Automated Texting Support Intervention for Sickle Cell Patients

SickleStrong Network: An Automated Texting Support Intervention to Connect Transitioning SC Patients to Helpful Peers, Providers, and better ER Pain Crisis Treatment Drew Walker, MS, CHES Vaughan Coder, BS, CS

SickleStrong Network Primary Aims Aim 1: To allow Sickle Cell patients, ages 13-29, to update their hematology teams through text, prompting an automated Pain Crisis ER Plan note signed by their hematologist to be sent to hospital static Attending ER number for identified hospital site, and alert program Community Health Workers. The goal of this is to provide an accountability framework to help ensure that patients are given the standard of care for pain crises of administering pain meds within 30 minutes and should be treated in ER as Emergency Severity Index of 2. 1 Aim 2: Connect patients in need of socioemotional support during crises to other individuals with Sickle Cell trained in compassion-based peer support and community mobilization strategies. Aim 3: Recruit, train, and develop volunteer teams of SickleStrong Guardians patients living with Sickle Cell who are interested in providing socioemotional support to other patients during crises, with additional community mobilization strategies and activities

Aim1: Reducing the time spent in the ER before treatment= preventing severe pain crises complications, and reducing patient burden to advocate, educate, and communicate needs to ER team during pain crisis. Areas of Impact: Aims 2 and 3: Facilitating ongoing peer support (roles in both giving and receiving support) that encourage resilience and altruism, as well as ways to for patients to engage with community action committees guided by the Natural Helper Model and Community Coalition Action Theory

Staff Component of Intervention SickleStrong Network Community Health Workers: 2-3 1.0 FTE positions, recruited at Sickle Cell Clinics, regional community forums, traditional job posting sites, seeking individuals with sickle cell experience, or who are Black or African American. Research Partnerships PI and GRA support to assist with launch, implementation, feasibility, evaluation studies as well as technical support.

SickleStrong Network Community Health Workers SickleStrong Network is facilitated by Community Health Workers-- a strategy that has been very successful in improving multiple health related quality of life outcomes for SCD and many other chronic diseases.2 who collaborate with inpatient and clinic hematologists, social workers, Child Life Specialists, and nursing teams to identify transitioning patients on inpatient admissions or clinic visits. We propose recruiting CHWs with sickle cell, experience with sickle cell, or who are Black or African-American. The CHW s roles will be broken up into Patient/Clinical Responsibilities Community Health Worker Responsibilities 1. CHWs recruit patients during in-patient hospital admissions and outpatient Sickle Cell patients. CHWs discuss patient interest in participating in peer support aspect of the program and educate patients on the process of using the texting line. 1. CHWs then work with patients, hematologists and social workers to develop Sickle Cell plans and save Pain Crisis ER Care Plan on our HIPAA-compliant Salesforce platform to be to ER attending lines at participating hospitals. 1. CHWs recruit and train patients to provide virtual social support and education in role of SickleStrong Guardians in education on sickle cell disease and management, as well as social support and community mobilization strategies Facilitate evaluation studies on program with research collaborators, act as gatekeeper/primary patient recruiter Assess feedback from data detailing Sickle Cell ER experiences for different hospitals, allowing for rapid identification of ERs with poor SC outcomes, and opportunities for local staff education. Lead community mobilization efforts with SickleStrong Guardians action meetings 2. 3. 4.

Research Partnerships PI/GRA Team Work with CHW and Sickle Strong Community Coalition Facilitate evaluation studies on program with research collaborators, act as gatekeeper/primary patient recruiter Work with CHW to Assess feedback from data detailing Sickle Cell ER experiences for different hospitals, allowing for rapid identification of ERs with poor SC outcomes, and opportunities for local staff education. Lead community mobilization efforts with SickleStrong Guardians action meetings

My Pain Crisis ER Care Plan: Setting up with Hematologist Meeting with patient and hematologist or Social Worker to fill out RedCap form describing patient s Home dosage of pain medications Typical ER-level pain control strategy as recommended by hematologist, as an at- minimum standard of care Also reinforces process with patient that physician is signing off on this automated service Pilot testing will rely on being at a site where we have strong physician buy-in to champion the program to other providers, especially ER staff.

