Going Back to Work after Transplant: How Can Your Medical Team Support You? 

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Going Back to Work after Transplant: How Can Your Medical Team Support You?

Tuesday, May 2, 2023

Presenter: Rachel Salit, MD, Fred Hutchinson Cancer Center

The presentation is 55 minutes long, followed by 20 minutes of Q & A.

Summary: Few transplant centers currently have guidelines and support programs to help patients return to work after a stem cell transplant.  New return-to-work guidelines and tools have been developed by transplant and other medical specialists help patients return to work after a stem cell transplant.

Highlights:

• 40% of cancer survivors return to work at six months and 70% at one year, but blood cancer survivors are ten times more likely to quit work for cancer-related reasons.
• Only 51% of stem transplant survivors are employed at three years after transplant.
• New Return to Work Guidelines have been developed for transplant teams to use to better with patients to prepare them for return to work, understand potential medical and other obstacles, and involve employers in developing a realistic back-to-work plan.

Key Points:

(04:00): Cancer survivors want to return to work and see employment as a measure of self-worth, competence, independence, and contribution to society.

(05:56): Returning to work after a stem cell transplant can be difficult due to prolonged use of immune suppression drugs, graft-versus-host disease, and long periods of time out of work and on disability.

(11:19): 1,000 transplant survivors surveyed said that more advance knowledge about post-transplant complications, disability benefits, realistic back-to-work goals, and support from physical therapists would help return to work efforts.

(16:36): A team of physicians, a social worker, an occupational and physical therapist, an infectious disease specialist and a behavioral psychologist developed Return to Work Guidance Committee Recommendations that transplant teams can use to help patients develop a realistic return to work plan.  

(15:50): Online resources that can help patients understand their legal rights about returning to work include the Americans with Disabilities Act (ADA), Family Medical Leave Act (FMLA), Triage Cancer, and Cancer and Careers.

(20:29): When re-evaluating work goals post-transplant, patients should consider what they would do their time if money was not a concern, whether they want to return to their previous job, concerns about doing the same work, and what assistance they may need.

(22:38): Ongoing communication between healthcare providers and the employer about what's happening with the patient during and after treatment can ease a patient’s return to work.

(33:03): There’s no data that says all patients need to wait a year before returning to work.

(34:14): While you are on disability and planning to return to work, patients should ask their  transplant team for referrals to  psychology, physical therapy, and vocational rehab experts, if needed, to help prepare for return to work.

Transcript of Presentation:

(00:01): [Marla O’Keefe]: Good afternoon. My name is [Marla O’Keefe]: and I will be your moderator for this workshop.

It is my pleasure to introduce today's speaker, Dr. Rachel Salit. Dr. Salit is an associate professor at the Fred Hutchinson Cancer Center and at the University of Washington in the Department of Medicine, Division of Oncology, where she is a bone marrow stem cell transplant physician and researcher. As a clinician in the long-term follow-up program, Dr. Salit is invested in helping survivors return to normalcy and achieve a quality of life after transplant. Her research focuses on improving survivors' return-to-work process. Please join me in welcoming Dr. Salit.

(00:48): [Dr. Rachel Salit]: Hello, everybody out there. I'm Rachel Salit, and I would like to thank BMT InfoNet for inviting me to present today.

I look forward to any questions you have after the presentation regarding how returning to work after a transplant is a realistic option for you.

(01:12): Our learning objectives today include:

• Understanding how everyday return-to-work struggles are after following a stem cell transplant.
• We are learning about some of the research efforts we've been putting toward educating the transplant community on return-to-work barriers and supports.
• We are becoming familiar with the newly approved return-to-work guidance and the return-to-work planning tool.
• We are gaining confidence that you can work with your medical team and employer to get the assistance you need to succeed at work.

(01:45): I'm looking back on a few patients I treated over the past year. Maybe you can relate to their stories.

