Comparative Effectiveness of Single-Site and Scattered-Site Permanent Supportive Housing on Patient-Centered and COVID-19-Related Outcomes for People Experiencing Homelessness, California, 2021-2023 (ICPSR 39155)
People experiencing homelessness (PEH) were among the most likely to contract the novel coronavirus disease 2019 (COVID-19). Many PEH utilized high-density public places to satisfy their basic needs (e.g., soup kitchens for sustenance, public libraries for restrooms). This made it difficult for them to limit close contact with others and put them at increased risk of contracting and transmitting COVID-19. Furthermore, it was difficult to follow recommended protective measures--such as handwashing and social distancing--when living in shelters or on the streets.
PEH were at higher risk of COVID-19 related hospitalization and death than the rest of the population. The poor living conditions of PEH accelerated aging, leading them to experience geriatric conditions and medical complications more typical of individuals 10-20 years older. They were also at increased risk of cardiovascular and respiratory disease, HIV/AIDS, and diabetes, all conditions that increase vulnerability to serious COVID-19-related complications and death. These risks were compounded by the fact that PEH also faced significant barriers to accessing quality health care. In the absence of protective action, it was estimated that more than 21,000 PEH would require hospitalization due to COVID-19, more than 7,000 would require critical care, and nearly 3,500 would die.
Consequently, the COVID-19 pandemic made housing and health care for PEH one of the top priorities for the U.S. health care and public health systems. State and local governments across the country used federal relief funds to allocate private hotel rooms as protective shelter for vulnerable PEH. In Los Angeles County (LAC), which contains the largest unsheltered homeless population in the nation, 2,400 PEH were placed in hotels. COVID-19 response plans included accommodating up to 15,000 PEH in hotels who would then be moved to permanent housing in 90 days. This rapid push into housing amid a pandemic necessitated a delicate balance between social distancing and maintaining patients' basic needs, continuity of existing care, and personal and social well-being.
Permanent supportive housing (PSH)--programs that provide immediate access to independent living situations coupled with support services--is the most effective approach for serving PEH. Numerous studies have demonstrated PSH's effectiveness in improving housing retention, quality of life, and HIV outcomes. Though evidence concerning its impact on other health outcomes, health behaviors, and health care utilization is limited, the National Academies of Sciences, Engineering, and Medicine has nonetheless recognized PSH as extremely beneficial for PEH's health. COVID-19 was what this organization termed a "housing-sensitive condition"--one whose transmissibility, course, and medical management are particularly influenced by homelessness. Consequently, the National Alliance to End Homelessness recommended the use of PSH as part of its framework to address COVID-19 and homelessness.
However, significant questions remain about what types of PSH programs can best address COVID-19-related risk and promote patient-centered outcomes at a time of social and community disruption. There are two distinct approaches to implementing PSH: place-based (PB) PSH, or single-site housing placement in a congregate residence with on-site services, and scattered-site (SS) PSH, which uses apartments rented from a private landlord to house clients while providing mobile case management services. The strengths and weaknesses of these two approaches remain largely unknown but may have direct implications for adherence to COVID-19 prevention protocols and other health-related outcomes.
Comparative Effectiveness PTSD Trial of Sequenced Pharmacotherapy and Psychotherapy in Primary Care, 11 U.S. States, 2021-2024 (ICPSR 39425)
Based on the state of the scientific evidence, the Sequenced Treatment Effectiveness for Posttraumatic Stress (STEPS) Trial was designed to address three specific aims. The first aim was to quantitatively compare engagement, self-reported PTSD symptom severity (primary outcome), quality of life, and recovery outcomes of primary care patients randomized to initially receive brief psychotherapy (Written Exposure Therapy - WET) or their choice of the three selective serotonin reuptake inhibitors (SSRIs). The second aim was, among patients not responding to initial treatment, to quantitatively compare outcomes of primary care patients randomized to: 1) augment the SSRI with WET, 2) switch from the SSRI to another class of antidepressants (serotonin-norepinephrine reuptake inhibitors - SNRI), or 3) switch from WET to the choice of the three SSRIs. The third specific aim was to quantitatively examine treatment heterogeneity among subgroups of primary care patients receiving pharmacotherapy and psychotherapy, including veterans, women, and those using cannabis.
