Characteristics of Patients and Proxy Caregivers Using Patient Portals in the Setting of Serious Illness and End of Life.

Background: There are few studies examining the usage and utility of patient portals among seriously ill and end-of-life populations and their caregivers. Objective: The aim of this study was to describe portal user characteristics among patients and their caregivers (proxy login) at two time points: (1) the 12 months following an electronic medical record flag for serious illness and (2) during the last 12 months of life. Methods: A retrospective cohort analysis of Kaiser Permanente Colorado (KPCO) patients with serious illness, as defined by Kaiser Permanente's prognostic algorithm, and their proxy caregivers was performed for the two time periods. Use was characterized as (1) the discrete number of days the portal was used and (2) the number of days that portal features were accessed. Differences in use by user characteristics were assessed. Results: Patients flagged for serious illness (N = 6129) were 70.4 ± 14.2 years of age, and used the portal on average 50.4 days. Patients (N = 6517) in the last year of life were 76.7 ± 13.7 years of age and used the portal on average 43 days. Caregiver proxy use of the portal was low in both cohorts. Patients who were older, female, non-White, and healthier were less likely to use the portal. Conclusions: In comparison with overall KPCO portal use and recent patient portal studies examining use patterns, patient portal use was high among patients flagged with serious illness and nearing the end of life. However, because use was associated with age, gender, and race, addressing barriers to portal adoption among underserved populations and caregiver proxies is key to better leveraging patient portal systems for palliative and end-of-life care.

"We're Taking Something So Human and Trying to Digitize": Provider Recommendations for mHealth in Palliative Care.

Background: Mobile health (mHealth) is a promising tool for improving health outcomes. However, the benefits of using mHealth in palliative care are under studied. Objective: As a first step to designing meaningful palliative care-specific mobile applications, this research explored provider perspectives regarding the utility of mHealth in palliative care. Design: A qualitative phenomenological study with semistructured interviews. Setting/Subjects: Providers from multiple disciplines working in palliative care settings at an academic medical center. Results: Thematic analysis resulted in five provider recommendations regarding the utility and design of palliative care-specific mHealth, including (i) thoughtfulness to language, context, and delivery when assessing palliative care needs; (ii) include tools for prognosis and advance care planning; (iii) tailor health and quality-of-life goals; (iv) emphasize supports for family and caregivers; and (v) consider technology abilities of older adults. Conclusions: Palliative care providers are enthusiastic about the use of mHealth to improve care coordination, facilitate communication, enhance symptom monitoring, and improve patient-family support. However, providers have reservations about mobile functionality and depersonalized assessment and care. Providers stress the utility of mHealth to facilitate palliative care rather than replace important multidisciplinary services.

Perspectives of LGBTQ Older Adults on Aging in Place: A Qualitative Investigation.

This qualitative study conducted by a community-research partnership used multiple types of data collection to examine variables relevant for LGBTQ older adults who wished to age in place in their urban Denver neighborhood. Focus groups, interviews, and a town hall meeting were used to identify barriers and supports to aging in place. Participants (N = 73) identified primarily as lesbian or gay, aged 50-69, and lived with a partner. Ageism, heterosexism, and cisgenderism emerged as cross-cutting themes that negatively impact access to health care, housing, social support, home assistance, and legal services. Resilience from weathering a lifetime of discrimination was identified as a strength to handle aging challenges. Recommendations for establishing an aging in place model included establishing welcoming communities and resource centers and increasing cultural competence of service providers. This study provides a unique contribution to understanding the psychosocial, medical, and legal barriers for successfully aging in place.