Purpose Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. Methods We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care. Results Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia. Conclusions Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.

Narratives about patients’ experiences with outpatient care are essential for quality improvement because they convey ample actionable information that both elaborates on existing domains within patient experience surveys and describes multiple additional domains that are important to patients. The content of narrative feedback from patients can potentially be translated to improved quality in multiple ways: clinicians can learn from their own patients, groups of clinicians can learn from the experience of their peers’ patients, and health system administrators can identify and respond to patterns in patients’ accounts that reflect systemic challenges to quality. Consistent investment by payers and providers is required to ensure that patient narratives are rigorously collected, analyzed fully, and effectively used for quality improvement. Context For the past 25 years, health care providers and health system administrators have sought to improve care by surveying patients about their experiences. More recently, policymakers have acted to promote this learning by deploying financial incentives tied to survey scores. This article explores the potential of systematically elicited narratives about experiences with outpatient care to enrich quality improvement. Methods Narratives were collected from 348 patients recruited from a nationally representative Internet panel. Drawing from the literature on health services innovation, we developed a two‐part coding schema that categorized narrative content in terms of (a) the aspects of care being described, and (b) the actionability of this information for clinicians, quality improvement staff, and health system administrators. Narratives were coded using this schema, with high levels of reliability among the coders. Findings The scope of outpatient narratives divides evenly among aspects of care currently measured by patient experience surveys (35% of content), aspects related to measured domains but not captured by existing survey questions (31%), and aspects of care that are omitted from surveys entirely (34%). Overall, the narrative data focused heavily on relational aspects of care (43%), elaborating on this aspect of experience well beyond what is captured with communication‐related questions on existing surveys. Three‐quarters of elicited narratives had some actionable content, and almost a third contained three or more separate actionable elements. Conclusions In a health policy environment that incentivizes attention to patient experience, rigorously elicited narratives hold substantial promise for improving quality in general and patients’ experiences with care in particular. They do so in two ways: by making concrete what went wrong or right in domains covered by existing surveys, and by expanding our view of what aspects of care matter to patients as articulated in their own words and thus how care can be made more patient‐centered. Most narratives convey experiences that are potentially actionable by those committed to improving health care quality in outpat...

Background Nonmedical use of prescription opioids (defined as taking opioid medications for hedonic effects or in a manner other than prescribed) and the use of heroin have emerged in recent years as major public health concerns in the United States. Of particular concern is the prevalence of opioid use among emerging adults (ages 18–25), as this is a developmental period of heightened vulnerability and critical social, neurological, and psychological development. Data from 2015 show that American Indian/Alaska Native (AI/AN) people have the highest rates of diagnosis for opioid use disorders (OUDs). One recent study found that the overdose death rate among urban-dwelling AI/AN individuals was 1.4 times higher compared to those living in rural areas. To date, there are no evidence-based prevention programs addressing opioid use among urban AI/AN emerging adults that integrate culturally-appropriate strategies with evidence-based treatment. Traditions and Connections for Urban Native Americans (TACUNA) builds on our prior work with AI/AN communities across California to develop and evaluate culturally appropriate programming to address opioid, alcohol, and cannabis use among urban AI/AN emerging adults. Methods/design In a randomized controlled trial, 18–25 year old urban AI/AN emerging adults will receive either TACUNA (n = 185), which comprises three virtual workshops utilizing motivational interviewing, social network visualization, and integrating traditional practices and a wellness circle, or one virtual culturally sensitive opioid education workshop (n = 185). We will evaluate intervention effects on primary outcomes of frequency of opioid, alcohol, and cannabis use, as well as secondary outcomes of social network characteristics and cultural connectedness, over a 12-month period. Discussion This project has the potential to expand the range and effectiveness of opioid, alcohol, and cannabis services for urban AI/AN emerging adults by addressing the opioid epidemic and use of other substances at both the community and individual level. In addition, it provides important culturally grounded conceptual and practical information to advance the field of substance use interventions and enhance resiliency among this population. Trial registration: ClinicalTrials.gov Identifier: NCT04617938. Registered October 26, 2020 https://clinicaltrials.gov/ct2/show/record/NCT04617938.

No abstract