Implementing a Low-Literacy, Multimedia Information Technology System to Enhance Patient-Centered Cancer Care (Illinois)

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Implementing a Low-Literacy, Multimedia Information Technology System to Enhance Patient-Centered Cancer Care - 2012

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    RFA: HS07-007: Ambulatory Safety and Quality Program: Enabling Patient-Centered Care Through Health Information Technology (PCC)
  • Grant Number: 
    R18 HS 017300
  • Project Period: 
    September 2007 – September 2012
  • AHRQ Funding Amount: 
    $1,198,839
  • PDF Version: 
    (PDF, 300.73 KB)

Summary: Information about cancer, if delivered in a user-friendly way, can reach individuals with limited literacy skills. This project hypothesized that promoting patient understanding of disease and treatment through innovative information delivery methods would lead to better communication, treatment adherence, and outcomes including patient satisfaction with health care, cancer-related knowledge, self-efficacy, treatment, and health-related quality of life (HRQL).

This project modified a widely used talking touchscreen multimedia information and assessment system for patients being treated for breast and colorectal cancer to be more accessible for patients across the spectrum of literacy skills. The CancerHelp® Talking Touchscreen (TT), developed by the CancerHelp Institute and investigators on this grant, is available at participating clinics during office hours via onsite kiosk. The software provides patient education on diagnoses, treatment, support, side effects, prevention, and screening. It contains easy-to-access cancer information from the National Cancer Institute, user statistics, and customizable features. Strategies to increase understanding of the material and program navigation were implemented. For example, the amount of text on each screen was shortened; patients had the option to listen to an audio presentation of education materials, communication tools, and assessment questions; and videos were developed for certain modules.

The intervention was evaluated through a randomized controlled trial (RCT) with a targeted enrollment of 200 patients with breast or colorectal cancer at three ambulatory cancer care centers. Patients in both the intervention and control groups used the TT to complete surveys on knowledge, satisfaction, HRQL, and other study measures as many as three times during treatment and once afterwards. Both groups received diagnosis- and treatment-specific brochures; however, only patients randomized to the intervention arm had access to the intervention-adapted software. The Behavioral Model for Vulnerable Populations, which assesses patient characteristics, resources, needs, health behaviors, and health outcomes ,was also used to assess study outcomes.

Specific Aims:

  • Test whether a low-literacy-friendly multimedia information and assessment information technology system used in daily clinical practice improves patient outcomes during treatment in 200 recently-diagnosed breast and colorectal cancer patients based on the primary endpoints: satisfaction with health care communication, knowledge of cancer and treatment, self-efficacy, adherence to recommended treatment, and HRQL. (Achieved)
  • Evaluate the relationships between patient characteristics, resources, needs, health behaviors, and health outcomes using the Behavioral Model for Vulnerable Populations. (Achieved)
  • Test whether use of the multimedia information technology system improves adherence to recommended post-treatment surveillance care and HRQL during the early post-treatment surveillance period (3 months after treatment). (Achieved)

2012 Activities: The research team continued to recruit and enroll patients into the RCT. During regular visits to cancer care centers for treatment, participants interacted with the adapted CancerHelp® TT that enabled patients to print information and generate a visit-specific checklist of their top priorities to discuss with their providers. At the conclusion of their in-clinic cancer treatments, participants in the intervention arm also received a post-treatment cancer survivorship care plan, modeled on templates from the Institute of Medicine (IOM). The survivorship care plan summarized the cancer treatments they had received and provided appropriate aftercare recommendations, including detailed contact information for future appointments. Oncologists were asked to review care plans with participants and instruct them to provide a copy to their primary care physicians (PCPs). This survivorship care plan was designed to minimize the interruptions in care that can occur when patients complete their cancer treatments. To complete the study, the study team conducted an analysis to evaluate the impact of the modified CancerHelp® TT.

Due to challenges with patient recruitment, Ms. Hahn used two 1-year no-cost extensions to complete the trial and data collection. As last self-reported in the AHRQ Research Reporting System, project progress was on track in some respects but not others, and project budget spending was on track. At the end of the project, all aims and milestones were achieved. This project was completed in September 2012.

Impact and Findings: Thirteen patients were enrolled in field testing that was completed near the end of 2009. Patient feedback was largely positive and was used to improve the software. Newly-diagnosed breast and colorectal cancer patients (n=129) self administered the questionnaires using the TT kiosk in clinic waiting rooms. Patients—even those who were computer-naïve—completed questionnaires on their own or with minimal assistance. Clinician compliance with developing and distributing the survivorship plans was a challenge because clinicians were frequently pressed for time. As a result, research assistants completed as much of the plans as possible, gave them to study participants, and encouraged them to share the plans with their PCPs for discussion of ongoing care.

