Informing Patient-Centered Care for People with Multiple Chronic Conditions [Methods Study], United States, 2015-2019 (ICPSR 39508)

Version Date: Oct 9, 2025

Cite this study |

Principal Investigator(s):
Cynthia M. Boyd, Johns Hopkins University. School of Medicine

https://doi.org/10.3886/ICPSR39508.v1

Version V1

Slide tabs to view more

Summary

Clinical practice guidelines are recommendations for doctors about when and how to treat health problems. Guidelines are often based on research that compares the benefits and harms of different tests or treatments for one health problem. But this research doesn't always consider that people may have other health problems or different preferences. Guideline developers need to know what is important to patients.

In this study, the research team developed a process to inform development of clinical guidelines. The team wanted to learn how the balance of benefits and harms of treatment options changes when it includes patient preferences. In this new process, the team

  • Defined questions comparing treatment options based on input from patients with three or more long-term health problems
  • Used data from prior research studies to answer these questions and assess the balance of benefits and harms of treatment options
  • Used results from a patient survey, looking to see if the balance of benefits and harms could change when patients have different preferences.

Citation

Boyd, Cynthia M. Informing Patient-Centered Care for People with Multiple Chronic Conditions [Methods Study], United States, 2015-2019. Inter-university Consortium for Political and Social Research [distributor], 2025-10-09. https://doi.org/10.3886/ICPSR39508.v1

Export Citation:

  • RIS (generic format for RefWorks, EndNote, etc.)
  • EndNote

Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1310-07619)

Subject Terms

Geographic Coverage

Distributor(s)

Inter-university Consortium for Political and Social Research
Hide

Time Period(s)

2015 -- 2019
Hide

Study Purpose

To develop methods that incorporate patient preferences in assessing the benefit-harm balance of treatment options to inform care of people with multiple chronic conditions (MCC). This study included 3 aims.

  • Aim 1: Collaborate with people with MCCs and Kaiser Permanente's National Guideline Program and to set priorities for important clinical topics for people with MCCs.
  • Aim 2: In the context of implementing and refining methods of evidence synthesis for people with MCCs, address 2 top-priority topics using innovative, stakeholder-informed approaches for evidence synthesis and multidimensional benefit-harm assessment with the goal of selecting applicable, valid, and precise evidence consistently across subgroups and outcomes.
  • Aim 3: Evaluate and refine the methods used in aims 1 and 2 based on their implementation, and develop guidance for systematic reviewers and guideline developers.

Study Design

Researchers adapted a five-step process to understand how the benefit-harm balance for treatment options for patients with MCC can change when incorporating patient preferences for treatment outcomes. Throughout this process, a group of four patient and caregiver investigators provided input to the research team. The steps included

  • Defining research questions. Researchers conducted focus groups and a prioritization process with 27 patients or caregivers of patients with MCC, to identify comparative effectiveness research questions that were important to patients.
  • Data gathering. Based on systematic reviews, researchers selected the most valid and applicable data sources to answer the questions identified in the focus groups. They also reviewed survey data from 434 patients with MCC to understand which potential harms from treatment patients worry most about.
  • Determining the benefit-harm balance of treatment options across patient subgroups. With data from the systematic reviews, researchers used the Gail Index, a measure that uses the expected number of events for different benefits (e.g., avoiding death) and harms (e.g., increased risk of stroke) to estimate the benefit-harm balance of interventions for each research question for different patient subgroups, defined based on demographics, condition, or other characteristics.
  • Assessing how patient preferences and changes in assumptions change benefit-harm balances. Researchers used survey responses to explore whether the benefit-harm balance depends on individual preferences.
  • Dissemination. Researchers presented the results to guideline developers and other medical professionals to see what additional information would be needed to implement the results in guideline development.

Universe

Patients with multiple chronic conditions

Data Source

Patient and caregiver focus groups, patient preference surveys, results from published intervention studies found through systematic review

Hide

Original Release Date

2025-10-09

Hide

Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

  • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.