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Service Delivery Innovation Profile

Assessment Tool Helps Clinicians Understand and Address Quality-of-Life Concerns for Those With Diabetes, Generating Positive Feedback From Clinicians and Patients


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Snapshot

Summary

Providers in 11 southeast Minnesota counties have their patients with diabetes complete a real-time, easy-to-use assessment tool that helps in identifying and addressing their biggest quality-of-life concerns. Completed just before each visit, the tool asks patients to identify their biggest concern, complete a checklist that helps define specific aspects of that concern, and rank various aspects of their perceived well-being. Based on the patient’s responses, the tool generates a list of interventions that could help the patient (tailored to the site using the tool), including treatment modifications and referrals to locally available resources. The electronic version also generates a graphic depiction of trends in patient responses over time. Although a formal, survey-based evaluation of the program is not yet complete, it has generated overwhelmingly positive feedback from patients and clinicians.

Evidence Rating (What is this?)

Suggestive: The evidence consists of anecdotal feedback from patients and clinicians who have used the assessment tool.
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Developing Organizations

Southeast Minnesota Beacon Community
The Southeast Minnesota Beacon Community created this program in collaboration with the Mayo Clinic, Mayo Clinic Health System, Olmsted Medical Center, Winona Health, Allina Health, and public health departments in 11 counties.end do

Use By Other Organizations

The tool is used in medical practices and county health departments throughout southeastern Minnesota, as well as at sites in Utah, Michigan, New York, and Toronto.

Date First Implemented

2010

Problem Addressed

Patient reports on quality of life (QOL) and related outcomes have been shown to have value in helping clinicians understand and address their problems, particularly in diabetes care. However, tools to gather this information tend to be cumbersome and time  consuming for patients to complete, and difficult for providers to interpret. In addition, most tools do not offer actionable information for either clinicians or patients.
  • Potential value of patient-reported outcomes: Patient report is the best available method for obtaining information on many QOL-related outcomes, including pain, level of depression, and QOL itself. The patient is often in the best position to report on symptoms and the results of treatment. Patient reports may be more reliable and valid than information gathered via clinician interviews with patients, and patient reports can provide unique information about a patient’s perception of a disease.1
  • Particularly with diabetes care: Research has concluded that patient-reported outcomes have “enormous potential” to improve health care quality, particularly in diabetes care.2 A study of 6 general and 16 diabetes-specific instruments found strong evidence of their validity and reliability, and recommended widespread clinical use of these tools in assessing the impact of diabetes on patients’ health status and QOL.2 Many clinicians and patients support incorporating patient-reported outcomes into care decisionmaking, given that patient-reported outcomes appear to be associated with better long-term outcomes, including improvements in functional capacity, complications, mortality, health, and QOL.3
  • Cumbersome and impractical in real-world clinical settings: Despite these benefits, most practices do not routinely use patient-reported outcome measurement tools.4 Generally developed for research purposes, these tools tend to be impractical for use in the clinical setting, as they can be quite lengthy and time consuming for patients to complete. In addition, the tools often do not provide actionable information, as clinicians cannot easily interpret the information gathered, discern the most important issues facing the patient, or determine what to do based on the information.5

What They Did

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Description of the Innovative Activity

