Search results

Showing 1 – 7 of 7 results.
Curated

Development of Practical Outcome Measures to Account for Individual Differences and Temporal Changes in Quality of Life Appraisal [Methods Study], New York, 2013-2019 (ICPSR 39472)

Released/updated on: 2025-08-27
Geographic coverage: New York City, United States
Time period: 2013-01-01--2019-01-01

Many research studies seek to learn how treatments affect patients' quality of life. Quality of life includes mood and energy. It also includes how people view their roles in their families or communities and whether they can perform those roles. Researchers use surveys to ask about patients' quality of life. But patients may answer the same question differently depending on different characteristics, such as their age or where they live. Some patients may think about their work roles while others may think about their families or social lives. How patients think about quality of life can affect what researchers learn about the effects of treatment.

In this study, the research team tested two surveys they created to measure differences in how patients think about their quality of life. The first, long survey had 74 questions, and the second, short survey had 23 questions.

Curated

Emergency Medicine Palliative Care Access (EMPallA), United States, 2018-2022 (ICPSR 39115)

Released/updated on: 2025-10-28
Geographic coverage: United States, Illinois, Massachusetts, Connecticut, Ohio, California, Florida, New York (state), New Jersey, Michigan
Time period: 2018-04-16--2022-08-14

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.

Curated

Measuring Patient-Centered Communication for Colorectal Cancer Care and Research [Methods Study], North Carolina, 2013-2018 (ICPSR 39491)

Released/updated on: 2025-09-08
Geographic coverage: North Carolina, United States
Time period: 2013-01-01--2018-01-01

Patients are often more satisfied with care when it matches their goals. To provide care that matches what matters to patients, doctors and other clinical staff need to communicate well with patients so they can learn about their needs and concerns. Healthcare organizations can use patient surveys to measure how well clinicians communicate with patients. To be useful, a survey needs to be

  • Valid, or correctly capturing how well doctors communicate
  • Reliable, or getting the same results over time

In this study, the research team created and tested a survey for patients getting care for colorectal cancer that asked about communication between the patient and their care team.

Curated

PRO-TECT: Electronic Patient Reporting of Symptoms During Outpatient Cancer Treatment, United States, 2017-2022 (ICPSR 39449)

Released/updated on: 2025-09-11
Geographic coverage: United States
Time period: 2017-10-30--2022-03-23

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:

  1. Determine whether integrating electronic patient-reported outcomes (ePRO) in cancer care improves patient-centered outcomes;
  2. Elicit perspectives about benefit burden tradeoffs for integrating patient-reported outcomes into clinical workflow; and
  3. 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.

Curated

Statistical Methods for Development, Validation, and Implementation of Absolute Risk Models [Methods Study], 2016-2022 (ICPSR 39730)

Released/updated on: 2026-03-12
Time period: 2016-01-01--2022-01-01

Factors, such as personal traits, behaviors, or the environment, can affect a person's risk of getting an illness. Doctors can use risk models, which account for these factors, to predict a person's chance of getting an illness. The risk models group patients into different levels for certain illnesses, such as high risk or low risk.

Most risk models look at only a small number of factors, which affects how well the models can separate patients into different levels. Combining factors from different studies into a single risk model may improve how well the model works. Researchers can use statistical methods to combine data from different studies. But current methods don't work when the studies look at different traits or other factors.

In this study, the research team developed a new method for combining data from studies that have information on different risk factors. The new method is called Generalized Meta-Analysis, or GENMETA.

To access the R package, please visit the Implements Generalized Meta-Analysis Using Iterated Reweighted Least Square Algorithm CRAN webpage.

Curated

Structured Approach to Prioritizing Cancer Research Using Stakeholders and Value of Information [Methods Study], United States, 2008-2018 (ICPSR 39518)

Released/updated on: 2025-10-23
Geographic coverage: United States
Time period: 2008-01-01--2018-01-01

Organizations that fund cancer research need to decide which studies to fund. Value of information (VOI) is a way to help rank research studies. VOI estimates the value of research by looking at the impacts on health and on healthcare that could result from the research.

SWOG (formerly the Southwest Oncology Group) is a network of cancer researchers funded by the National Cancer Institute. SWOG leaders review and score new study proposals based on the scientific value of the studies and their potential impact. Based on a study's score, SWOG's leadership committee decides whether to send the study to the National Cancer Institute for funding review.

In this study, the research team wanted to learn if giving VOI data to the committee affected its scoring of proposals. The team also wanted to see if providing VOI data was helpful in deciding which studies to fund. The study had two parts. The research team created a process to quickly estimate VOI. Then, the team tested the process on nine study proposals that the SWOG committee reviewed.

Curated

Visual Displays of Qualitative Data to Advance Patient Centered Outcomes Research [Methods Study], United States, 2015-2020 (ICPSR 39506)

Released/updated on: 2025-10-22
Geographic coverage: United States
Time period: 2015-01-01--2020-01-01

Data collected from interviews and group discussions, called qualitative data, can help researchers understand people's experiences, values, and cultures. But large amounts of qualitative data can be hard to show in a way that's easy for people to understand.

In this study, the research team created charts called ethnoarrays. These charts use color coding to show individual stories and overall patterns in qualitative data. The team wanted to learn whether ethnoarrays were useful and easy to understand.

Back to top