• One was a young woman studying occupational therapy, who I saw for a pre-transplant consultation.
• Another was a painter who believes his work caused his cancer and is now interested in retraining for a career in technology.
• I saw an electrician during his transplant period who returned for a follow-up visit with complaints of neuropathy. He's now afraid to climb ladders, which is a major obstacle for him to perform his job.
• At a three-year post-transplant visit, I visited with a government contractor who had been out of work twice due to her lung graft-versus-host disease but had the fortunate experience of having an employer who allowed her to work 30 hours a week from home.
• At a five-year post-transplant visit, I visited with a traveling consultant who hadn't regained the energy to resume her weekly travel, thus impairing her ability to do her previous job.

(03:08): We'll first address how everyday return-to-work struggles are in stem cell transplant survivors. This is what initially motivated me to start doing this work. While working in the long-term follow-up clinic, I saw many patients who weren't receiving the support they needed to return to work after the transplant.

(03:29): More than 15 million cancer survivors are alive in the U.S., and 40% are of working age. Adults with a prior cancer diagnosis are 1.4 times more likely than people of similar age, sex, and education level to be unemployed. They're more likely to have limitations in the amount or type of work they can do because of their health problems.

(04:00): Cancer survivors desperately want to return to work and see their employment as a measure of self-worth, competence, independence, and contribution to society. Our goal, as [healthcare] providers, is to get our patients back to work. The research shows that patients desperately want to return to work and that survivors see employment as a measure of their self-worth, competence, independence, and contribution to society. Work also allows them to have social contacts, make friends, interact with peers, and feel affiliated with a greater cause. Finally, patients see a return to work as a measure of recovery from their treatment. They often say that it allows them to feel an identity beyond the patient when they're involved in working.

(04:47): Survivors of a blood cancer are ten times more likely to quit work for cancer-related reasons than patients with breast cancer. One of the largest studies of cancer survivors interviewed 1,400 patients between ages 25 and 62 who were one to five years after their cancer diagnosis. They asked patients about their employment from diagnosis to follow-up, their work-related disability, and whether their disabilities were reasons for quitting work or were cancer-related.

(05:15): At six months, 40% of patients had returned to work, and at one year, approximately 70%. However, 16% of patients were still out of full-time work for four years. Now to me, this sounds encouraging. However, when they looked at patients by what type of cancer they had, the survivors of blood cancers were ten times more likely to quit work for cancer-related reasons than patients with breast cancer. And our studies saw only about 50% of patients returning to work by three years.

(05:56): Returning to work after a stem cell transplant may be difficult due to a lengthy course of immune suppression drugs, prolonged graft-versus-host disease, and long periods of time out of work and on disability. So, why are patients with blood cancers at higher risk? The initial prolonged inpatient stays come with the diagnoses of leukemia, lymphoma, and multiple myeloma—recurrent hospitalizations due to infections when patients become neutropenic. The stem cell transplant process, which all of you have gone through, may lead to lengthy courses of immune suppression drugs, prolonged duration of graft-versus-host disease, and long periods out of work and on disability. Whether or not this was encouraged by your provider or your center, returning to work, in the long run, is difficult. So, you can see if you are having struggles returning to work or having difficulty reintegrating, you are in good company.

(06:52): Transplant center directors were surveyed about the kind of support and guidelines they use to help stem cell transplant survivors return to work. I will now discuss defining these barriers and supports. So, my first step when I tried to address what are the issues here and why patients are not getting the support they need to return to work and why we are only seeing 50% of transplant patients going back to work, we decided to survey center directors to see what kind of support and guidelines they were providing their patients. We also decided to survey survivors in the long-term follow-up clinic to see their problems. Were they receiving any support, and what kind of support would they like to receive if we were to offer them?

(07:42): Our goal with the center director survey, sent to 150 stem cell transplant centers across the U.S. and abroad, was to determine whether transplant centers had guidelines for return-to-work post-transplant. Then, have them send the details of those guidelines so we can compile them and send them to all the centers to assist their patients.

(08:07): The second goal was to determine whether the transplant centers had support programs for these patients and what type of support these programs entailed. What we found was encouraging yet disappointing.

