Background Home telemonitoring is a promising approach to optimizing outcomes for patients with Type 2 Diabetes; however, this care strategy has not been adapted for use with understudied and underserved Hispanic/Latinos (H/L) patients with Type 2 Diabetes. Methods A formative, Community-Based Participatory Research approach was used to adapt a home telemonitoring intervention to facilitate acceptability and feasibility for vulnerable H/L patients. Utilizing the ADAPT-ITT framework, key stakeholders were engaged over an 8-month iterative process using a combination of strategies, including focus groups and structured interviews. Nine Community Advisory Board, Patient Advisory, and Provider Panel Committee focus group discussions were conducted, in English and Spanish, to garner stakeholder input before intervention implementation. Focus groups and structured interviews were also conducted with 12 patients enrolled in a 1-month pilot study, to obtain feedback from patients in the home to further adapt the intervention. Focus groups and structured interviews were approximately 2 hours and 30 min, respectively. All focus groups and structured interviews were audio-recorded and professionally transcribed. Structural coding was used to mark responses to topical questions in the moderator and interview guides. Results Two major themes emerged from qualitative analyses of Community Advisory Board/subcommittee focus group data. The first major theme involved intervention components to maximize acceptance/usability. Subthemes included tablet screens (e.g., privacy/identity concerns; enlarging font sizes; lighter tablet to facilitate portability); cultural incongruence (e.g., language translation/literacy, foods, actors “who look like me”); nursing staff (e.g., ensuring accessibility; appointment flexibility); and, educational videos (e.g., the importance of information repetition). A second major theme involved suggested changes to the randomized control trial study structure to maximize participation, including a major restructuring of the consenting process and changes designed to optimize recruitment strategies. Themes from pilot participant focus group/structured interviews were similar to those of the Community Advisory Board such as the need to address and simplify a burdensome consenting process, the importance of assuring privacy, and an accessible, culturally congruent nurse. Conclusions These findings identify important adaptation recommendations from the stakeholder and potential user perspective that should be considered when implementing home telemonitoring for underserved patients with Type 2 Diabetes. Trial registration NCT03960424; ClinicalTrials.gov (US National Institutes of Health). Registered 23 May 2019. Registered prior to data collection. https://www.clinicaltrials.gov/ct2/show/NCT03960424?term=NCT03960424&draw=2&rank=1
Background Although home telemonitoring (TM) is a promising approach for patients managing their chronic disease, rehabilitation using home TM has not been tested for use with individuals living with chronic obstructive pulmonary disease (COPD) residing in underserved communities. Objective This study aimed to analyze qualitative data from focus groups with key stakeholders to ensure the acceptability and usability of the TM COPD intervention. Methods We utilized a community-based participatory research (CBPR) approach to adapt a home TM COPD intervention to facilitate acceptability and feasibility in low-income African American and Hispanic patients. The study engaged community stakeholders in the process of modifying the intervention in the context of 2 community advisory board meetings. Discussions were audio recorded and professionally transcribed and lasted approximately 2 hours each. Structural coding was used to mark responses to topical questions in interview guides. Results We describe herein the formative process of a CBPR study aimed at optimizing telehealth utilization among African American and Latino patients with COPD from underserved communities. A total of 5 major themes emerged from qualitative analyses of community discussions: equipment changes, recruitment process, study logistics, self-efficacy, and access. The identification of themes was instrumental in understanding the concerns of patients and other stakeholders in adapting the pulmonary rehabilitation (PR) home intervention for acceptability for patients with COPD from underserved communities. Conclusions These findings identify important adaptation recommendations from the stakeholder perspective that should be considered when implementing in-home PR via TM for underserved COPD patients. Trial Registration ClinicalTrials.gov NCT03007485; https://clinicaltrials.gov/ct2/show/NCT03007485
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Introduction Despite the known benefit to patients and families, discussions about goals, values and preferences for medical care in advancing serious illness often do not occur. Many system and clinician factors, such as patient and clinician reticence and shortage of specialty palliative care teams, contribute to this lack of communication. To address this gap, we designed an intervention to promote goals-of-care conversations and palliative care referrals in the hospital setting by using trained palliative care educators and video decision aids. This paper presents the rationale, design and methods for a trial aimed at addressing barriers to goals-of-care conversations for hospitalised adults aged 65 and older and those with Alzheimer’s disease and related Dementias, regardless of age. Methods and analysis The Video Image about Decisions to Improve Ethical Outcomes with Palliative Care Educators is a pragmatic stepped wedge, cluster randomised controlled trial, which aims to improve and extend goals-of-care conversations in the hospital setting with palliative care educators trained in serious illness communication and video decision aids. The primary outcome is the proportion of patients with goals-of-care documentation in the electronic health record. We estimate that over 9000 patients will be included. Ethics and dissemination The Institutional Review Board (IRB) at Boston Medical Center will serve as the single IRB of record for all regulatory and ethical aspects of this trial. BMC Protocol Number: H-41482. Findings will be presented at national meetings and in publications. This trial is registered at ClinicalTrials.gov. Trial registration number NCT04857060 ; ClinicalTrials.gov
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