Providers in 11 southeast Minnesota counties have their patients with diabetes complete a real-time, easy-to-use assessment tool that helps in identifying and addressing their biggest QOL concerns. Completed just before each visit, the tool asks patients to identify their biggest concern, complete a checklist that helps define specific aspects of that concern, and rank various aspects of their perceived well-being. Based on the patient’s responses, the tool generates a list of interventions that could help the patient (tailored to the site using the tool), including treatment modifications and referrals to locally available resources. The electronic version also generates a graphic depiction of trends in patient responses over time. Key elements of the program are outlined below:
  • Paper or electronic version completed at care site: Most patients complete the tool while waiting to see their provider, filling out either a paper version or accessing a Web-based version through a computer or smartphone. The tool is available at different care sites, including physician offices and county health department care sites and can also be completed from home by patients about to see a home health provider.
  • Easy-to-complete tool: Patients can complete the tool in an average of 3 minutes. As outlined below, the tool helps the patient identify his or her biggest concern, describe that concern in greater detail, and rate his or her well-being.
    • Biggest concern: After a brief introduction that explains the purpose of the tool and that the information gathered will become part of the medical record, the tool asks patients to identify the biggest concern they would like to address during the visit and to answer a few questions about how they are feeling that day. In making their choice, patients select from 10 categories of concerns commonly expressed by patients with diabetes: personal relationships, physical health, health monitoring, emotional health, monetary concerns, health behaviors, medications, getting health care, work-related concerns, or something else.
    • Detailed description of identified concern: Once patients select a concern, they complete a checklist of items that allows them to describe their concern more specifically. For example, patients who check “monitoring health” as their biggest concern are presented with a nine-item checklist that lists specific health monitoring difficulties, such as testing blood sugar, keeping records of blood sugar, checking blood pressure, and monitoring weight.
    • Patient rating of well-being: In the last section of the tool, patients rate their well-being on a scale of 0 to 10 (with "0" being “as bad as it can be” and "10" being “as good as it can be”) for the following 6 measures: overall QOL, overall physical well-being, overall emotional well-being, social interaction, pain severity, and level of fatigue. Patients also rate the following statements on a scale of 0 to 10 (from “not at all” to “as bad as it can be”):
      • “I find it hard to do all the things I have to do for my diabetes.”
      • “I have felt overwhelmed by the demands of living with diabetes.”
      • “How much was the quality of your life affected by the time required to control your diabetes?”
  • Actionable suggestions to address concerns: Based on the patient’s responses, the electronic program generates a tailored report for the clinician that summarizes the patient’s concerns and includes specific suggestions to address them, including potential treatment modifications and external resources and referrals. The paper tool offers similar support through suggestions that appear on the flip side of each checklist. (Each implementing site adapts the tool to ensure that the suggestions are appropriate and relevant to the practice and local community resources.) For example, suggestions for patients who express money-related concerns might include contact with account services for information on payment options, a review of the patient’s medication list for opportunities to substitute generic or less expensive options, and options for free and reduced eye and dental care. The electronic report also includes a graphic depiction of trends in QOL over time, as well as alerts highlighting a clinically meaningful decline or a clinically deficient score on any scale. During the visit, the clinician discusses these suggestions and trends with the patient and implements them as appropriate.

Context of the Innovation

The Beacon Program is a community-based initiative funded by the U.S. Department of Health and Human Services Office of the National Coordinator for Health Information Technology. The program supports medical practice and research coalitions, called Beacon Communities, in promoting the meaningful use of health information technology by patients and clinicians, so as to improve care quality, safety, and efficiency, and enhance population health.

The Southeast Minnesota Beacon Community spans 11 counties and includes public health offices, hospitals, physician practices and other providers, and school districts. Principal collaborating institutions include Austin Medical Center, Mayo Clinic, Olmsted Medical Center, and Winona Health Services. The Southeast Minnesota Beacon Community has chosen to focus on two health conditions—childhood asthma and adult type 2 diabetes—that are highly prevalent in the area and are associated with poor QOL and increased morbidity, mortality, and health care costs. The goal for the Southeast Minnesota Beacon Community is to understand the scope of these two health conditions and use information technology to create a communication system for coordinating and improving care for these patients across the various health care systems that serve them. This program is a part of its efforts to address diabetes.

Did It Work?

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Results

The program has generated overwhelmingly positive feedback from patients and clinicians; a formal, survey-based evaluation of the program is ongoing.
  • Positive reports from patients: Anecdotal feedback from patients suggests that the tool is helpful. Selected quotes include the following:
    • “It’s about time somebody asked what matters to me.”
    • “This gives me an opportunity to make sure that things I wanted to mention to the doctor will actually get mentioned.”
  • Similar reports from clinicians: Providers also view the tool quite favorably, noting that it opens doors to communication with patients, facilitates a focused discussion about what is most important to the patient, raises issues that otherwise would not have been mentioned, and provides actionable information about how to address patient concerns.

Evidence Rating (What is this?)

Suggestive: The evidence consists of anecdotal feedback from patients and clinicians who have used the assessment tool.

How They Did It

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Planning and Development Process

Selected steps included the following:
  • Identifying QOL issues: After obtaining the grant funding and determining that capturing QOL was important, Mayo Clinic researchers, clinicians, patients, and patient advocates formed a group to evaluate what QOL issues and concerns should be incorporated into an assessment tool. The group sought advice from public health experts in various Minnesota counties and subsequently developed a long list of possible items.
  • Holding focus groups: The Mayo Clinic group held five focus groups with providers and patients in four different clinics to obtain feedback about the preliminary list of concerns. Feedback highlighted the need to pare down the list and develop a process that would minimize the time to complete the tool and act on the responses.
  • Finalizing tool: After considering focus group feedback, the group realized the value in getting patients to identify their biggest concern. This finding led to the decision to organize the tool as a choice among 10 major concerns and the associated checklists.
  • Creating software: Mayo Clinic computer programmers developed an online version of the tool. Information technology staff associated with the Southeastern Minnesota Beacon Program incorporated the tool into the Beacon system (which includes other online tools as well).
  • Testing tool: The tool was tested in three different sites before expansion to all Beacon practices.
  • Expanding to additional populations: Program developers plan to adapt the tool to other patient populations, including critical care, cancer, and chronic obstructive pulmonary disease patients.