Data analysis indicated that participants in the TT intervention group trended toward a larger increase in satisfaction with communication, HRQL, health beliefs, and cancer knowledge compared to the control group, although differences were not statistically significant. Health literacy was moderately associated with better HRQL, higher cancer knowledge, and more adaptive health beliefs. Ms. Hahn reported that this study was extremely informative regarding the feasibility, acceptability, and implementation of
survivorship care plans. While the IOM recommends that every cancer patient receive a survivorship plan, providers often do not have the time to develop them. Ms. Hahn reported that an automated mechanism for developing survivorship care plans could facilitate the process. The CancerHelp® TT kiosk and software continues to be used at one of the clinical sites as part of regular educational initiatives.

Target Population: Adults, Cancer: Breast and Colorectal, Low Literacy, Low SES/Low Income*, Medically Underserved, Racial or Ethnic Minorities*, Safety Net, Women*

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions in care settings, and the use of electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

* This target population is one of AHRQ’s priority populations.

Implementing a Low-Literacy, Multimedia Information Technology (IT) System to Enhance Patient-Centered Cancer Care - 2011

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    RFA: HS07-007: Ambulatory Safety and Quality Program: Enabling Patient-Centered Care Through Health Information Technology (PCC)
  • Grant Number: 
    R18 HS 017300
  • Project Period: 
    September 2007 - September 2012
  • AHRQ Funding Amount: 
    $1,198,839
  • PDF Version: 
    (PDF, 204.73 KB)

Summary: Information about cancer, if delivered in a user-friendly way, can reach peoples with limited literacy skills. This research team, led by Elizabeth Hahn, hypothesizes that promoting patient understanding of disease and treatment through innovative information delivery methods will lead to better communication; treatment adherence; and outcomes including patient satisfaction with health care, cancer-related knowledge, self-efficacy, treatment, and health-related quality of life (HRQL).

This project modified a widely-used talking touchscreen multimedia information and assessment system for patients being treated for breast and colorectal cancer to be more accessible for patients across the spectrum of literacy skills. The CancerHelp(R) Talking Touchscreen (TT), developed by the CancerHelp Institute and investigators on this grant, is available at participating clinics during office hours via a kiosk at the site. The software provides patient education on diagnoses, treatment, support, side effects, prevention, and screening. It contains easy access to cancer information from the National Cancer Institute, user statistics, and customizable features. Strategies to enhance the ease of understanding of the material and navigating through the program will be implemented. For example, the amount of text on each screen will be shortened; patients will have the option to choose between text-based or audio presentation of education materials, communication tools, and assessment questions; and videos will be developed for certain modules.

The intervention is being evaluated through a randomized controlled trial (RCT) with a targeted enrollment of 200 patients with breast or colorectal cancer at three ambulatory cancer care centers. Patients in both the intervention group and control group will use the TT to complete surveys on knowledge, satisfaction, HRQL, and other study measures, as many as three times during treatment and once afterwards. Both groups will receive diagnosis- and treatment-specific brochures; however, only patients randomized to the intervention arm will have access to the intervention-adapted software. The Behavioral Model for Vulnerable Populations, which assesses patient characteristics, resources, needs, health behaviors, and health outcomes, will also be used to assess study outcomes.

During regular visits to cancer care centers for treatment, participants interact with the adapted CancerHelp(R) TT that enables patients to print information and generate a visit-specific checklist of their top priorities to discuss with their providers. At the conclusion of their in-clinic cancer treatments, participants in the intervention arm also receive a post-treatment cancer survivorship care plan, modeled on templates from the Institute of Medicine (IOM). The survivorship care plan summarizes the cancer treatments they have received and provides appropriate aftercare recommendations, including detailed contact information for future appointments. Participants' oncologists review the care plan with the participants and instruct the participants to provide a copy to their primary care physicians (PCPs). This survivorship care planning is designed to minimize the interruptions in care that can occur when patients complete their cancer treatments.

Specific Aims:

  • Test whether a low-literacy-friendly multimedia information and assessment information technology system used in daily clinical practice improves patient outcomes during treatment in 200 recently-diagnosed breast and colorectal cancer patients based on the primary endpoints: satisfaction with health care communication, knowledge of cancer and treatment, self-efficacy, adherence to recommended treatment, and HRQL. (Ongoing)
  • Evaluate the relationships between patient characteristics, resources, needs, health behaviors, and health outcomes using the Behavioral Model for Vulnerable Populations. (Ongoing)
  • Test whether use of the multimedia information technology system improves adherence to recommended post-treatment surveillance care and HRQL during the early post-treatment surveillance period (3 months after treatment). (Upcoming)

2011 Activities: The research team continued to recruit and enroll patients into the RCT. The team held regular onsite meetings with the directors of the three participating sites to review procedures for identifying and enrolling patients. These meetings facilitate communication, organization of patient data, and identification of the physician responsible for presenting the survivorship plan to the patient. The project has now recruited 129 of 200 patients. Due to lower-than-expected patient volume, it may not be possible to reach the recruitment goal. However, because the power calculations were based on a modest improvement in the outcome, Ms. Hahn expects that there will be enough statistical power to detect a strong impact, even with lower enrollment.

