Introduction: Adults living with sickle cell disease (SCD) most frequently seek medical care due to pain. To determine the most efficacious treatment plan for patients presenting with pain, providers must first accurately assess and diagnose the pain. Unfortunately, the current approaches for assessing pain are inadequate. Combined with medical provider biases, patients can often have their pain symptoms misinterpreted, ignored, or blatantly dismissed. To address this issue, we partnered with stakeholders, human-centered designers, and software engineers to design a novel pain assessment tool, called Painimation. Painimation allows patients to communicate their pain quality, intensity, and location using abstract animations and a paintable body image. Painimation has been validated in a general population with chronic pain, but there is limited data validating this approach in SCD. Preliminary data on the use of Painimation by adults with SCD (N = 67) found that those who described their pain using the “throbbing” animation had less severe pain symptoms than those endorsing the “shooting” animation.

Objective: To replicate and extend prior findings by determining whether pain animations and body image data are associated with pain outcomes in a large cohort of adults with SCD. We hypothesized that the presence of shooting pain and greater body surface areas affected by pain would be associated with more severe pain outcomes and mental health symptoms.

Methods: We performed a secondary analysis on baseline data from the “Cognitive Behavioral Therapy and Real-Time Pain Management Intervention for Sickle Cell via Mobile Application (CaRISMA)” Trial-a multisite randomized, controlled trial in adults with SCD and chronic pain. Eligible patients were randomized 1:1 to either digital cognitive behavioral therapy or digital education; in addition, both arms received at least 12 weeks of health coach support. At baseline, participants completed a battery of questionnaires and tracked their pain intensity (0-10) by the Visual Analog Scale (VAS) and mood daily via a mobile app. The Painimation app presents a front and back 2-dimensional body image that is paintable to indicate areas affected by pain. Users choose from abstract animations intended to represent different pain qualities; the intensity of the animations can be adjusted, and up to three can be selected. For the purpose of the analyses, participants were categorized into “Shooting Pain” vs “No Shooting Pain” and “Throbbing with Shooting and Stabbing” vs “Throbbing Alone,” based on our prior study. Participants were also split into groups based on whether the proportion of the body image painted was less than the median (<9.8% vs >=9.8%). Baseline characteristics and demographics were compared between groups, and multivariable regressions were used to estimate covariate-adjusted associations with the following outcomes at baseline: daily pain, Patient Reported Outcomes Measurement Information System (PROMIS) pain interference scale, Pain Catastrophizing Scale (PCS), Current Opioid Misuse Measure (COMM-9), and Adults Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) pain severity and frequency.

Results: The trial enrolled 359 adults, mean age 36.3 (SD = 10.5), 66% female, 93% Black race. The “Shooting” painimation and greater body image scores were associated with all outcomes in univariate analyses (all p<0.01; Table 1) except for the proportion of “happy” mood days and anxiety scores. After controlling for age, depression, anxiety, % body image, and site, the shooting animations were independently associated with greater daily pain intensity (beta = 0.64; p = 0.046). After controlling for age, depression, and site, greater body image score was associated with daily pain intensity (beta = 1.18; p < 0.001), pain interference (beta = 2.87; p < 0.001), ASCQ-Me pain frequency (beta = 3.91; p =< 0.005), and ASCQ-Me pain severity (beta = 4.50; p = 0.002).

Conclusion: Both the “shooting” animation and body image measures were associated with more severe pain outcomes. This study demonstrates that animations and body image data can be used to assess pain severity in SCD, more objectively than the 0-10 numeric VAS scale. Future studies should explore whether pain location and specific animation selected are associated with pain etiology, and determine whether this approach can differentiate different types of pain in SCD.