Patient Texts to 54447 Emergency Department and Hospital Staff #SickleStrong Twilio Server #SickleStrong RedCap server Authenticates patient is enrolled in system, used to store data from patient utilization of the service Server Initial Contact ER Shift Attending Phone Number awaiting Text Response #SickleStrong Provide Name/DOB Easiest method? Patient Authenticatio n step? Framework for storing patient data, e- consent forms, and survey responses Network of Participating SickleStrong Hematologists "Hi <Preferred Name>, Thanks for contacting #SickleStrong. Please reply with the number that applies to your situation so we can know how to best help you. If you'd like to start the menu over, just text #SickleStrong to 54447 again. Main Menu Sent to patient 1) 2) I'm in the ER. I want to talk with another Sickle Cell Warrior to help me get through this. I want to learn about joining the SickleStrong Network to help other SCWarriors. SC Social Workers 3) 1 SC ChildLife Specialists 2 3 Patient Responses Patients directed to intervention AIM 1, 2, 3, or rerouted through menu with explanation of error/ choices Invalid Entries

AIM1: /Response 1: Im in the ER Patient Texts to 54447 Emergency Department and Hospital Staff #SickleStrong Twilio Server #SickleStrong Salesforce server 1 Authenticates patient is enrolled in system, used to store data from patient utilization of the service Server awaiting Text Response Where is patient? How is patient doing? Which ER will the app contact? Framework for storing patient data, e- consent forms, and survey responses Prompted Code Run: ER identified ER Shift Attending Phone Number Read Patient Responses, Confirm identity w/Salesforce Drafts message signed with contact info of Patient Hematologist Report Pain Level Patient Responses Find ER attending number from Salesforce Lists/ API constructed by Social Worker Time you arrived to ER

Example from Aim 1: ER messaging sequence

Aims 2 & 3 : Aim 2: Interest and consent to share number in effort to be connected with other patients can be assessed through automated texting sequence that can be forwarded to CHWs whenever patients choose, from main SickleStrong Network menu. Aim 3: Interest in volunteering in SickleStrong Guardian mentor role and completing required educational materials, understanding of flexible virtual volunteering commitment can be assessed via automated texting sequence that can be forwarded to CHWs . After either/both responses are received for patients interested in Aims 2/3, CHWs will be prompted to follow up with patients to connect or plan for education/volunteering orientation during normal work hours

SickleStrong Guardians Role Patients interested in Aim 3: in being trained as a volunteer to support other patients through virtual texting pairing that is facilitated through CHW Volunteers will undergo orientation, on topics of Sickle cell disease management Social support and coping Reflective listening strategies Community mobilization strategies Volunteers can participate in regularly occurring SickleStrong Action Coalition framed in Natural Helper Model3and Community Coalition Action Theory 3to collaborate with fellow patients, SCD providers, community organization leaders to decide and act on SCD related advocacy, research, or policy initiatives of interest to community framed Many AYA Sickle Cell patients report being able to seek support from and support others with sickle cell as being key factors in their ability to cope with the disease. 4

Process Evaluation Data collected from Salesforce Platform: Timepoints, can map to areas of where there is a breakdown in ER wait times Location specific-- patient indicates hospital from list of local hospitals at pilot site Process outcomes Timeliness Are ERs receiving the messages? Are staff acting on the messages? Hematologist, and Social Worker use/experience with SickleStrong Network Patient Pretest, baseline at study enroll recounts last ER visit wait time Can calculate each time patient uses the app can also do control studies to see if time is reduced Ability to pilot test communication strategies that work for each individual ER potential to integrate with EMR

Potential Outcome & Impact Evaluations Automated texting framework provides ease of sending survey data or recruiting for any evaluation studies Can rely on texting data on ER admissions, sending follow-up surveys and adapt survey capabilities to fit patient technology access (i.e. can be completed all by phone, not necessary to connect to internet or need computer, helpful while in hospital or in areas without access to wifi Measurements ER Wait times, time to triage, time to treat Patient Hospital Experience Scales Social Support measures from community engagement Program utilization metrics as documented within Salesforce API Measuring patient/physician/healthcare team trust Measuring distal QoL outcomes for Sickle Cell patients (LOS, pain levels)

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