Display most useful statistical presentation

Data & Information

PRO data is typically collected from patients in the form of a survey/questionnaire. Patient responses are usually a choice of pre-defined options made in response to an item (e.g., a question stem where someone responds to the level of agreement or experience, such as pain level) or a quantitative response to a question (e.g., how many times per week a symptom is experienced). To provide meaning, these “raw” PRO survey responses must be summarized, organized, and analyzed to usefully derive information. The specific ePRO content derived from PRO survey raw data can be represented in various forms (e.g., raw score, standardized score). ePROs should be presented in an effective form that fits the context of use; otherwise, understanding and comprehension could be compromised.

Strategy A

Represent PRO data in ePRO reports in ways that enhance accurate interpretation and efficient comprehension for specific contexts of clinical care

There are many ways to represent PRO data to appropriately reflect what is needed to support clinical use. In deciding how to represent PRO data in ePRO reports designed to support the clinical care process, designers should consider:

the significance of the ePRO data to the clinical decision-making process within the domain of care
the ways the ePRO report may be used within the care context
what must be done to augment an understanding of the ePRO data (see Contextualize Data guideline and Enhance Key Information guideline for additional information about supplementing ePRO data)

These considerations should guide the selection of the most appropriate forms to represent PRO data in ePRO reports.

Table 4A provides a list of options for representing PRO data along with considerations for aligning ePRO reports with clinical context and provider usability.

Table 4A: Checklist for selecting how to represent PROM values
ePRO Representation Options	Key Considerations to Match Representations to the Clinical Context
Individual item, subscore, and instrument score	Does the clinical context call for… The overall PROM score Individual item scores
Unmanipulated scores (raw scores and weighted scores)	Does the clinical context call for… Unmanipulated/raw PROM scores (generally, raw PROM scores are obtained by summing responses for items). Weighted scores (obtained by proportionally weighting individual items (or a domain/group of items) in the summation process).
Transformed, standardized, and norm-based score (z-score standardization; t-score)	Does the clinical context call for… Transformed scores, which are PROM scores obtained by converting the scoring range for the scale (e.g., z-scores). PROM scores may be transformed so that high scores define a favorable health state for all relevant scores. Norm-based scores, which are PROM scores that align the scale to normative values for a given population. Standardized and norm-based scores may allow the results of one PROM to be meaningfully compared with the results of other PROMs with differing raw scales.
Designate baseline	Would it be useful to also include… Baseline scores (to orient the provider in understanding patient progress)
Descriptive statistics	Would it be useful to also include… Mean Median Frequency Range
Quartiles	Would it be useful to also include… Quartiles to illustrate symptom intensity
Confidence intervals	Would it be useful to also include… Confidence intervals and p-values to discern significance
Show differences in patient outcomes using unmanipulated (raw) scores or changes in score	Is it important to… Show changes in PROM scores over time reported as raw scores Show changes in PROM scores over time reported as the incremental change in score

Some of the prevailing challenges for operationalizing the strategy are listed below, along with tactics to consider in addressing these challenges:

Challenges and Tactics Statistical Presentation

Challenges

Indicating scale direction: PRO scales differ in whether a high score indicates a “favorable” health status.
“Good or bad” change: How do we qualify change in score as positive or negative?
Provider understanding: Some providers may not be familiar with the PROs available and how they are scored.
Patient understanding: Raw numerical PRO scores may be difficult for patients to understand.

Tactics

Provide additional means to contextualize PRO scores.
Augment raw PRO scores with baseline or medically important difference benchmarks.
Provide mouse over (hover) text with additional information to explain PRO data.
Use simple, graphical representations.

For additional insight on how to select and display ePRO statistics, see the Resources related to: