Best Practices to Reduce COVID-19 in Group Homes for Individuals with Serious Mental Illness and Intellectual and Developmental Disabilities, Massachusetts, 2021-2022 (ICPSR 39404)
The overall goal for this project was to reduce the incidence of COVID-19, hospitalization, and mortality among adults with serious mental illness (SMI) and intellectual disabilities/developmental disabilities (IDD) in congregate living settings (i.e., group homes) in Massachusetts, as well as to reduce COVID-19 incidence among staff who work in these settings. The research team was guided by two comparative effectiveness questions:
- With the goal of prioritizing and making actionable best practices available as resources, what is the comparative effectiveness of various types and intensities of preventative interventions (e.g., screening, isolation, contact tracing, hand hygiene, physical distancing, use of face masks) in reducing rates of COVID-19, related hospitalizations, and related mortality in this population?
- With the goal of effectively implementing best practices, what is the most effective implementation strategy to reduce rates of COVID-19 in this population: using tailored best practices (TBP) with SMI/IDD residents and staff of group homes in mind, or general best practices (GBP) from state and federal standard guidelines for all congregate care settings?
The specific aims of this study were as follows:
Aim 1a. Synthesize existing baseline data collected by 6 state behavioral health agencies on COVID-19 rates, hospitalization, mortality, and use of infection prevention practices.
Aim 1b. Collect stakeholder input via surveys and virtual focus groups on staff and resident experiences and on barriers/facilitators to implementing recommended preventative practices.
Aims 2a and 2b. Determine the comparative effectiveness of various COVID-19 preventative practices by (Aim 2a) using a validated simulation model to estimate COVID-19 spread in group homes and (Aim 2b) obtaining stakeholder input on prioritizing and defining tailored best practices for implementation.
Aim 3. Compare the effectiveness of TBPs with GBPs by using a hybrid effectiveness-implementation cluster randomized controlled trial.
Data collected to answer Aims 1 and 2 served as the foundation for designing the Aim 3 trial. Data for the trial were collected in 3-month intervals beginning January 2021 (baseline) until October 2022 (15-month follow-up). Residents and staff were sampled from approximately 400 group homes. Primary implementation outcome measures were COVID-19 vaccination rates and fidelity scores. The primary effectiveness outcome measure was COVID-19 infection.
Notes: This collection contains only data from Aim 1a and Aim 3. Throughout the data and documentation, "intellectual and/or developmental disabilities" is abbreviated as both IDD and ID/DD.
PRO-TECT: Electronic Patient Reporting of Symptoms During Outpatient Cancer Treatment, United States, 2017-2022 (ICPSR 39449)
Patients treated for metastatic cancer, or cancer that has spread to another part of the body, often have symptoms from cancer and its treatment. They may feel tired, depressed, or nauseated. They may find it hard to do their usual activities. Better symptom tracking may help improve patients' care. For example, symptom tracking could quickly alert doctors when a patient may need a different medicine. In this study, the research team compared use of a weekly electronic symptom tracking system versus usual care for patients with cancer. Patients receiving usual care could report their symptoms to their care team during regular clinic visits. The research team wanted to see if the tracking system helped patients live longer, have better quality of life, or go to the hospital or emergency room less often. The aims of this study were as follows:
- Determine whether integrating electronic patient-reported outcomes (ePRO) in cancer care improves patient-centered outcomes;
- Elicit perspectives about benefit burden tradeoffs for integrating patient-reported outcomes into clinical workflow; and
- Identify barriers, facilitators, and strategies used by practices to integrate patient-reported outcomes into clinical workflow.
A total of 1,191 patients were enrolled from 52 U.S.-based community oncology practices. Randomization into intervention and control conditions occurred at the site level. Data collected as part of this study included patient clinical information; weekly symptom surveys, quality of life surveys, and cancer care surveys completed by patients; feedback on the ePRO intervention from patients, clinical research associates, nurses, and physicians; and symptom alerts sent to nursing staff. Please note that while qualitative data were collected as part of this study, they are not available.