RESUMO
BACKGROUND: Symptoms in patients with advanced cancer are often inadequately captured during encounters with the healthcare team. Emerging evidence demonstrates that weekly electronic home-based patient-reported symptom monitoring with automated alerts to clinicians reduces healthcare utilization, improves health-related quality of life, and lengthens survival. However, oncology practices have lagged in adopting remote symptom monitoring into routine practice, where specific patient populations may have unique barriers. One approach to overcoming barriers is utilizing resources from value-based payment models, such as patient navigators who are ideally positioned to assume a leadership role in remote symptom monitoring implementation. This implementation approach has not been tested in standard of care, and thus optimal implementation strategies are needed for large-scale roll-out. METHODS: This hybrid type 2 study design evaluates the implementation and effectiveness of remote symptom monitoring for all patients and for diverse populations in two Southern academic medical centers from 2021 to 2026. This study will utilize a pragmatic approach, evaluating real-world data collected during routine care for quantitative implementation and patient outcomes. The Consolidated Framework for Implementation Research (CFIR) will be used to conduct a qualitative evaluation at key time points to assess barriers and facilitators, implementation strategies, fidelity to implementation strategies, and perceived utility of these strategies. We will use a mixed-methods approach for data interpretation to finalize a formal implementation blueprint. DISCUSSION: This pragmatic evaluation of real-world implementation of remote symptom monitoring will generate a blueprint for future efforts to scale interventions across health systems with diverse patient populations within value-based healthcare models. TRIAL REGISTRATION: NCT04809740 ; date of registration 3/22/2021.
Assuntos
Neoplasias , Qualidade de Vida , Atenção à Saúde , Humanos , Neoplasias/terapia , Projetos de PesquisaRESUMO
BACKGROUND: Despite growing efforts to facilitate advance care planning (ACP) to decrease health disparities in palliative care, low completion rates of advance directives (AD) have been consistently found among African Americans. OBJECTIVE: The objective was to examine the feasibility of a multicomponent ACP intervention program that integrates motivational interviewing, evidence-based ACP facilitation program (Respecting Choices(®)), and health-literacy adjusted AD. This pilot study aims to address the unique barriers to ACP engagement among African Americans in the Deep South. METHODS: The design was a mixed-method randomized controlled trial design. Analysis of covariance (ANCOVA) and thematic content analysis (TCA) were conducted to identify barriers and facilitators for ACP engagement and to assess feasibility, knowledge, and intention to complete an AD. Thirty community-dwelling African Americans (mean age M = 55.43, SD = 6.71, range = 47-73) were recruited from the Deep South and randomly assigned to receive intervention (n = 15) or educational material (n = 15) at a local university medical center. RESULTS: All participants (n = 30) reported high satisfaction (M = 4.81, SD = 0.44, max score = 5) and increased intent to complete an AD at postintervention. A significant increase in knowledge on AD from baseline to postintervention was observed in the intervention group-t(14) = -3.06, p = 0.01, d = 1.67); no significant change was found for control. Lack of information, mistrust of doctors, and avoidance of discussing death were primary barriers to ACP discussions. Facilitators include ACP education, decreased mistrust, and proactive initiation of ongoing ACP discussions. CONCLUSIONS: Feasibility data revealed successful implementation of a brief intervention to increase ACP engagement and willingness to complete an AD among southern African Americans.
Assuntos
Planejamento Antecipado de Cuidados/estatística & dados numéricos , Negro ou Afro-Americano , Idoso , Estudos de Viabilidade , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Sudeste dos Estados UnidosRESUMO
OBJECTIVES: This exploratory study examined the context and consequences of custodial grandparenting, along with attitudes and preferences regarding future planning among 22 African-American custodial grandmothers. METHOD: A mixed-method research design was employed. Based on our integration of two theories regarding future planning and health behavior change, caregiving, emotional distress, religiosity and spirituality, and future planning were assessed using questionnaires along with semi-structured interviews. RESULTS: African-American custodial grandmothers (mean age M = 53.64, SD = 9.58) perceived their caregiving role as rewarding (72%) yet challenging (86%). More than 40% reported significant emotional distress (CES-D ≥ 16) that warrants clinical attention. Findings showed that while 64% of study participants had future plans regarding who will substitute in their caregiving role if they become incapacitated, only 9% had completed a living will. Three major themes emerged regarding custodial grandmothers' caregiving role which includes: (1) rewards; (2) challenges including feeling overwhelmed and health concerns; and (3) caregiving decisions including conflicts between 'My plan was /put self on-hold' for grandchildren and difficulty with future planning. These themes highlighted the dynamics of caregiving across time, including current context and the ongoing process of decision-making. CONCLUSION: Findings suggest that while African-American custodial grandmothers find caregiving rewarding, they face unique challenges in contemplating and developing future plans. Custodial grandmothers think about substitute caregivers for their grandchildren but need assistance communicating a plan focused on their own needs for future care. Culturally sensitive interventions designed to facilitate effective utilization of future plans within this caregiver population are needed.