Outpatient CAR-T Cell Therapy
How Might We educate caregivers such that they feel more confident and prepared to care for their CAR T-cell therapy patient in an outpatient setting?
Skills Used
Project Overview
After interviewing stakeholders involved in various fields aspects of the CAR-T Process, my team and I found an opportunity to partner with the team at Northwestern Memorial Hospital and help them develop their outpatient care program for the CAR-T process. Northwestern Memorial currently only offers treatment in an inpatient setting, meaning patients stay in the hospital for about a week after they receive their treatment. However, they were in the process of developing an outpatient program before COVID-19 hit and the outpatient transformation was put on the back burner.
Therefore, we set out to improve caretaker education for Northwestern Medicine’s CAR-T Program as they begin developing an outpatient treatment process.
User Research
Our research came to find that In most cases the caretaker is an older adult who is typically a close family member of the patient. In most cases this is their spouse, while it can sometimes be an adult child. These caregivers might have limited experience with medical care, placing a great deal of responsibility on these individuals. These caregivers have to be with the patient for 24 hours a day for a minimum of 2 weeks post infusion and continuously be monitoring for any adverse experiences.
We were able to speak with 2 caregivers about their experience gained some really valuable insights into the responsibilities they had, the process of preparing for treatment, and the emotional toll these situations can take on the patients and their family members
Service Blueprint
When looking at the entire in-patient experience through a service blueprint, we realized that there was an exciting opportunity to focus in on the educational touch points. We decided to narrow in on this idea while still paying attention to the how it would exist in the greater operations of administering this therapy. With the added pressure that the caretaker would face in an outpatient setting, we found that this would be an exciting and impactful area to focus on.
From Insight to Prototyping
As a result of our user interviews and frame working, we developed the following three insights and findings about the caretaker education process for the outpatient setting.
There was a clear demonstration that this transition would increase the importance of the caretaker role to a brand new degree. While before, the caretaker could rely more heavily on the hospital staff to monitor for adverse effects following the infusion, the caretaker now was acting as the first individual who would be responsible for recognizing an emergency situation while keeping the patient in a healthy and safe environment.
Next we learned through our conversations with staff responsible for the education of patients and caretakers the importance of catering the education to the different learning styles that everyone may have. The staff recognized that different learning styles exist, and currently, do their best to cater to the personal needs, but there was still a desire for resources that would allow different learners to manage all of this critical information.
Lastly, due to the increased responsibility of the caretaker, it is clear that there needs to be a way to track or assess whether the caretaker is ready to undertake the role or not, and understands the importance and severity of the situation.
In response to these insights and our conversations with the staff, we developed the following solutions for the Northwestern CAR T program to use when shifting to outpatient therapy.
01. Journal
The first solution arose after our interview with one of the caregivers. She is a retired nurse who’s husband received CAR-T treatment, and she often relied on her background as a nurse to help her monitor his physical state, and actually began charting his vital signs and taking notes in a journal she made for herself. She said she found it helpful to keep a consistent routine with tracking his vitals, and that when they needed to go in for an emergency visit she was able to reference it to show doctors what was cause for alarm. This led us to the idea of creating a standardized journal which helps caregivers monitor their patients’ symptoms, and take things day by day, allowing them to think granularly without losing sight of the big picture.
02. How - To Videos
We heard from caregivers and hospital team members alike that videos are a great way to supplement information given to patients. As Northwestern Memorial moves from inpatient to outpatient, we recognize this large need for caregivers to have a variety of resources at their fingertips, as their role in the patients recovery has become crucial in monitoring their safety and wellbeing. Through surveys and interviews, we were able to compile a list of topics we believe would be helpful to create a video for and handed that over to Northwestern Memorial. Here, we created an example video on the topic of journal entries.
03. Checklist
The checklist was brought to life after we found there was a need to ensure that caregivers and patients feel equipped to handle all that comes with CAR-T therapy when given in an outpatient setting. We found that there is not any formal check currently to assess how well caregivers and patients understand what is being asked of them. Thus, we set up this checklist that runs through the important topics covered in educational sessions. Northwestern Memorial team members can check off when a patient or caregiver understand and take notes on the things they need a refresher on. By using this checklist soon after a patient is presented all the information, this gives Northwestern time to go back and talk to them about topics they did not feel solid on, before they get treatment are at home on their own.
04. Updated Workflow
As Northwestern Memorial is working on transitioning this therapy to an outpatient, the staff is developing a comprehensive operations flowchart so that all members of the staff can be on the same page. Since we worked on thoroughly developing the educational aspects, we were tasked with looking at this operations flow and detailing where the different education sessions would live within the entire process, as well as when and where the resources we developed would be used. In order to develop the proper timeline, we ran a stimuli by the social workers and nurse coordinator to gather feedback as to whether the appointments we added were feasible. The image above is a condensed version of the operational workflow that the NMH staff developed with our additions in blue and orange.
Potential Impact and Value Added
Based on our insights and feedback received from the NMH staff on our deliverables, we heard there could be tremendous impact on the comfort and confidence of caregivers in providing them with improved visuals aids and guided worksheets. The more resources that are available to these caregivers means a greater sense of independence and belief that they can handle this responsibility.
For Northwestern Memorial, we believe that these additional educational pieces will lighten the burden of nurses and staff and provide them with a more guided curriculum and means for teaching. Additionally, we hope that our findings will provide the hospital with the confidence they need to transition to outpatient therapy, and reduce the load of inpatient care.