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Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned.

ABSTRACT: Background:Electronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation. Methods:This second pilot study involved families enrolled in a large EI program (n=1040 families) in concert with their implementation of a statewide quality improvement initiative for care plan development and outcomes reporting. A total of 22 EI service coordinators and supervisors were engaged in three phases: initial e-PRO intervention, peer mentor enhancement, and standard recruitment protocol. Results:Implementation of the e-PRO intervention and peer mentoring enhancement yielded low enrollment rates over the first six months (n=17). A standard recruitment protocol has resulted in enrollment growth (n=83) towards the targeted enrollment rate (n=832). Conclusions:This study reports on early insights for building and sustaining a productive academic-community partnership for e-PRO implementation to support family-centered coordinated care. Lessons learned from this academic-community partnership with respect to strategies for enhancing community significance, collaboration, return, and control are discussed as they inform further development of this intervention prior to scale-up.

SUBMITTER: Rigau BL

PROVIDER: S-EPMC6188646 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned.

Rigau Briana L BL Scully Elizabeth A EA Dooling-Litfin Jodi K JK Murphy Natalie J NJ McManus Beth M BM Khetani Mary A MA

Journal of clinical and translational science 20180201 1

<h4>Background</h4>Electronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation.<h4>Methods</h4>This second pilot study involved families enrolled in a large EI program (n=1040 families) in co ...[more]

PMID: 30333929

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Project description:BackgroundPatients and healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research. However, limited research characterizes this process or its impact.ObjectiveWe aimed to characterize patient and stakeholder engagement in the 50 Pilot Projects funded by the Patient-Centered Outcomes Research Institute (PCORI), and identify early contributions and lessons learned.DesignA self-report instrument was completed by researchers between 6 and 12 months following project initiation.ParticipantsForty-seven principal investigators or their designees (94 % response rate) participated in the study. MAIN MEASURES Self-report of types of stakeholders engaged, stages and levels of engagement, facilitators and barriers to engagement, lessons learned, and contributions from engagement were measured.Key resultsMost (83 %) reported engaging more than one stakeholder in their project. Among those, the most commonly reported groups were patients (90 %), clinicians (87 %), health system representatives (44 %), caregivers (41 %), and advocacy organizations (41 %). Stakeholders were commonly involved in topic solicitation, question development, study design, and data collection. Many projects engaged stakeholders in data analysis, results interpretation, and dissemination. Commonly reported contributions included changes to project methods, outcomes or goals; improvement of measurement tools; and interpretation of qualitative data. Investigators often identified communication and shared leadership strategies as "critically important" facilitators (53 and 44 % respectively); lack of stakeholder time was the most commonly reported challenge (46 %). Most challenges were only partially resolved. Early lessons learned included the importance of continuous and genuine partnerships, strategic selection of stakeholders, and accommodation of stakeholders' practical needs.ConclusionsPCORI Pilot Projects investigators report engaging a variety of stakeholders across many stages of research, with specific changes to their research attributed to engagement. This study identifies early lessons and barriers that should be addressed to facilitate engagement. While this research suggests potential impact of stakeholder engagement, systematic characterization and evaluation of engagement at multiple stages of research is needed to build the evidence base.

Project description:BackgroundFamily-centered care is a valued approach to improving child and family outcomes in early intervention (EI), yet there is need to implement interventions that support information exchange for shared decision-making when planning and monitoring EI care. This study aims at estimating the feasibility, acceptability, and value of implementing the Young Children's Participation and Environment Measure (YC-PEM), a valid electronic patient-reported outcome (e-PRO) that is designed to support family engagement when planning care and monitoring outcomes of care.MethodsData were gathered from caregivers (N = 139) that were enrolled in a Phase 1 trial of the YC-PEM e-PRO as implemented within 1 month of their child's next EI evaluation of progress. YC-PEM e-PRO feasibility was estimated according to enrollment and completion rates, and mean completion time. Chi-square tests were used to examine parent perceptions of YC-PEM e-PRO acceptability by caregiver education and family income. Caregiver feedback via open-ended responses were content coded to inform intervention and protocol optimizations. YC-PEM e-PRO value was estimated via composite and item-level scores to capture the extent of participation difficulty in home and community activities, and common areas of need regarding caregivers desired change in their child's participation.ResultsFeasibility of implementing the YC-PEM e-PRO in routine EI care was mixed, as evidenced by low enrollment rates (21.0-29.2%), a high completion rate (85.3%), and limited missing data (80.6% of completed cases contained no missing data). More than half of the participants reported that the completion of the YC-PEM e-PRO was at least somewhat helpful, regardless of family income or caregiver education, providing support for its acceptability. As for its value, the YC-PEM e-PRO results were viewed by 64% of caregivers, whose desire for change most often pertained to the child's participation in non-discretionary activities at home and structured activities in the community.ConclusionsResults may support the implementation of YC-PEM e-PRO as a feasible, acceptable, and valued option for engaging families in planning the child's EI care. Results also inform select intervention and protocol optimizations prior to undertaking a multi-site pragmatic trial of its effectiveness on family engagement and shared decision-making within an EI clinical workflow.Trial registrationTrial number: NCT03904797 . Trial registered at Clinicaltrials.gov . Registered 22 March 2019. Retrospectively registered.

Project description:BackgroundPatients with chronic hepatitis C virus (HCV) experience reduced quality of life, HCV-associated symptoms, comorbid conditions, and treatment side effects. The Cognitive Behavioral Coping Skills group intervention for HCV (CBCS-HCV) was developed using the Stage Model of Behavioral Therapies Research. Intervention development and initial feasibility testing in wave 1 participants were previously reported. The primary objective of this subsequent pilot with wave 2-3 participants was to investigate the effect sizes and clinical improvements in patient-reported outcomes (PROs) and trial and intervention feasibility.MethodsA pilot feasibility two-arm randomized controlled trial using block randomization to assign patients to CBCS-HCV or standard of care was conducted. Participants attended nine group sessions: four before HCV treatment and five during treatment. PRO data were collected at five time points: before the CBCS intervention (T1), immediately before HCV treatment (T2), during HCV treatment (T3, T4), and 1 month post-intervention/post-HCV treatment (T5). PROs included quality of life, perceived stress, HCV symptoms, and medication adherence. Cohen's d was used to estimate within-group changes (WGCs) and between-group differences (BGDs), with d > 0.35 considered potentially clinically significant. Potential mechanisms of change were also evaluated.ResultsSeveral WGCs and BGDs (ES > .35) suggest that the CBCS-HCV may promote improvements in PROs: psychological stress, depression, anger, anxiety, sleep disturbance, and fatigue. The intervention did not appear to impact social functioning, pain, or medication adherence. Cognitive behavioral skills and group therapy dynamics, but not HCV treatment self-efficacy, may mediate improvements in PROs. Most aspects of the study trial, including intervention implementation, were feasible. Patient acceptance and retention were exceptional. The greatest feasibility challenge was due to patients needing to initiate treatment as soon as medications were obtained, but often before a full block could be created in wave 3. Challenges with PRO data collection were identified that will be resolved in future studies.ConclusionsThe CBCS-HCV intervention warrants future investigation in an efficacy trial to evaluate improvements in selected PROs. The next step is to pilot test the CBCS-HCV delivered via telehealth to an expanded pool of patients to reduce patient barriers, hone technical logistics, and improve intervention reach and effectiveness.Trial registrationNCT03057236 Retrospectively registered.

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Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned.

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Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned.

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