(08:23): Most transplant centers who responded to the back-to-work survey said that returning to work is a problem for transplant survivors and that they do not have guidelines or programs in place to support survivors who want to return to work.  When we asked the center directors:

• "Is return-to-work a problem for transplant patients?" most of them said yes. There was concurrence in this community that there were issues.
• "Does your center have return-to-work support?" most centers said no.
• "How helpful do you think a return-to-work support program would be?" most said very or somewhat useful.
• “What types of return-to-work support might be helpful?” Many agreed that these would:
  
  • physical rehab
  • psychosocial counseling
  • vocational rehab
  • interfacing with employers

(09:11): In the end, we concluded that guidelines on return-to-work support for post-transplant patients were lacking. When I asked the transplant center directors to send me the guidelines that many reported they had, they included statements like "patients can return to work at about one-year post-transplant" or "patients can return to work when they're off immune suppression."

(09:42): During our research, we discovered that there is potential for us to improve the success of patients returning to work after a transplant. However, we noticed few guidelines available for patients, providers, and employers to follow. To address this issue, we suggest developing structured guidelines that can be used by all parties involved.

Additionally, we conducted a survivor survey that involved 1,000 post-transplant survivors who were surveyed one to five years after their transplant. The survey, conducted at the Fred Hutchinson Cancer Center, asked questions about their pre-transplant work status, their medical team support, employer support during and after the transplant, and suggestions for support interventions.

(10:31): A survey of 1,000 transplant survivors who were 1-5 years out from transplant found that only 51% were working three years after transplant. We confirmed that only 51% of survivors were working part- or full-time three years post-transplant. Interestingly, of the survivors currently working, 53% had changed to a flexible work schedule or location or both.

(10:51): Another interesting finding was that at least monthly communication with their employers was associated with a greater likelihood of successful return to work. Many workers reported motivation to return to work to feel useful and productive, that they needed the money, the health insurance or that interaction with people was vital to their lives.

(11:19): Transplant survivors said that more knowledge about post-transplant problems, disability benefits, realistic back-to-work goals, and support from physical therapists would help return to work efforts. Regarding helpful support interventions for the patient, many said they would like advice about what issues survivors face after transplant, advice about disability benefits, support from a physical therapist on strength and coordination, and better defining their work goals and readiness. We have yet to get to the point where we have interviewed these patients. Still, two centers have interviewed transplant patients to look at barriers and support for transplant patients.

(11:58): Much of the return-to-work post-stem cell transplant work has been done in the Netherlands. This study interviewed 15 Dutch post-transplant patients. They also commented that perceived barriers included their cancer treatment's duration and side effects, poor health before diagnosis, and difficulty commuting and doing household tasks.

(12:25): The facilitators included financial incentives and keeping in touch with the workplace, which echoed what our study had shown. They have the support of other patients and families, which is shown to be very important in facilitating the return to work for patients. Their families need to be on board with the importance of returning to work; it makes it very difficult for them to return. And they are then looking after one's health.

(12:52): In the Australian study, they conducted interviews with 50 Australians one-year post-treatment for blood cancer, and they interviewed a distinct group of patients who wanted to return to work but had problems. The barriers, in this case, included physical complaints, including graft-versus-host disease, fatigue, sun sensitivity for those with outdoor professions, and an inability to do physical work, which we often forget because many of the interventions are geared towards people that can work from home or are working on computers, rather than people who are doing physical work. And then loss of self-confidence and competence.

(13:37): A team of physicians, a social worker, an occupational and physical therapist, an infectious disease specialist and a behavioral psychologist have developed guidelines and tools that transplant teams can use to help patients return to work.  To address both the patient concerns and the lack of guidance and support in the transplant centers, a group of us convened to develop return to work guidance and planning tools that may help the patient have increased communication with their provider and the employers. The group came together to help patients better define their work goals, determine their work readiness, provide some referrals to return-to-work support and provide some advice regarding accommodations throughout the recovery process.