Computer-Administered Animation as a New Method for Measuring Young Children's Health Outcomes [Methods Study], Orange County, California, 2013-2018 (ICPSR 39517)
Patients often take surveys about their health or quality of life. Results from these surveys can help doctors meet patients' needs. Young children can't fill out surveys by themselves. They may not be able to read or understand the questions. Most often, parents or hospital staff read the questions aloud, or parents answer the questions for their children. But this method may not give accurate results.
In this study, the research team tested three surveys for children ages 4 to 12 who are going to have or who recently had surgery. The first survey asks about general health. The second survey asks about feeling worried before surgery. The third survey asks about pain after surgery. A computer program reads the survey questions aloud. The surveys are animated and choices for the answers appear as cartoons.
The team wanted to learn if the surveys were
- Accurate, or correctly capturing how the children were feeling
- Reliable, or if children answered in a consistent way when asked similar questions
Development and Evaluation of a Patient-Centered Approach to Assess Quality of Care: Patient-Reported Outcomes-Based Performance Measures (PRO-PMs) [Methods Study], 6 U.S. States, 2016-2020 (ICPSR 39628)
Patient-reported outcome measures, or PROMs, ask patients how they feel and what activities they can do in daily life. Patients receiving cancer treatment, such as chemotherapy, often have side effects. PROMs can help cancer centers know if patients are getting high-quality care that helps manage their side effects.
In this study, the research team wanted to
- Learn from patients and clinicians, like doctors and nurses, what side effects are important to track during chemotherapy
- Create PROMs that can measure important side effects of chemotherapy
The research team also wanted to test the PROMs to see
- If patients find them easy to complete
- If the PROMs can detect differences in how well cancer centers control patients' treatment side effects
Development of a Patient-Directed Queries Network to Engage Patients and Prioritize Their Questions to Inform the Patient-Centered Outcomes Research Institute (PCORI) Research Agenda [Methods Study], United States, 2014-2020 (ICPSR 39616)
Research teams usually decide on research agendas, or issues and questions to study in research projects, even when community stakeholder organizations, or CSOs, such as healthcare networks and patient organizations, are involved.
In this project, the research team explored a process for helping CSOs create research questions and set research agendas.
Emergency Medicine Palliative Care Access (EMPallA), United States, 2018-2022 (ICPSR 39115)
According to the World Health Organization, palliative care is "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psycho-social and spiritual." The goal of the study was to generate comparative effectiveness research evidence to support the delivery of coordinated, community-based palliative care that effectively implements care plans consistent with the goals and preferences of older adults with advanced illness and their caregivers.
This study included a pragmatic, two-arm, multi-site randomized controlled trial of older adults (50+ years) with either poor prognosis cancer or end-stage organ failure who were recruited during an emergency department (ED) visit, along with their informal caregivers, to compare nurse-led telephonic case management to facilitated, outpatient specialty palliative care on: 1) quality of life in patients, 2) loneliness, 3) healthcare use in the 12 months following enrollment, 4) symptom burden, 5) caregiver strain, 6) caregiver quality of life, and 7) bereavement.
Improving Family-Centered Pediatric Trauma Care: The Standard of Care Versus the Virtual Pediatric Trauma Center, California, 2020-2022 (ICPSR 39210)
Privacy-Preserving Analytic and Data-Sharing Methods for Clinical and Patient-Powered Data Networks [Methods Study], California, Colorado, and Washington, 2014-2018 (ICPSR 39563)
Sometimes a study can get better results using data from different sites. In these cases, researchers may want to share patient data, including personal and private information such as dates of birth and addresses. However, researchers may not want to share data across sites because of worries about patient privacy. Some statistical methods can change patients' sensitive individual data into summary data that hides individuals' personal information. These privacy-protecting methods, or PPMs, make it safe to share data across sites. But researchers don't know if PPMs produce accurate results.
In this study, the research team compared combinations of PPMs with methods that use patients' individual data.
To access the methods, software, and R package, please visit the distributed GitHub.