An e-Health Pain Assessment Tool Incorporating Animations and Images Is Feasible and Useful for Patients in a Ghanaian Sickle Cell Disease Cohort

Background: Pain is the most frequently reported symptom for children and adults with sickle cell disease (SCD), with the highest burden of SCD worldwide being in Sub-Saharan Africa. Without objective markers to identify pain in SCD, pain assessment relies heavily on patient report. Appropriate pain assessment is a critical part of patient satisfaction and creating optimal treatment plans. Pain assessment tools often rely on pain severity as a unidimensional metric. Painimation is a digital tool administered on an electronic tablet that allows patients to describe their pain intensity, location, and quality using animations and graphical images, and shows promise in improving patient communication in many contexts. Currently, there are no data validating this approach in West Africa. Therefore, we sought to assess the feasibility of Painimation as a multidimensional pain assessment tool for SCD patients in Accra, Ghana.

Methods: This cross-sectional feasibility and validity study was conducted at Korle Bu Teaching Hospital in Ghana. Individuals age 10 years old and older diagnosed with SCD were recruited from the Department of Child Health pediatric SCD clinic and the Ghana Institute of Clinical Genetics adult SCD clinic. Participants completed the Painimation digital pain assessment tool which includes a 0-10 visual analog scale (VAS) and a body image to shade to indicate pain location(s). It also includes a choice of up to three out of eight moving animations designed to capture pain quality (e.g. pounding, shooting, stabbing, etc) and the ability to adjust the intensity of each animation. Participants completed a survey of their clinical history and patient reported outcomes. A smaller number of participants sampled from the larger cohort completed additional feasibility testing including timed completion of pain assessments and a 10-question Likert scale questionnaire addressing the feasibility, utility, burden, and acceptability of Painimation as a digital health app for use in SCD.

Results: A total of 217 participants; 57% female; median age of 22 years (range 10-73); genotypes SS (75%), SC (24%), Sβ-Thal+ (0.5%), Sβ-Thal0 (0.9%); were enrolled in the study. Median VAS score was 3.95 (IQR = 0.725, 6.975). The most frequently chosen animations among patients who reported SCD-related pain were cramping (55%), burning (48%), throbbing (47%) and stabbing (26%). The most common pain locations were lower limb (64%), stomach (48%), and arm (42%). Pain intensity scores measured by animation intensity had a strong correlation with VAS scores (Pearson r=0.785).

Within the larger cohort, a total of 38 participants (66% female, median age 16 years (range 10-49) were assessed for additional feasibility endpoints. Among these participants, the median time to complete Painimation was 101.6 seconds. Sixty-six percent (n=23/35) reported using a touchscreen device daily, while a greater number (87%, n=33/38) felt comfortable using a touchscreen device. Among participants, 74% (n=28/38) found Painimation easy to use. Only 39%, (n=15/38) had previously been asked by a clinician to describe their pain quality with words prior to the study. Despite this, most participants (84%, n=32/38) were able to find an abstract animation they felt represented their pain. Many participants expressed that the app was useful for communicating their pain via the shaded body image (92%, n=34/37), animation selection (92%, n=35/38), and animation intensity adjustment (87%, n=33/38). The majority of participants (68%, n=26/38) did not feel that Painimation would be too burdensome to complete during a sickle cell pain crisis.

Conclusions: Painimation demonstrated feasibility as a digital tool with high acceptability and utility in each aspect of the app in this SCD cohort in Ghana. Completion of Painimation did not impose an unacceptable burden on patients. The technological administration of the app in this setting and patient population is feasible. Preliminary validity analysis shows a strong correlation of animation intensity with the visual analog scale. Thus, the Painimation pain assessment app offers the promise of improving patient communication of pain in a West African context using animations and graphical images that may transcend linguistic barriers and the limitations of a unidimensional pain score.

Jonassaint:Expressive Painimation: Current Employment, Current equity holder in private company; Agios: Consultancy, Honoraria.