(14:22): We convened in 2020 at the ASTCT (American Society for Transplantation and Cellular Therapy) meeting in Orlando, Florida. There were several BMT physicians, a social worker, an occupational, physical therapist, an infectious disease physician, and a behavioral psychologist. We reviewed the literature to see what was out there in terms of guidance for transplant patients. We came upon very little, most of which I've already shown you today. Several assessments looked at facilitators and barriers retrospectively and through some interviews. However, there were no published guidelines or guidance and no interventional studies looking at improving return to work, specifically in post-transplant patients.

(15:24): So, much of the guidance that we developed was based on the general cancer literature, trying to include the literature that was published by the individuals in the group, specifically on behavioral psychology, occupational and physical therapy, and infectious disease.

(15:50): We divided our guidance committee recommendations into pre-transplant, during-transplant, and post-transplant recommendations. We also provided resources in terms of web access to the Americans with Disabilities Act (ADA), Family Medical Leave Act (FMLA), Triage Cancer, and Cancer and Careers.

(16:07):  I'd also encourage you to look at the Anthony Nolan website. The Anthony Nolan organization did extensive feasibility and resource utilization studies on transplant patients. It came up with some nice guidance in terms of return-to-work called Returning to Work.

(16:36): Return to Work Guidance Committee Recommendations included the timepoints pre-transplant, during transplant and after transplant.

Pre-transplant

• Define work Goals.
• Understand Disability Benefits, applying for; disability requires you to say that you will be out of work for a year.. This makes it challenging to also plan for return to work.
• Obtain the financial assistance needed to have time off and optimize physical fitness prior to the transplant, knowing that some of that physical fitness is going to be lost.

During the transplant

• Maintaining physical, cognitive, and psychosocial fitness; we dispelled some of the fallacies regarding optimal blood counts needed to perform continuous physical therapy throughout the transplant procedure.
• We also encouraged employee/employer communication and provided some tools. That fell out as something important in several of these studies.

Post-Transplant

• We recommended re-evaluating work goals.
• The timing of return to work.
• Employee rights and understanding that the Americans with Disabilities Act (ADA) provides legal rights for patients returning to work after cancer. The employer will not just be accommodating to you because they want to, but they are legally obligated to. There are potential work modifications that you can ask for under the ADA and additional ones you can ask for just because you want to. [Note: the ADA requirements apply only to employers with 15+ employees]
• The importance of provider/employer communication has fallen out as severely lacking. It would be beneficial if the provider taking care of you communicated with your employer directly.
• Then we provided tools for the provider to evaluate physical health, functional capacity, psychosocial issues, neurocognitive ability, and exposure risks.
• Role of occupational therapy, physical therapy, and vocational rehabilitation to help you in the process.

(18:59):  Return to Work Guidance and Planning Tools Check List. The guidance was published just this past December in the ASTCT Journal, and we included two supplemental handouts. This is published, open access so that you can go to ithe website and print out the supplemental forms.

(19:25): This was for providers, but you can bring this to your provider and say, "Okay, this is what I'd like to discuss. So, this is before the transplant; these are questions that the provider can potentially ask: "What are your job duties?" Are you currently working?" Is your job the main source of your income for your family? Do you want to return to work? Is your employer planning to hold your job?" When we discussed with patients whether this was happening, much of it wasn't happening. The only thing documented in the chart was what their profession was.

(20:03): Again, we have the referrals here on the supplemental handout [click on download slides to access], and I provided a link to the guidance, the supplemental materials RTW Guidance Committee Recommendations that you can click on to be able to share this, and the return-to-work planning tool, which I will go over in a minute, is also included, and then guidance for your medical team.

(20:29): Questions to ask yourself after transplant about when and whether to return to work. In the post-transplant setting, ask yourself these questions while re-evaluating your work goals:

• If money was not a concern, what would you want to do with your time?
• Would you want to return to the same job you had before the transplant?
• What are your concerns about being able to do the same work you did before the transplant?
• What kind of assistance would you need to support your next steps?

