Esophageal Remodeling Correlates With Eating Behaviors in Pediatric Eosinophilic Esophagitis.

INTRODUCTION: There are limited data characterizing eating habits among pediatric patients with eosinophilic esophagitis (EoE). We compared eating behaviors in pediatric patients with EoE with healthy controls and assessed the degree of correlation with symptomatology, endoscopic and histologic findings, and esophageal distensibility. METHODS: We conducted a prospective, observational study where subjects consumed 4 food textures (puree, soft solid, chewable, and hard solid) and were scored for eating behaviors including number of chews per bite, sips of fluid per food, and consumption time. Symptomatic, endoscopic, histologic, and esophageal distensibility data were collected for case subjects. RESULTS: Twenty-seven case subjects and 25 healthy controls were enrolled in our study (mean age 11.0 years, 63.5% male). Compared with healthy controls, pediatric patients with EoE demonstrated more chews per bite with soft solid (13.6 vs 9.1, P = 0.031), chewable (14.7 vs 10.7, P = 0.047), and hard solid foods (19.0 vs 12.8, P = 0.037). Patients with EoE also demonstrated increased consumption time with soft solid (94.7 vs 58.3 seconds, P = 0.002), chewable (90.0 vs 65.1 seconds, P = 0.005), and hard solid foods (114.1 vs 76.4 seconds, P = 0.034) when compared with healthy controls. Subgroup analysis based on disease status showed no statistically significant differences in eating behaviors between active and inactive EoE. Total endoscopic reference score positively correlated with consumption time ( r = 0.53, P = 0.008) and number of chews ( r = 0.45, P = 0.027) for chewable foods and with number of chews ( r = 0.44, P = 0.043) for hard solid foods. Increased consumption time correlated with increased eosinophil count ( r = 0.42, P = 0.050) and decreased esophageal distensibility ( r = -0.82, P < 0.0001). DISCUSSION: Altered eating behaviors including increased chewing and increased consumption time can be seen in pediatric patients with EoE, can persist despite histologic remission, and may be driven by changes in esophageal distensibility.

Evaluation of the LIGHT Curriculum: An African American Church-Based Curriculum for Training Lay Health Workers to Support Advance Care Planning, End-of-Life Decision Making, and Care.

Background: Lay health workers (LHWs) engaging African Americans in conversations about advance care planning (ACP) often have felt unprepared for the challenges of communicating with patients as they approach the end of life. We developed a church-based training curriculum, LIGHT (Listening, Identifying, Guiding, Helping, Translating), in response to this need. Objectives: To evaluate the LIGHT Curriculum by assessing its impact on knowledge, beliefs and attitudes, and self-efficacy of the learners; describing their assessment of the classroom component of the training; and describing their visit activities, and perceptions derived during client visits. Design: prospective, descriptive, pre- and post-training evaluation. Settings/Subjects: Thirty-seven LHWs (Comfort Care Supporters [CCSs]) from three African American Churches (United States). Measurements: knowledge, beliefs and attitudes, assessment of classroom training, self-efficacy, visit activities, and perceptions. Results: Pre-to-post knowledge scores (range 0-26) increased by a mean of 5.23, p < 0.0001. Agreement with favorable beliefs about palliative and hospice care (HC) did not change significantly post-training. Disagreement with unfavorable beliefs about hospice increased, most notably, the belief that hospice means a place where people go to die (43% to 87%, p = 0.003) and HC means giving up (77% to 93%, p = 0.03). Post-training, 94% of the CCSs felt prepared to function in their roles. The CCSs who visited clients demonstrated the ability to engage clients and families in conversations about issues important to ACP, end-of-life decision making and care, and the ability to identify relevant benefits and challenges of their roles. Conclusions: LHWs, trained using the LIGHT Curriculum, can acquire the knowledge and self-efficacy necessary to support African American clients with ACP, end-of-life decision making, and end-of-life care.

Faith Beliefs of African American Church Leaders Are Aligned With the Principles of Palliative and Hospice Care: A Community-Based Assessment and Intervention.