Resources Used and Skills Needed

  • Staffing: The program requires no new staff, as existing staff incorporate it into their daily routines with minimal burden.
  • Costs: Development costs for the tool totaled $12.3 million over 3 years. However, would-be adopters need not absorb that cost, as the tool is available free of charge to any medical practice. Adopting practices may need to allocate some resources to tailor the tool to the local environment. (See Tools and Other Resources section for details.)
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Funding Sources

Mayo Clinic; U.S. Department of Health and Human Services Office of the National Coordinator for Health Information Technology
The U.S. Department of Health and Human Services Office of the National Coordinator for Health Information Technology funded the program through the Beacon Community Cooperative Agreement Program, which provided 3-year grants to 15 communities to build and strengthen their health information technology infrastructure and capabilities. Once the Southeast Minnesota Beacon Program’s 3-year grant ends, the Mayo Clinic will assume the costs associated with maintaining and updating the tool and adapting it for other medical conditions.end fs

Tools and Other Resources

The electronic version of the tool is available at http://informatics.mayo.edu/proqol. Although the Mayo Clinic does not have the capacity to assist with implementation of the tool, it can share the tool’s computer code with interested organizations, allowing them to adapt it to their own settings.

More information about the U.S. Department of Health and Human Services Office of the National Coordinator for Health Information Technology's Beacon Program is available at http://www.healthit.gov/policy-researchers-implementers/beacon-community-program.

More information about the Southeastern Minnesota Beacon Community is available at the following links:

Adoption Considerations

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Getting Started with This Innovation

  • Identify clinical champion: A physician or nurse who believes in the tool's value should promote its use by highlighting its value in improving patient care and by helping the practice incorporate it into the workflow.
  • Customize report based on site-specific resources: Each organization should customize the instructions and suggestions generated based on site-specific feedback from clinicians and others in the practice who know about available practice and community resources.
  • Decide on appropriate placement in workflow: Use of the tool should fit into the practice’s workflow, thus avoiding disruption to existing processes and ensuring its ongoing use. The use of the tool becomes self-sustaining and routine once it becomes part of the workflow.

Sustaining This Innovation

  • Elicit feedback and refine approach accordingly: Periodically elicit feedback from clinicians and patients about how the tool is working and make adjustments as necessary.
  • Periodically update suggestions in report: The suggestions generated by the system should be updated periodically based on clinician feedback regarding their usefulness.

Use By Other Organizations

The tool is used in medical practices and county health departments throughout southeastern Minnesota, as well as at sites in Utah, Michigan, New York, and Toronto.

More Information

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Contact the Innovator

Jeff A. Sloan, PhD
Professor of Biostatistics
Professor of Oncology
Mayo Clinic
Harwick 8-29
200 First Street SW
Rochester, MN 55905
(507) 261-4268
E-mail: jsloan@mayo.edu

Innovator Disclosures

Dr. Sloan reported having no financial interests or business/professional affiliations relevant to the work described in this profile other than the funders listed in the Funding Sources section.

References/Related Articles

Southeast Minnesota Beacon Program. Available at: http://semnbeacon.wordpress.com/about/projects/.

New diabetes model uses patient-reported outcomes to deliver effective health care. Endocrine Today. 2012 Aug. Available at: http://www.healio.com/endocrinology/diabetes/news/print/endocrine-today/%7B0c84a4aa-019e-409d-812c-c3ca65ff5438%7D/new-diabetes-model-uses-patient-reported-outcomes-to-deliver-effective-health-care.

Footnotes

1 Gwaltney CJ, Shields AL, Shiffman S. Equivalence of electronic and paper-and-pencil administration of patient-reported outcome measures: a meta-analytic review. Value Health. 2008;11(2):322-33. [PubMed]
2 Gibbons E, Fitzpatrick R. Patient-reported outcome measures: a structured review of patient-reported outcome measures (PROMs) for diabetes. Report to the Department of Health, 2009. University of Oxford (UK).
3 Rubin RR, Peyrot M, Siminerio LM. Health care and patient-reported outcomes: Results of the cross-national Diabetes Attitudes, Wishes and Needs (DAWN) study. Diabetes Care. 2006;29:1249-55. [PubMed]
4 National Quality Forum. Patient-Reported Outcomes. Available at: http://www.qualityforum.org/Projects/n-r/Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx.
5 Valderas JM, Kotzeva A, Espallargues M, et al. The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Qual Life Res. 2008;17(2):179-93. [PubMed]
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Original publication: April 24, 2013.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: April 24, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.