise and describe their daily challenges and successes so we are able to learn from their experiences and better understand unmet and unarticulated needs. The findings of this research—consisting of 41 patients and 11 care partners—enabled the development of outcome measurement tools implemented at the clinical level, and the design of a care delivery model that addresses unmet needs. Some of the key findings from the research that have been implemented at the Cognitive Disorders Clinic and that will be highlighted in this poster are: 1. Care partners would like more emotional support from their medical team; 2. Individuals want more information about the trajectory of the disease and an actionable “roadmap-of-care”; 3. Care partners and those with early stage memory loss desire counseling and team-based care versus strictly physician-provided care.

The experiences of care of people with lived experience of homelessness are rarely embraced to change care delivery. We conducted qualitative group and one-on-one interviews utilizing experience group methodology with 27 people with lived experience of homelessness currently housed in one permanent housing community in central Texas. We analyzed data using an inductive thematic approach to identify shared obstacles and barriers to receiving health care. We then analyzed findings with the capability, comfort, and calm value framework to identify health outcomes that matter most to study participants. Poor access to care, discontinuities in care, distrust in providers, and confusing terminology were identified as the biggest barriers to health. The overwhelming majority of experiences reflected poor health outcomes of calm, the outcome of a health care experience that adds ease to one’s life rather than logistical and administrative chaos. We propose three practical approaches to achieve calm for this population as follows: systems-level embracement of compassionate care, integration of relationship-based care navigation into all levels of care, and building efficient transportation into care design. We conclude that designing health care that works in the lives of people with lived experience of homelessness is critical to address the gaps in care that fuel the health disparity these individuals face compared to people without this lived experience.

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