O'Brien:Johnson & Johnson: Current equity holder in publicly-traded company; Lilly Eli & Co: Current equity holder in publicly-traded company; Pfizer: Current equity holder in publicly-traded company; 3M Co.: Current equity holder in publicly-traded company; Embecta: Current equity holder in publicly-traded company; Colgate-Palmolive: Current equity holder in publicly-traded company; Becton Dickinson: Current equity holder in publicly-traded company; Ashland Inc: Current equity holder in publicly-traded company; AbbVie Inc: Current equity holder in publicly-traded company. Jonassaint:Expressive Painimation: Current Employment, Current equity holder in private company; Agios: Consultancy, Honoraria. Badawy:Bluebird bio, INC: Consultancy; Chiesi, Inc: Consultancy; Vertex Pharmaceuticals Inc: Consultancy; Editas Medicine: Consultancy; Bristol-Myers Squibb: Consultancy; Forma Therapeutics/Novo Nordisk: Consultancy; GBT/Pfizer: Consultancy. Saraf:BEAM Therapeutics: Consultancy, Other: Advisory board; Novartis: Consultancy, Other: Advisory board, Research Funding; GBT/Pfizer: Consultancy, Other: Advisory board, Research Funding, Speakers Bureau; Forma Therapeutics: Consultancy, Other: Advisory board, Research Funding; Agios: Consultancy, Other: Advisory board. Gordeuk:Emmaus: Consultancy, Research Funding; GBT/Pfizer: Consultancy, Research Funding; Takeda: Consultancy; CSL-Behring: Consultancy; Novartis: Research Funding; Incyte: Research Funding; Forma: Consultancy, Research Funding; Modus Therapeutics: Consultancy. Shah:Agios Pharmaceuticals: Consultancy; Global Blood Therapeutics/Pfizer: Consultancy, Research Funding, Speakers Bureau; Alexion Pharmaceuticals: Speakers Bureau; Vertex: Consultancy; Bluebird bio: Consultancy; Forma: Consultancy. Lanzkron:Teva Pharmaceutical Industries: Current equity holder in publicly-traded company; Imara/Enliven Therapeutics: Research Funding; Magenta: Consultancy; Novo Nordisk: Consultancy; Pfizer: Consultancy; HRSA: Research Funding; PCORI: Research Funding; Bluebird Bio: Consultancy; CSL-Behring: Research Funding; Global Blood Therapeutics: Research Funding; Takeda: Research Funding; National Alliance for Sickle Cell Centers: Other: Vice president ; Novartis: Consultancy, Research Funding. Liles:Alpine Immune Sciences: Other: Clinical trial activity (Principal investigator or sub-investigator); Annexon Biosciences: Other: Clinical trial activity (Principal investigator or sub-investigator); Abbvie: Other: Clinical trial activity (Principal investigator or sub-investigator); Astex Pharmaceuticals: Other: Clinical trial activity (Principal investigator or sub-investigator); Baxalta: Other: Clinical trial activity (Principal investigator or sub-investigator); BeiGene: Other: Clinical trial activity (Principal investigator or sub-investigator); Bioverativ: Other: Clinical trial activity (Principal investigator or sub-investigator); CSL Behring: Other: Clinical trial activity (Principal investigator or sub-investigator); Celgene: Other: Clinical trial activity (Principal investigator or sub-investigator); Delta-Fly Pharma: Other: Clinical trial activity (Principal investigator or sub-investigator); Exact Sciences: Other: Clinical trial activity (Principal investigator or sub-investigator); Forma Therapeutics: Other: Clinical trial activity (Principal investigator or sub-investigator); Global Blood Therapeutics: Other: Clinical trial activity (Principal investigator or sub-investigator); Immunovant: Other: Clinical trial activity (Principal investigator or sub-investigator); Incyte: Other: Clinical trial activity (Principal investigator or sub-investigator); Janssen Pharmaceuticals: Other: Clinical trial activity (Principal investigator or sub-investigator); NeoImmuneTech: Other: Clinical trial activity (Principal investigator or sub-investigator); Novartis: Other: Clinical trial activity (Principal investigator or sub-investigator); Novo Nordisk: Other: Clinical trial activity (Principal investigator or sub-investigator); Partner Therapeutics: Other: Clinical trial activity (Principal investigator or sub-investigator); Pharm-Olam: Other: Clinical trial activity (Principal investigator or sub-investigator); Principia Biopharma: Other: Clinical trial activity (Principal investigator or sub-investigator); Salix Pharmaceuticals: Other: Clinical trial activity (Principal investigator or sub-investigator); Sanofi-Aventis: Other: Clinical trial activity (Principal investigator or sub-investigator); Takeda: Other: Clinical trial activity (Principal investigator or sub-investigator); Vifor Pharma: Other: Clinical trial activity (Principal investigator or sub-investigator). DeBaun:FORMA: Consultancy; Vertex/CRISPR: Membership on an entity's Board of Directors or advisory committees; Novartis Pharmaceuticals Corporation: Other: Study steering committee member; Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees, Research Funding. Trimnell:Agios Pharmaceuticals: Consultancy; Novo Nordisk: Consultancy; Pfizer: Consultancy, Honoraria; Bluebird bio: Honoraria; Graphite Bio: Consultancy; Novartis: Consultancy; Vertex: Honoraria. Decastro:Forma Therapeutics: Other: Advisory board; Global Blood Therapeutics: Other: Advisory board; GlycoMimetics: Other: Advisory board; Novartis: Other: Advisory board.

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2023
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