BACKGROUND: African American (AA) church leaders often advise AAs with serious and life-limiting illnesses (LLIs). OBJECTIVES: 1) determine beliefs of AA church leaders about palliative care and hospice care (PCHC), 2) assess association of participants' attitude about encouraging a loved one to learn about PCHC with whether PC or HC is consistent with faith beliefs and can reduce suffering and bring comfort, and 3) evaluate an interactive, educational intervention. DESIGN: prospective, one group, pre and post assessment of beliefs and attitudes Settings/Subjects: 100 church leaders from 3 AA Churches and one AA Church Consortium. RESULTS: At baseline, participants held more receptive beliefs about HC than about PC. Those who reported knowing the meaning of PC believed PC is consistent with their faith (81% vs 28%, phi=.53) and can reduce suffering and bring comfort (86% vs 38%, phi =.50). Participants who believed PC was consistent with their faith were more likely to encourage a loved one with a LLI to learn about PCHC than did participants who did not (100% vs 77%, phi =.39, p < 0.001). Post intervention, more participants: 1) perceived that they knew the meaning of PC (48% vs 96%), 2) viewed PC as consistent with their faith (58% vs. 94%), and 3) viewed PC as a means to reduce suffering and bring comfort (67% vs 93%) with a p < 0.0001 for each item. The post intervention results for HC were variable. CONCLUSIONS: Faith beliefs of AA Church leaders may be aligned with the principles of PCHC.

LIGHT: A Church-Based Curriculum for Training African American Lay Health Workers to Support Advance Care Planning and End-of-Life Decision-Making.

Purpose: African Americans with life-limiting illnesses experience significant health inequities. Lay health workers (LHWs) may help overcome existing challenges of communicating with African Americans about advance care planning (ACP) and end-of-life decision-making. Church-based LHWs have some advantages over other LHWs but no curriculum exists to fully prepare them. This article describes the development, content, format, and implementation of a curriculum designed to meet this need. Methods: We created a church-based curriculum to train African American, LHWs as communications-facilitators who can support persons with life-limiting illnesses, not only with ACP but also with issues that arise as illnesses progress. Learners are church members whom we call comfort care supporters. The curriculum organizes the LHW interactions with clients by the mnemonic LIGHT: Listening, Identifying, Guiding, Helping, and Translating. Results: The final curriculum consists of three parts: (1) a 26-h classroom component delivered in nine modules organized around eight themes: meaning and prognosis of a life-limiting illness, spirituality and the meaning of death, understanding the dying process, major decisions and choices, goals of care, end-of-life services, and resources, intrafamily communication, and role and activities of the LHW; (2) a visit component; and (3) experiential, case-based discussions during monthly meetings. Conclusions: LHWs may improve quality of care and thus reduce health inequities at the end-of-life. Preparing LHWs for conversations about ACP is necessary but insufficient. This curriculum also prepares LHWs to attend to the spiritual needs of clients and to support clients with their other needs as their illness progresses.

Engaging the African American Church to Improve Communication About Palliative Care and Hospice: Lessons From a Multilevel Approach.

BACKGROUND: As the spiritual family for many African Americans, the church presents an opportunity to improve communication about palliative care and hospice (PCH). However, sustainable change in church-based, practices related to PCH requires a compreshensive, multilevel approach. OBJECTIVES: Our primary goal was to encourage churches to embrace palliative care and hospice as acceptable alternatives for end-of-life care by creating venues to improve communications about PCH. This paper compares our experience in 5 churches, revealing lessons learned and the challenges of engaging, implementing, and maintaining a multilevel approach in the churches, and our strategies in response to those challenges. DESIGN: Descriptive study Settings/Subjects: We partnered with 5 African American Churches in the Philadelphia Region. We targeted pastors, other church leaders, and congregants. METHODS: We created 1) a leadership-education program, 2) an intensive training program for church-based lay companions (health visitors), and 3) messages and materials to increase knowledge and influence attitudes about PCH. RESULTS: We impacted church structures and policies as shown by: integration of the project activities into existing church structures, new church-based programs dedicated to training lay companions and church leaders, new roles for church members (church liaisons) dedicated to this project, and new materials and messages focusing on PCH for the general congregation. CONCLUSIONS: We demonstrated the feasibility of engaging the African American church in a comprehensive, multilevel process designed to improve communication about palliative care and hospice (PCH). Our success demonstrates the potential of the African American church as a community resource for lay education about PCH.