Patient Disease Surveys: Turning Giants Into Windmills
Disease surveys in clinical settings have substantial benefits, but their use has been limited by a number of practical challenges. This article examines these challenges and presents solution characteristics that address these concerns. Example solutions are provided using the DISCOVER seizure survey (Epilepsy Study Group).
Turning Giants into Windmills
In the classic novel, Don Quixote fights what he believes to be giants, but turns out to be just windmills. Clearly seeing the disease you are fighting is key to knowing the best treatment and it starts with an accurate diagnosis. Getting the diagnosis right often requires patients to provide an accurate and complete symptom history. Unfortunately, many factors can interfere with the patient’s attempts to convey this information to healthcare providers. The following are some of the main factors:
Symptom Breadth and Depth
The range and delineation needed between symptoms can be extensive.
Patients may not know which symptoms are important to describe.
Limited cognitive functioning (e.g., Attention, Comprehension, Verbal skills, Memory) can impair symptom reports.
Patients are sometimes not aware of all their symptoms (e.g., dementia, seizure characteristics, denial, etc.).
Patients may mis-attribute a symptom to a cause (e.g., "that pain is from when I fell years ago")
The more factors present the greater the risk of symptom reporting interference, highlighting the need for tools to help with the process.
Just as Sancho provided practical insights throughout Don Quixote’s misguided adventures, disease surveys provide a guide for patients to describe and characterize their symptoms. The diagnostic strength of these tools is the expert-lead design and validation, and structured assessment of all relevant symptoms. Moreover, disease surveys can be designed to address symptom interference factors, such as incorporating symptom reports from observers among patients who may have limited insight (e.g., observer report of seizure characteristics). The diagnostic utility of disease surveys has been well established in many medical populations.
Despite their widespread use and utility in research, the adoption of disease surveys in clinical setting has been limited. Thus, before dubbing disease surveys into knighthood, it is important to examine and address why their use is not more widespread.
Don Quixote’s missteps in day-to-day events were often the result of clinging to knighthood ideals. Similarly, disease survey development often focuses theory driven ideals which often results in applied limitations in their use. That is, expert lead development ensures the theoretical underpinnings are solid. However, little or no attention is given to the practical mechanics of getting patients to complete the survey and getting healthcare staff to use the results in day-to-day operations and decision making.
To get a sense of the challenges that limit adoption, consider the snippet from an example survey below. The DISCOVER survey is a well-designed and validated seizure assessment tool (the Epilepsy Study Consortium; website) that incorporates symptom reporting from both the patient and an observer.
Noting that the above is only one part of the DISCOVER survey and that an observer completes similar items, it is straightforward to appreciate the following practical challenges in its use within a clinical setting:
The goal is to have a completed survey by the clinic visit appointment time. The following are some of the main challenges interfering with this goal:
Monitor and ensure the paper-and-pencil survey gets to the patient and observer (e.g., mailed, handed to patient at clinic, etc.), is completed, and is brought into the clinic.
Disease surveys vary considerably in length. The completion burden falls squarely on the shoulders of the patient and observer. Thus, there is a difficult balance between having enough items for the results to have sufficient utility, and actual completion rates and quality of data.
The patient receives little or no benefit for completing the survey beyond helping the healthcare provider with their case.
At best patients have healthcare staff nearby for questions, but more often getting answers to questions involves a protracted process using various communication channels (e.g., email, phone, text).
The goal is to deliver survey results to healthcare providers before stepping into the patient room. The following are some of the main challenges:
Monitor and ensure the surveys are scored (if applicable) and delivered to the appropriate clinical staff.
Simply handing clinical staff completed surveys does little to facilitate the accurate and efficient understanding of the results. Some surveys leverage built in aggregation methods (e.g., a depression scale total score), making results easier to summarize using traditional methods (e.g., charts and graphs). However, aggregation methods do NOT make sense for many disease surveys since each item has autonomous significance. In such cases it is easy to appreciate why many providers revert to using their own internalized, custom approach to assessing patient symptoms when faced with the daunting, often time consuming, task of digesting a completed text-based survey.
Disease surveys have numerous benefits and potential upsides, so it is important the above challenges are addressed to encourage increased adoption. It starts with having a vision for how things should work.
The Noble Knight
Don Quixote strove to act as a noble knight in all his adventures. The process of addressing the challenges of disease surveys also needs to strive toward a 'noble’ aim that speaks to larger, health-related data management systems. The noble aim for disease survey has two major players:
Engage and retain patients in the data capture process
Leverage data to provide patients with informative, personalized and actionable information.
Facilitate an efficient and accurate understanding of results
Generate data-driven, insight-oriented decision-making information applicable to treatment and clinical care.
Although there are many components and continued refinement needed, some of the main characteristics of this noble aim regarding disease surveys are described below and practical examples given using the DISCOVER survey.
Switching from paper-and-pencil to a web-based, electronic format has multiple benefits:
Lower barriers to access (e.g., can be completed from home).
Immediate data entry validation, feedback and item explanations.
Multi-device capability (e.g., phone, tablet, PC).
Survey declutter (e.g., show pain location question only if ‘Have pain’ endorsed).
Guided Data Entry
The electronic interface should guide patients through survey completion. Some examples include (see images):
An easily identifiable, single-click button to start the survey.
Visual cues that indicate progress.
Self-paced, stop any time, automatic navigation to where left off upon return
Standard survey design uses a text-heavy, item-by-item format which works sufficiently well and often there are little or no alternatives. However, disease surveys items often have a physical target (e.g., bleeding tongue, swollen feet), creating an opportunity to incorporate visual aids (e.g., icons, pictures, videos). This often makes data entry more pleasant, faster, easier and may help lower the required reading level. Moreover, pairing items with visuals can help declutter reports (e.g., item text not needed in report; see ‘Report’ section below).
As an example, note the utility of using even simple icons in the items below (see image).
The use of incentives for survey completion is a powerful mechanism to engage and retain patients and increase data capture rates. There are a number of ways to implement incentives. As one example, a system where points can be earned for completing a survey which, in turn, can be exchanged for preferred incentives (e.g., gift cards, tickets to local events, disease-related event discounts, parking validation, etc.) (see image).
Patients completing disease surveys often have questions about items. There should be a secure, fast way to ask questions and receive answers. A messaging system addresses this need well (see image).
One of the main reasons disease surveys have seen limited adoption within clinical settings is the cumbersome, often delayed, process of receiving and consuming the results. Connecting the electronic data to reporting tools offers an exciting opportunity to directly address this concern. However, simply using a row-by-row, item / response layout has little value over a paper-based approach. Instead, reports need to creatively integrate decision logic, color, spatial relationships, charts, graphs, etc. with the aim of making it easy for healthcare providers to quickly and accurately consume the information (learn more about report display techniques here).
Patients too should have report access to make it easy to verify responses. Moreover, the report content should be personalized with disease and educational materials (e.g., videos, podcasts, etc.) based on their symptom response data.
As an example, the table below displays the responses to multiple items on the DISCOVER survey, by both the patient and observer of seizures. The combination of color and icons makes it easy to determine problem areas. In this case, green indicates NO problems, yellow means there are SOMETIMES problems, and light red indicators ALWAYS problems.
In summary, addressing the practical limitations associated with using disease surveys will help encourage their adoption across clinical settings resulting in more patients and healthcare providers benefiting from their use.