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Our Journey

Our Journey

Our Journey

Pain is the number one reason people access the healthcare system. Yet, pain remains widely inadequately assessed, which can eventually lead to complications and compromises in quality of care. Self-report scales reduce the complexity to unidimensional statements of pain severity; for example, by asking patients to estimate their pain intensity on a 0 to 10 scale (Figure 1). The 0-10 numeric pain scale continues to be used at almost every medical encounter despite consensus from both patients and providers that scale does little to help patients communicate their pain or inform their medical treatment. The numeric scale is an oversimplification of pain that ignores the dynamic and multifaceted aspects of the pain experience but until recently there were no other good solutions. Since the introduction of the multidimensional pain scale, the McGill Pain Questionnaire (MPQ) in 1970, and the FACES pain scale for pediatric patients in the 1980s, there had been no innovations to how pain was assessed. All scales were reliant on patients using words or a unidimensional numeric scale to describe their pain. And despite advancements in technology, electronic pain scales had essentially been digital copies of traditional paper-pencil measures.

Figure 1

In 2014, Nema Rao, a master’s candidate at the Carnegie Mellon University (CMU) School of Design, wanted to solve the problem of pain communication. For her thesis project, she set out to design a solution that addressed the communication needs of the patient with chronic pain. Specifically, Nema wanted to design a patient-centric pain assessment tool to aid the patient in communicating their pain with a clinician and would ultimately improve our collective understanding of pain and pain management.

Through a human-centered design process involving patients and clinicians (nurses, physicians, and clinical researchers) Nema identified several opportunities for using visual tools to solve the pain communication problem. One of these solutions was the idea of chronic pain patients using abstract animations to express their pain.

Figure 2

Nema met Dr. Charles Jonassaint at the University of Pittsburgh (Pitt) during a meeting of several clinicians and researchers interested in chronic pain. During this meeting, Nema presented her potential solutions for improving pain communication in the medical setting, including the idea of Expressive Animations (Figure 2). Dr. Jonassaint contacted Nema after the meeting and inquired about pursuing the expressive animation concept for an upcoming Pain Research Challenge competition through Pitt’s Communication and Collaboration Technology Integrator (CTSI). Nema agreed to work with Dr. Jonassaint and a team of Pitt and CMU faculty to develop the CTSI pain research challenge application. Since first presenting her ideas to Dr. Jonassaint, Nema had already been feverishly pursuing the expressive animation concept working to answer the most critical question of the project, “what were these pain animations going to look like?”

Indeed, this was a crucial question. It was important that these animations were abstract (rather than literal) because abstract animations remove barriers of age, culture, language, and literacy level in pain assessment. Furthermore, abstract animations allow users to freely interpret them, providing users an opportunity to truly express their pain. Constraining animations (e.g. hammer over the head) would likely exclude many pain experiences.

To create these abstract animations, Nema began by evaluating the words used to describe qualities of pain on the McGill Pain Questionnaire Short Form. After clustering similar words, she focused on “throbbing,” “shooting,” and “cramping,” given that these were different enough to create an initial set of animations. Next, she considered the visual variables that would represent the intensity change of the pain depicted, which included speed, saturation, focus, and size (Figure 3). She surveyed these animations and found that participants were satisfied and comfortable with them to represent a sensation.

Figure 3

The next step was to add a range of intensities and descriptors missing in the initial set of animations. To accomplish this, Nema asked a group of design students to draw pain on a spectrum (Figure 4). The purpose was to determine whether individuals were able to distinguish and represent the differences between pain intensity in their drawings. Participants were asked to draw words like “stabbing,” “pounding,” and “shooting,” and asked to draw a low-, medium-, and high-intensity version for each word. Using these initial concepts, Nema was able to identify characteristics of each pain adjective that were drawn similarly across students but also, the features that made each pain adjective distinct from others.

Figure 4

These investigations helped inform the total set of animations created. The full set included the original five (tingling, throbbing, cramping, shooting, pounding) as well as three new ones to address the tools ability to detect neuropathic pain (electrifying, stabbing, and burning), all with varying intensities (Figure 5). It should be noted that these pain adjectives/words (e.g., cramping) were only used as a guide for development to ensure that the painimations captured a full range of pain experiences. The painimations are meant to be abstract and allow the user to place their own labels or meanings on the animations and what they represent, thus, the pain words are never shown to the user.

Figure 5

For the CTSI application, Nema and Dr. Jonassaint proposed an iPad app that could be tested in the pain medicine clinic headed by Dr. Ajay Wasan. The initial animations along with a design concept of the app were included in the CTSI pain application. But the app still needed a name to make the proposal attractive to reviewers. So Nema and Dr. Jonassaint decided to call the app Painimation. The application was eventually awarded $25k to build and test the iPad version of Painimation.

The Painimation prototype was tested in Dr. Wasan’s pain medicine clinic with 200 chronic pain patients and showed that patients were able to use the pain animations, or “painimations,” to report their pain. In fact, 80.2% of patients agreed or strongly agreed that they would use Painimation to communicate with their providers. Furthermore, the type of animation chosen correlated with their pain type and other traditional style pain measures, such as the McGill Pain Questionnaire. Moreover, selection of the electrifying animation was associated with self-reported neuropathic pain (r=.16, P=.03).

More importantly, patients felt like the animations captured their pain experience, which made them feel heard and understood. “This is the first time I’ve been able to describe to someone what my pain feels like,” said one patient who had had shingles for the past 10 years. Further, patients felt that Painimation would be an important tool for sharing their pain experience with their medical providers. And although Painimation may one day become a diagnostic tool that helps providers more accurately diagnose and treat their patients’ pain symptoms, or other potential medical applications, the driving purpose behind Painimation is still to improve our empathy and understanding for individuals living with pain, the original problem Nema wanted to solve when she first conceived the idea of Painimation during her days as a graduate student.

Collaborators

Collaborators

Collaborators