Presenting Results: Chapter 9

Questions and Considerations

A. When should you present the PRO results?

Before a clinic visit

• Allows more time for the responses to be scored, and for the patient/clinical team to review the results and prepare for a discussion
• Requires patient willingness to complete PROMs outside of the clinic, and resources to deploy the PROMs outside of the clinical setting

During a visit

• Provides patients and clinicians with the most up-to-date information
• Alerts clinicians to areas of patient/family caregiver concern, enhances patient-clinician communication, and can clarify priorities for care
• May be difficult to deploy, collect, and analyze the PROM data within the brief period between when the patient enters the clinic and when they are seen by their care team unless an electronic system is used

After a visit

• May be easier to collect PROMs at the time of the visit and score them later; may also be easier to integrate into the clinical workflow
• Does not allow PROM use to inform clinical decision-making at the visit
• Provides no opportunity for patients to discuss PROM results with their care team, which may reduce the usefulness of these results and make them more challenging for the patient to interpret

B. Who receives the PROM results?

Patients

• Patients can use PROMs for monitoring and managing their own health, informing shared decision-making, and empowering them to discuss symptomatic problems with their care team or loved ones
• Returning results to patients promotes transparency and helps patients understand the different pieces of information that a clinical team uses to inform decision-making
• Results should be presented with context and appropriate interpretations to meaningfully inform the patient and prevent confusion

Providers

• PRO data can be treated like other clinical data to inform care, and alert the care team to adverse events
• Historical PRO data can be shown to discuss expected symptom trajectories based on the experiences of past patients (e.g. chemotherapy or surgery discussion)
• PROs can help providers engage patients in symptom and side effect monitoring
• Feedback to providers requires integration into the clinical workflow, including customization to a specific practice
• Personnel other than the doctor (e.g. nurse, other clinical team members) may be better positioned to respond to PRO information

Other audiences

• Administrators may want to receive aggregated PRO results if data will inform quality improvement efforts, or billing and reimbursement
• Payers, public health practitioners, or others might benefit from receiving PRO results to inform reimbursement, research, or population health
• Particular attention to data privacy and security protocols must be in place to uphold confidentiality and protect patients when data collected for clinical care is re-used in non-clinical settings

C. What PRO data from the patient can be presented?

Individual item, sub score, instrument scores

• Depending on PROM scoring guidelines, PROM data presented can include the individual item, the subscale/domain score, and the overall instrument score
• Having the ability to drill down/up allows users to review information at differing levels of granularity

Summary statistics

• A variety of summary statistics can be displayed to provide additional context to the PRO results. These can include descriptive statistics (mean, median, frequency, range), quartiles, and confidence intervals

Transformed, standardized, and normed scoring

• Transformed scores can be obtained by converting the scoring range for the scale
• Normed scores can be obtained by aligning the PROM scale to normative values for a particular population. Normed scoring can be used to compare the results of PROMs with different raw scores
• Data presentation should accommodate instruments as they were developed, be that with or without normed scoring
• Examples include using z-score standardization or t-scores
• Normed scoring may be less relevant when assessing changes within a patient over time
• If a norm is displayed, it is necessary to describe the reference population in the display, and indicate to the patient how this normed score may or may not be applicable to a specific patient

Comparison to reference values

• When data from specific groups are aggregated, they can be used as reference values
• Individual patient’s PRO scores can be compared to many different types of reference values. These include:
  • Reference to public can be used to evaluate the level of patient impairment
  • Reference to a group of people within the same patient panel, with similar demographic or other information
  • Reference to a group of patients with similar clinical experiences such as having the same condition, receiving similar treatment, having undergone the same procedure

Comparison groups/populations

• Individual level scores reflect PRO scores from a particular patient, whereas group or population level scores are aggregated across multiple patients
• Individual level information is useful for patient monitoring and management, as well as screening and other outcomes
• Group or population level scores can be useful for providing reference values against which to compare a patient
• When comparing individual and population scores it is important to consider differences in clinical context (e.g. clinical specialty, inpatient vs. outpatient setting of data collection)

Longitudinal data

• Presenting longitudinal results can help describe trends and inform expectations about a patient’s trajectory
• Time spans and intervals to display can be selected to align with treatments, clinical benchmarks, or office visits
• Longitudinal data can also be used to describe health status pre/post specific interventions
• Change scores describe the difference in PRO scores from one time to another, with an indication of whether the patient’s health is improving, worsening, or staying the same
• Patients value indications of how scores are changing as well as if that change is concerning

D. What are additional desirable functionalities of PRO presentations systems?

• Augment with other information about the patient
• Able to filter data, e.g. for a particular window of time
• Personalize platforms, e.g. providers and patients can customize the display to provide the information most relevant to them or their decision-making process