Jd Jessica Sweeney

Background: Limiting high-intensity exercise is recommended for patients with arrhythmogenic right ventricular cardiomyopathy (ARVC) due to its association with penetrance, arrhythmias, and structural progression. Guidelines recommend shared decision-making (SDM) for exercise level, but there is little evidence regarding its impact. Therefore, we sought to evaluate the extent and implications of SDM for exercise, decisional conflict, and decisional regret in patients with ARVC and at-risk relatives. Methods: Adults diagnosed with ARVC or with positive genetic testing enrolled in the Johns Hopkins ARVC Registry were invited to complete a questionnaire that included exercise history and current exercise, SDM (SDM-Q-9), decisional conflict, and decisional regret. Results: The response rate was 64.8%. Two-thirds of participants (68.0%, n=121) reported clinically significant decisional conflict regarding exercise at diagnosis/genetic testing (DCS [decisional conflict scale]≥25), and half (55.1%, n=98) in the past year. Prevalence of decisional regret was also high with 55.3% (n=99) reporting moderate to severe decisional regret (DRS [decisional regret scale]≥25). The extent of SDM was highly variable ranging from no (0) to perfect (100) SDM (mean, 59.6±25.0). Those diagnosed in adolescence (≤age 21) reported significantly more SDM ( P =0.013). Importantly, SDM was associated with less decisional conflict (ß=−0.66, R ² =0.567, P 2 =0.180, P P =0.56; P =0.34, respectively). Conclusions: SDM is associated with lower decisional conflict and decisional regret; and no difference in postdiagnosis exercise. Our data thus support SDM as the preferred model for exercise discussions for ARVC.

INTRODUCTION Adverse effects are common during treatment of hematological malignancies. Treatment toxicities can impact quality of life [1], impose financial hardship and cause cancer related distress[2]. Symptom monitoring using electronic technology can facilitate early detection of complications[3], reduce symptom burden[4], cost of care[5] and improve survival[6]. Cancer treatment also increases risk of mortality from infections such as coronavirus disease 2019 (COVID-19) and routine screening has been recommended[7]. METHODS We developed an application that periodically delivers toxicity questionnaires to patients during treatment . Based on NCI- PRO-CTCAE™, the questions are delivered through SMS or e-mail. Patient responses crossing prespecified thresholds trigger automated alerts on a dashboard, resulting in additional interventions as needed. Nature and time to intervention is tracked. Patient experience is measured using a Likert-scale and free-text box. Centers for Disease Control recommended COVID-19 screening questions were incorporated. Finally, a distress thermometer for cancer distress screening has been recently added. The app was offered to patients with hematological cancers in a community-based cancer center. RESULTS Since introduction in April 2020, we have enrolled 37 patients. 9 patients had chronic lymphocytic leukemia, 6 diffuse large B cell, 5 mantle cell, 4 Hodgkin's and 3 follicular lymphoma. 2 each had chronic myelogenous, multiple myeloma and Richter's syndrome. 1 each had hairy cell leukemia, acute myelogenous leukemia and T Cell lymphoma. Median age was 64 years (range 24-85). Patient experience has been favorable. On a scale of 1-5, 85.5% rated the experience as 3 or higher. Median patient engagement, calculated by dividing the number of forms completions by number of days enrolled was 34.2% (0.9-66.2 %). Symptom tracker captured 536 responses. Fatigue (153), no symptoms (152), shortness of breath (57), nausea/vomiting, diarrhea (46) and numbness/tingling (28) were the most common response categories. Of 1107 completed check ins, 75 triggered flags. There were 2 hospitalizations for neutropenic fever with the remainder managed as outpatients. Average time between patient generated response and provider intervention was 90.9 minutes. 88% follow-ups were completed within 1 business day. COVID-19 screening module captured 1096 responses. 988 were no symptoms. All positive responses (44 diarrhea, 39 cough, 23 shortness of breath and 2 fever) were false positives. Distress thermometer implemented a week before data cut-off captured 2 responses, 1 in the physical and 1 in the psychological domain. CONCLUSION We demonstrate feasibility of electronic capture of treatment toxicities and offer proof of concept that a mobile app can be used for infection screening. Additionally, the quick response time by care team indicated a high adoption rate. REFERENCES