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Identifying Patients: Chapter 4

Cover of PROTEUS Guide

In this excerpt (Chapter 4) from the PROTEUS-Practice Guide, you’ll determine which patients should complete patient-reported outcome measures (PROMs) based on your organization’s goals and available resources.

This webpage contains the entire contents of Chapter 4. You can also download the PROTEUS-Practice Guide by clicking here.

Key Points

  • Identifying which patients will complete PROMs (patient-reported outcome measures) is a critical step in the design of a PRO (patient-reported outcome) system
  • Examples of groups who might be asked to complete PROMs include all patients in a healthcare system or specific clinic, patients with a defined condition, or patients receiving a specific treatment/intervention
  • Special accommodations should be made for proxy-report PROs when patients are unable to complete themselves (e.g. pediatric patients)


Determining which patients will complete PROMs (patient-reported outcome measures) is a critical step in the design of a PRO (patient-reported outcome) system. The target audience for PROM completion depends on the overarching goals of the PRO system, as well as the technical and logistical resources available to support the collection and use of this data.

Some PRO systems may decide that it is valuable to collect PRO information from all patients within its purview, be that the broader healthcare system or a specific clinic. This routine collection of PRO information has benefits including promoting a culture of routine data collection. Another approach is to collect PROMs from patients with a specific condition or patients who have undergone a specific treatment/intervention. This targeted approach may facilitate the collection of PRO data that is more clinically relevant to the patient’s current health status.

Not all patients may be able to self-complete PROMs, such as pediatric patients or patients with mental/cognitive impairment. Report of the patient’s health by a proxy, such as by caregivers or physicians, can provide important information about the patient’s health in lieu of self-reported data. However, proxy report comes with several limitations, including being less valid than patient self-report.

Questions and Considerations

A. What patients should complete PROMs?

All patients in the healthcare system

  • Creates a culture of PRO assessment for patients, providers, and staff within a healthcare system
  • In addition to informing individual-level care, can be used to inform research or population health
  • Provides an opportunity to incorporate screening measures (e.g. depression) required to comply with quality reporting programs mandated by payers
  • Allows for a known expected denominator when determining PROM response rates
  • Uniform questionnaire collection across all patients may be easier to implement and require less decision-making for the front desk staff and/or clinical team responsible for collecting PROMs
  • May result in low response rates and high amounts of missing data if patients are not seen at regular intervals
  • May reduce patient and provider engagement if PROs are automatically collected without a clear connection to patient care
  • Could require more modalities of PROM completion to accommodate the diverse needs of all patients across a healthcare system

All patients in a specific clinical setting

  • Creates a culture of routine assessment within the specific setting (e.g. primary care clinic)
  • Allows for the opportunity to collect both generic and specific PROMs relevant to the care setting
  • Allows for a known expected denominator of patients (i.e. all patients in setting) which can be used to consider response rates and better understand missing data

Patients with a defined condition

  • May be straightforward to collect and interpret as many PROMs are developed and validated in condition-specific contexts
  • May have clearer clinical interpretations, including through the availability of predefined benchmarks, anchors, and comparisons to normative population scores
  • Requires consideration of patient burden and redundancy of PROM collection across settings as many patients have multiple conditions; advisable to implement a coordinating PRO system that is accessible to all who provide care to the patient
  • Can pose challenges because not all conditions have well-validated PROMs
  • May benefit from additional reminders to staff and providers to administer and integrate PROs into workflow if PROs are only collected for a specific group of patients

Patients who receive a specific treatment

  • Provides information about patient outcomes following specific procedures or treatments
  • Can be collected at specific timepoints pre- and post-intervention to understand the impact of the intervention
  • Informs whether patients have achieved a clinically meaningful improvement after receiving the treatment, providing actionable information for clinical care
  • Facilitates comparison of health outcomes across different courses or treatments or across different providers
  • May require patient completion of PROMs between healthcare visits
  • May not be well-validated PROMs with clear interpretation

B. What considerations should be made when collecting PROMs from patient proxies?

  • Many patients may not be able to self-complete PROMs or may request support to complete them. This includes pediatric patients and patients with mental/cognitive impairment
  • Proxies can include parents, other caregivers, and physicians
  • Proxy reporters can provide important information in cases where the patient is unable to provide responses themselves
  • Proxy reports may be more valid to assess observable outcomes than unobservable ones (e.g. physical functioning as opposed to pain)
  • Proxies may have a difficult time differentiating their own assessment of the patient’s health from how they think the patient would report
  • Proxy responses may be impacted by their experience caring for the patient
  • There is often limited agreement between child/adolescent and parent proxy report
  • It should be explicitly noted what the proxy’s relationship to the patient is and if the proxy reporter is different at different administrations (e.g. one parent completes a PROM during visit A, another parent completes the PROM during visit B)

Relevant Primary Resources

The information presented here is an overview of identifying patients. For more detailed information please see the following sources:

Background And Citing The Proteus-Practice Guide

Nothing in this Guide should be construed to represent or warrant that persons using this Guide have complied with all applicable laws and regulations. All individuals and organizations using this template have the responsibility for complying with the applicable laws and regulations or regulatory requirements for the relevant jurisdiction.

Each chapter of the Guide lists the key foundational resources that informed its content. To appropriately recognize the foundational resources, we encourage you to cite both the Guide and the relevant foundational resource(s). Recommended citations are provided here.

Suggested Citation

The PROTEUS Guide to Implementing Patient-reported Outcomes in Clinical Practice
A synthesis of resources. Prepared by Crossnohere N, Brundage M, Snyder C, and the Advisory Group, 2023. Available at:

Further Reading

The Guide draws primarily from the foundational resources cited in each chapter. Please click here to find a selection of other relevant references.

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