Building a Community-Academic Partnership to Improve Underrepresented Group Awareness of Parkinson’s Disease and Research

BACKGROUND: Members of underrepresented groups (URGs) are more likely to have delays in PD diagnosis and less likely to receive specialized care when compared to non-Hispanic Caucasians. URGs are not proportionately represented in PD clinical research. Barriers to optimal diagnosis and treatment and research participation are multifaceted but include insufficient community knowledge of PD and research. OBJECTIVES: To establish a community-academic partnership (CAP) for increasing knowledge of Parkinson’s Disease (PD) and research opportunities in underrepresented Chicago communities. Here, we describe the development, structure, and outcomes of this pilot program. METHODS: The Chicago Movement Coalition (CMC) was established with academic leaders from two Chicago institutions, community leaders, people with PD and care-partners from two URG-predominant communities. Two community focus groups identified community needs regarding PD and PD research, informing the development of an educational intervention. Educational workshops (EW) were developed and executed to increase knowledge of PD symptoms, treatment, available resources, and research opportunities. RESULTS: Qualitative analysis from two focus groups with 13 participants identified themes related to PD knowledge, perceptions of clinical research and the CMC, and EW ideas. Four community EWs were completed with 162 total participants. Of 97 completed pre- and post-workshops surveys, 98% were satisfied with the workshop and 94% felt more comfortable understanding PD signs, symptoms and treatments. CONCLUSIONS: The CMC is a novel CAP established to address inequities in PD. The coalition experience can be used to inform and structure future community-engaged education and research initiatives aiming to decrease PD clinical and research disparities

Protocol for a type 2 hybrid effectiveness-implementation study expanding, implementing and evaluating electronic health record-integrated patient-reported symptom monitoring in a multisite cancer centre

IntroductionCancer symptom monitoring and management interventions can address concerns that may otherwise go undertreated. However, such programmes and their evaluations remain largely limited to trials versus healthcare systemwide applications. We previously developed and piloted an electronic patient-reported symptom and need assessment (‘cPRO’ for cancer patient-reported outcomes) within the electronic health record (EHR). This study will expand cPRO implementation to medical oncology clinics across a large healthcare system. We will conduct a formal evaluation via a stepped wedge trial with a type 2 hybrid effectiveness-implementation design.Methods and analysisAim 1 comprises a mixed method evaluation of cPRO implementation. Adult outpatients will complete cPRO assessments (pain, fatigue, physical function, depression, anxiety and supportive care needs) before medical oncology visits. Results are available in the EHR; severe symptoms and endorsed needs trigger clinician notifications. We will track implementation strategies using the Longitudinal Implementation Strategy Tracking System. Aim 2 will evaluate cPRO’s impact on patient and system outcomes over 12 months via (a) a quality improvement study (n=4000 cases) and (b) a human subjects substudy (n=1000 patients). Aim 2a will evaluate EHR-documented healthcare usage and patient satisfaction. In aim 2b, participating patients will complete patient-reported healthcare utilisation and quality, symptoms and health-related quality of life measures at baseline, 6 and 12 months. We will analyse data using generalised linear mixed models and estimate individual trajectories of patient-reported symptom scores at baseline, 6 and 12 months. Using growth mixture modelling, we will characterise the overall trajectories of each symptom. Aim 3 will identify cPRO implementation facilitators and barriers via mixed methods research gathering feedback from stakeholders. Patients (n=50) will participate in focus groups or interviews. Clinicians and administrators (n=40) will complete surveys to evaluate implementation. We will graphically depict longitudinal implementation survey results and code qualitative data using directed content analysis.Ethics and disseminationThis study was approved by the Northwestern University Institutional Review Board (STU00207807). Findings will be disseminated via local and conference presentations and peer-reviewed journals.Trial registration numberNCT04014751; ClinicalTrials.gov

Development and initial testing of TOGETHER-YA: an eHealth-delivered and group-based psychosocial intervention for young adult cancer survivors

This study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2). TOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction). Focus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants "agreed" to "strongly agreed" with positive statements about the weekly sessions and the overall program. TOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL. NCT05048316, September 17, 2021; NCT05054569, September 23, 2021