Survivorship plans continue to be developed for intervention arm patients. Clinician compliance with developing and distributing the plans continues to be a challenge, as clinicians do not always have enough time. As a result, research assistants complete as much of the plan as possible and the plans are given to study participants who are encouraged to share them with their PCPs for discussion of ongoing care.

As last self-reported in the AHRQ Research Reporting System, project progress and activities are mostly on track with the revised timeline and project budget spending is roughly on target. The project team is using two 1-year no-cost extensions to provide extra time to for study recruitment and data analysis.

Preliminary Impact and Findings: Thirteen patients were enrolled in field testing that was completed toward the end of 2009. Patient feedback was largely positive and was used to improve the software. Ms. Hahn reports that this study has been extremely informative regarding the feasibility, acceptability, and implementation of survivorship care plans. While the IOM recommends that every cancer patient receives a survivorship plan, providers often do not have the time to develop the plan. Ms. Hahn reports that an automated mechanism for developing survivorship care plans could facilitate the process.

Target Population: Adults, Cancer: Breast and Colorectal, Low Literacy, Low SES/Low Income*, Medically Underserved, Safety Net

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions in care settings, and the use of electronic exchange of health information to improve quality of care. 

Business Goal: Implementation and Use

* This target population is one of AHRQ's priority populations.

Implementing a Low-Literacy, Multimedia Information Technology (IT) - 2010

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    RFA: HS07-007: Ambulatory Safety and Quality Program: Enabling Patient-Centered Care Through Health Information Technology (PCC)
  • Grant Number: 
    R18 HS 017300
  • Project Period: 
    September 2007 – September 2011, Including No-Cost Extension
  • AHRQ Funding Amount: 
    $1,198,839
  • PDF Version: 
    (PDF, 543.83 KB)


Target Population: Adults, Cancer, Low Literacy, Low SES/Low Income*, Medically Underserved, Safety Net

Summary: Cancer-related information, if delivered in a user-friendly way, can reach populations with limited literacy skills. The research team hypothesizes that promoting patient understanding of disease and treatment through innovative information delivery methods will in turn promote better communication; treatment adherence; and outcomes including patient satisfaction with health care, patient-provider communication, cancer-related knowledge, patients’ self-efficacy, treatment, and health-related quality of life (HRQL).

This project modifies a widely-used talking touchscreen multimedia information and assessment system for patients being treated for breast and colorectal cancer to be more accessible for patients across the spectrum of literacy skills. The CancerHelp® Talking Touchscreen (TT), developed by the CancerHelp Institute and investigators on this grant, is available at any time during clinic hours via a kiosk at the site. The software provides patient education on diagnoses, treatment, support, side effects, prevention, and screening. It contains easy access to cancer information from the National Cancer Institute, user statistics, and customizable features. Strategies will be implemented to enhance the ease of understanding the material and navigating through the program. For example, the amount of text on each screen will be shortened; patients will have the option to choose between text-based or audio presentation of education materials, communication tools, and assessment questions; and videos will be developed for certain modules.

During regular visits to cancer care centers for treatment, participants will interact with the adapted CancerHelp TT, which will enable patients to print information and generate a visit-specific checklist of their top priorities to discuss with their providers. At the conclusion of their in-clinic cancer treatments, participants in the intervention arm will also receive a post-treatment cancer survivorship care plan, modeled on templates from the Institute of Medicine. The survivorship care plan summarizes the cancer treatments they have received and provides appropriate aftercare recommendations, including detailed contact information for future appointments. Participants’ oncologists review the care plan with them and instruct them to provide a copy to their primary care physicians. This survivorship care planning is designed to minimize the interruptions in care that can occur when patients complete their cancer treatments.

The intervention will be evaluated through a randomized controlled trial (RCT) of 200 patients with breast or colorectal cancer conducted at three ambulatory cancer care centers. Patients in both the intervention group and control group will use the TT to complete surveys on knowledge, satisfaction, HRQL, and other study measures up to three times during treatment and once afterwards. Both groups will receive diagnosis- and treatment-specific brochures; however, only patients randomized to the intervention arm will have access to the software adapted for this intervention.

