Human-Centered Design of an Advance Care Planning Group Visit for Mild Cognitive Impairment

Background and Objectives While advance care planning (ACP) is critical for ensuring optimal end-of-life outcomes among individuals with mild cognitive impairment (MCI), many individuals that may benefit from ACP have not initiated this process. This paper aims to describe the iterative design of a MCI group visit-based intervention, and evaluate feasibility and acceptability of the intervention. Research Design and Methods We used human-centered design, rapid-cycle prototyping, and multiple methods to adapt an Engaging in Advance Care planning Talks (ENACT) Group Visits intervention. We convened an advisory panel of persons with MCI and care partners (n=6 dyads) to refine the intervention and conducted a single-arm pilot of four MCI ENACT intervention prototypes (n=13 dyads). We used surveys and interviews to assess outcomes from multiple perspectives. Results The advisory panel affirmed that ACP is a priority for individuals with MCI, described the need for ACP in a group setting, and suggested refinements to ACP resources for the MCI ENACT intervention. Feasibility of recruitment was limited. MCI ENACT intervention participants strongly agreed that group discussions provided useful information and recommended the intervention. Themes supporting acceptability included: 1) feedback on acceptability of the intervention; 2) previous experiences with ACP; and 3) reasons for participation, including desire for discussions about MCI and how it relates to ACP. Discussion and Implications Despite stakeholder’s positive ratings of acceptability of the MCI ENACT intervention, future work is needed to enhance feasibility of recruitment to support implementation into clinical settings.

Development and Implementation of an Advanced Practitioner–Led Survivorship Clinic for Patients Status Post Allogeneic Transplant

Background: Survivor recovery from hematopoietic cell transplantation (HCT) is long term, with significant physical and psychological morbidities that impact quality of life and reentry into personal and social lives. The optimal timing of when and how to deliver comprehensive HCT survivorship care is not well defined. Purpose: The purpose of this study was to design, implement, and evaluate an advanced practitioner (AP)-led pilot survivorship clinic incorporating an individual and group format for patients post HCT at the 1-year transition period. Methods: A survey assessing physical, social, emotional, and spiritual needs and concerns was mailed to a sample of patients who underwent HCT between 2009 and 2014. This phase 1 survey was utilized in the phase 2 design of an AP-led pilot survivorship clinic for patients post allogeneic HCT. A total of 15 patients were approached, out of which 7 enrolled over a 12-month period in the pilot survivorship clinic. Results: The needs assessment survey noted the most prevalent moderate to high concerns were in the emotional domain, with 52% of respondents identifying fear of cancer returning and new cancer developing. The pilot survivorship clinic incorporating a group visit format with multiple sessions was not feasible for both patients and APs within the context of a small- to medium-sized HCT program. Conclusion: The needs assessment survey underscored the importance of addressing all four quality of life domains in cancer survivors. A hybrid survivorship clinic with one comprehensive group visit may be beneficial for HCT survivors at the 1-year transition for small- to medium-sized HCT programs.

Overcoming the Digital Divide in the post-COVID “Reset”: Enhancing Group Virtual Visits with Community Health Workers (Preprint)

UNSTRUCTURED The COVID-19 pandemic created numerous barriers to implement participant-facing research. For most, the pandemic required quickly transitioning to all virtual platforms. Like clinical care in the pandemic, our most vulnerable populations are at highest risk of falling through the cracks of engagement in research. Yet, we argue that we should reframe the discussion to consider how this transition may create opportunities to engage hard to reach populations. In the following, we present our experience in Atlanta, GA, transitioning a group visit model for South Asian immigrants to a virtual platform and the pivotal role community members in the form of community health workers (CHWs) can play in building capacity among participants. We provide details on how this model helped address common barriers to group visit models in clinical practice and how our CHW team innovatively addressed the digital challenges of working with an elderly population with limited English proficiency.

Qualitative Needs Assessment for the Development of Chronic Pain Group Medical Visits

Group medical visits (GMVs) for patients with chronic pain are becoming more accessible and have been shown to be successful in furthering patient education on multidisciplinary, nonopioid interventions. Unfortunately, evidence suggests that many group visit models lack sustainability due to recruitment issues and retention rates. Additionally, most of the studies surrounding GMVs are located in primarily urban health centers, potentially limiting their generalizability. This study aims to identify patient interest in and barriers to GMVs for chronic pain and to explore how chronic pain impacts daily lives for GMV content optimization in a nonurban population. Nineteen participants age 18 to 65 years participated in semistructured phone interviews to generate a thematic analysis. Participants received their care from family practitioners at a suburban multiclinic academic medical group and were being prescribed at least 50 morphine milligram equivalents (MME) at the time of recruitment. Analysis generated two themes: (1) Participants expressed specific interest in GMVs with few barriers identified, and (2) Pain has a negative impact on mental health and most aspects daily life, creating a foundation for discussion in GMVs. Findings support significant patient interest in group medical visits for chronic pain, but careful planning is necessary to address patient needs, expectations, and barriers in order to ensure GMV sustainability.

An Advance Care Planning Group Visit Intervention for Individuals With Mild Cognitive Impairment

Among older adults without cognitive impairment, a novel advance care planning group visit (ACP-GV) intervention increased ACP documentation and readiness to engage in ACP. A key question is whether an intervention can be adapted to support people with mild cognitive impairment (MCI) and a family care partner. We used a human-centered design process, rapid-cycle prototyping, and qualitative methods to adapt an ACP-GV intervention to individuals with MCI and a study partner. In 2019, we convened a longitudinal cohort of six patient-study partner stakeholders in three focus groups to suggest intervention adaptations. We also conducted a single arm study of four ACP-GV interventions (n=13 dyads total) that were iteratively refined with input from the longitudinal focus groups and intervention participant feedback. Decision tools, resources and videos were used to describe the concept of ACP and flexibility in selecting a medical decision maker. Many ACP-GV participants strongly agreed that the group discussion gave them useful information (81%) and would recommend the ACP-GV to a friend (85%). Pre- and post-ACP readiness surveys indicated that participants were significantly more ready to talk to their medical decision maker about ACP (p=0.028), while study partners perceived their loved ones less ready to speak to their doctor about ACP following the intervention (p=0.031). Use of rapid prototyping allowed testing of different resources and tools aimed at helping individuals with MCI and their study partners discuss ACP. Future work is needed to understand the feasibility of implementing an ACP-GV intervention for individuals with MCI into clinical settings.