Identifying Patients: Chapter 4

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)