Specific Aims:
  • Test whether a low-literacy-friendly multimedia information and assessment information technology system used in daily clinical practice improves patient outcomes during treatment in 200 recently diagnosed breast and colorectal cancer patients based on the primary endpoints: satisfaction with health care communication, knowledge of cancer and treatment, self-efficacy, adherence to recommended treatment, and HRQL. (Ongoing)
  • Evaluate the relationships between patient characteristics, resources, needs, health behaviors, and health outcomes using the Behavioral Model for Vulnerable Populations. (Upcoming)
  • Test whether use of the multimedia information technology system improves adherence to recommended post-treatment surveillance care and HRQL during the early post-treatment surveillance period (3 months after treatment). (Upcoming)

2010 Activities: At the start of the year, the research team began to recruit and enroll patients into the RCT. The team held regular onsite meetings with the directors of the three participating sites to review procedures for identifying and enrolling patients. These meetings facilitate communication, organization of patient data, and identification of the physician responsible for presenting the survivorship plan to the patient. Two of the three sites are meeting their recruitment goals. The principal investigator and director of the third site met to address their low recruitment numbers and to develop and implement strategies to increase recruitment. However, it was determined that patient volume at the site was lower than expected and therefore the site would not be able to support the target sample size. As a result, the third site will be replaced by a clinic with heavier patient volume. While the team would have preferred to recruit patients from all four sites, this arrangement was not possible due to funding. The principal investigator has met with the director of the new site to discuss the study and recruitment. As of the end of 2010, 50 patients were randomized to the intervention arm and 43 to the control arm.

Grantee's Most Recent Self-Reported Quarterly Status (as of December 2010): Project progress is on track with the revised timeline due to replacing one of the clinics. The project budget is somewhat underspent due to delays in recruitment.

Preliminary Impact and Findings: Thirteen patients were enrolled in field testing that was completed toward the end of 2009. Patient feedback was largely positive, and was used to improve the software. Recruitment and enrollment for the study is in progress. The team has begun to look at preliminary data. Participant characteristics will be assessed as interim recruitment goals are achieved.

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions in care settings, and the use of electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

*AHRQ Priority Population

Project Details - Ended

Project Categories

Summary:

Using technology to promote better patient understanding of their cancer and treatment may improve communication, adherence to treatment, and outcomes. It may also improve patient satisfaction, knowledge, self-efficacy, treatment, and health-related quality of life (HRQL). In particular, technology in the form of a multimedia information and assessment system targeted to individuals with low literacy is hoped to enhance patient-centered care and improve outcomes when used in daily clinic al practice.    

This project evaluated such a system, called the CancerHelp® Talking Touchscreen (TT), targeted to patients being treated for breast and colorectal cancer. The system collected patient self-reported data and provided patient education on diagnoses, treatment, support, side effects, prevention, and screening.

The specific aims of this project were to:          

  • Test whether a low-literacy-friendly multimedia information and assessment information technology system used in daily clinical practice improves patient outcomes during treatment in 200 recently diagnosed breast and colorectal cancer patients based on the primary endpoints: satisfaction with health care communication, knowledge of cancer and treatment, self-efficacy, adherence to recommended treatment, and HRQL.
  • Evaluate the relationships between patient characteristics, resources, needs, health behaviors, and health outcomes using the Behavioral Model for Vulnerable Populations.
  • Test whether use of the multimedia information technology system improves adherence to recommended post-treatment surveillance care and HRQL during the early post-treatment surveillance period (3 months after treatment).        

Patients with Stage I-to-III breast or colorectal cancer receiving chemotherapy and/or radiation therapy were randomized to one of two arms: the CancerHelp-TT intervention or control, stratified by the clinic they attended. A total of 129 patients participated; 65 in the intervention arm and 64 in the control arm. 

The study found no statistically significant difference between the groups in satisfaction with communication, HRQL, health beliefs, or cancer knowledge. It was noted that there was a consistent trend in improvements in the tracked endpoints in the intervention group versus the control group. Health literacy was moderately associated with better HRQL, higher cancer knowledge, and more adaptive health beliefs. Overall, participants rated the CancerHelp-TT software favorably.

Implementing a Low-Literacy, Multimedia Information Technology System to Enhance Patient-Centered Cancer Care - Final Report

Citation:
Hahn E. Implementing a Low-Literacy, Multimedia Information Technology System to Enhance Patient-Centered Cancer Care - Final Report. (Prepared by Northwestern University under Grant No. R18 HS017300). Rockville, MD: Agency for Healthcare Research and Quality, 2012. (PDF, 510.02 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
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