Results Summary

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Patients who are being treated for cancer may have symptoms that affect their quality of life. Many of the clinics that treat cancer do not have a way to help patients decide how to manage treatment-related symptoms such as pain, nausea and vomiting, or constipation. Often, patients and their caregivers are not sure when to contact their doctors about symptoms or what to tell them.

Project Purpose

This study developed and tested a way to help patients with cancer manage and communicate about the symptoms from their treatment. The researchers wanted to know if they could create a decision-support computer program that gives patients suggestions about

  • How to manage their symptoms
  • When to talk to their doctors about their symptoms
  • What to say when they call their doctors

The suggestions provided by the program would be based on symptom and quality-of-life information that the patient provided through a computer survey.

Methods

The project had two parts.

In the first part, the researchers talked with 64 cancer patients and caregivers and 51 clinicians (doctors, physician assistants, nurse practitioners, and nurses) in groups and individual interviews. All of the patients, caregivers, doctors, physician assistants, nurse practitioners, nurses, and experts were from the Dana-Farber Cancer Institute network.

The researchers used group and individual interviews to learn how patients managed information about symptoms during cancer treatment. The researchers also asked the groups about what kind of information would be useful when making decisions, and in what form they wanted to receive the information.

The researchers shared this information with a group of experts, including patients who had survived cancer and their caregivers. This group helped to decide what would be included in the computer program.

In the second part of the project, researchers worked with health communication experts at the Dana-Farber Harvard Cancer Center to create the decision-support computer program. The program asked patients for information about their pain, nausea, vomiting, and constipation. Using the information patients provided, the computer program suggested ways to manage their symptoms, when to call their doctor, and what to tell the doctor.

The researchers tested the decision-support computer program with patients and caregivers to see if it was easy to understand and useful. The researchers asked whether the language in the program was clear and made sense. They then made improvements based on the feedback they received. The researchers also asked patients, caregivers, doctors, physician assistants, nurse practitioners, and nurses to fill out a survey so that they could collect feedback about the program.

Findings

After talking to the participants who used the decision-support computer program, the researchers found five things that patients and caregivers thought the program should do. Participants felt it should

  • Make sure patients stay safe
  • Make health information easy to understand
  • Help patients talk with their doctor
  • Help patients feel in charge of their health
  • Help patients know whom to get help from

The answers to the survey questions showed that patients, caregivers, and doctors thought the decision-support computer program would be useful.

Limitations

Everyone in the study was from the same health system. All patients were adults getting outpatient cancer treatment in different clinics within that system. The results might be different in other health systems, for children, or for patients who are getting treatment for cancer during a hospital stay.

Conclusion

Patients and caregivers said that they needed help knowing when to call a doctor and what to say about symptoms. The researchers made a decision-support computer program to meet those needs. Patients, caregivers, and clinicians found the program to be useful.

Sharing the Results

The researchers presented this work at national meetings and prepared manuscripts for professional journal articles.

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Dissemination Activities

Through limited competition, PCORI awarded 25 of the 50 Pilot Projects up to $50,000 to support dissemination and implementation of their activities and findings through the PCORI Pilot Project Learning Network (PPPLN) funding. The deliverables listed below are a result of convenings and conferences supported by this funding, whose efforts align with the PCORI strategic goal of disseminating information and encouraging adoption of PCORI-funded research results.

Period: September 2015 to December 2015
Budget: $50,000

Presentations

American Medical Informatics Association 2015 Conference

  • "Developing Clinical Decision Support for Patient Self-Management: A Prototype for Symptom Management in Cancer Patients"
  • "Design Principles for Clinical Decision Support for Direct Use by Patients: Addressing Symptom Self-Management in Cancer Patients"

Project Information

Mary E. Cooley, PhD, CRNP, MSN
Dana-Farber Cancer Institute
$662,145
Decision Support for Symptom and Quality of Life Management

Key Dates

June 2012
December 2014
2012
2014

Study Registration Information

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State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022