(20:58): The document includes detailed instructions on when it is appropriate to return to work. It's important to avoid returning too soon or too late, which can cause issues. Your doctor can help you make this assessment, or you can evaluate it yourself:

• Are you physically, mentally, and emotionally ready?
• What support would you need to get there?
• How can your medical team support you by communicating directly with your employer?
• What information can they give them, or how can they advocate for you to return to work and have the flexibility you need?

(21:36): How to advocate for yourself legally?

• The Americans with Disability Act says employers must make reasonable accommodations to support cancer patients returning to work.
• The organization Triage Cancer, which I listed in the support, if you contact them, they are happy to help you learn what rights you have and how to advocate for yourself legally.

Understandably, you may need time off from work for hospital stays and appointments, reduced hours, flexible working, changing duties, working from home, or regular breaks. In fact, the law may require your employer to provide these accommodations for you when you return to work. However, your employer may also offer additional accommodations that are not legally required. Remember, it's okay to ask for what you need.

 Your well-being is important, and your employer should understand that.

(22:38): Ongoing communication between the healthcare provider and the employer about what's happening with the patient can facilitate return to work.  I'm trying to impress this on providers; hopefully, future transplant patients will benefit from this. You can point your provider to this guidance of why including the provider is important. So, the medical team can only provide information as to the risk of infections, fatigue, difficulty with concentration, memory, and issues you may be having, but the employer can supply the understanding of the job demands and the workplace culture and what supports can be made available to the survivor in the workplace. Some of these work readiness determinations focus on survivor readiness and the workplace's readiness to provide you with what you need. Communication between the provider and the employer about what's happening with you can facilitate that and hopefully make it easier for you.

(23:44): In the last part of this section, I will go over this return-to-work planning tool which is also included in the guidance. We designed this planning tool for you to use with your provider. Our intention was for them to reach out to you, but you can also reach out to them and say, "Okay, can we go over this document?"

(24:11): Determining work accommodations that would enable a patient to return to work. Have you considered what accommodations would benefit you? It's important to communicate your needs, such as paid sick time, working from home, reduced hours, or a flexible schedule, to your employer. Additionally, if you need support, they can provide referrals to a PT/OT for an evaluation of your workplace. If you feel it would be helpful, you can request that your employer be contacted. Advocating for yourself can lead to a more comfortable and productive work environment.

(24:49): Do you need more counseling about disability benefits? There are a lot of intricacies of disability benefits I don't understand. Still, the more I learn about disability benefits, the more I understand that you can design a disability benefits plan that allows you to return to work part-time.

(25:12): The second part of the return-to-work planning tool is a patient/employer reintegration plan. So this can be done with your employer, and some of it may seem touchy, but whether it's your supervisor or an H.R. representative, they need to know what issues currently impact your return to work. The other important thing to discuss with them is what you want your job description to look like and your initial duties to include. So, I've been encouraging my patients to do this earlier on in the process. The earlier you begin to discuss these issues with your employer, the more accommodating they are.

(26:05): In the past, we've encouraged patients to wait a year to return to work, but now we realize no data supports that. We are encouraging them to start discussing these issues with their employers, even three to six months after the transplant, to encourage them to become aware that these accommodations will likely need to be made. So if you say, "Okay, I'm ready to go back to work two hours per day, three days a week," that's going to be much more accepted at a three to six-month time point than it would at a one-year time point, and often the employers are willing to accommodate this graded in return-to-work, which is often more beneficial to the patient.

(27:11): And then here, this is for the employer. What work accommodations are they willing to provide? This documents if they're willing to reduce hours, have a flexible schedule, or work from home. It also allows them to think about what they would be willing to provide.

Then designing a communication plan. So how often are you? They would check in with your supervisor to review and adjust this plan. Is it working? Is it not working? Meeting with coworkers even before you go back to work. What’s the plan for that? And what do you want to disclose? If you have human resources at your place of employment, what kind of accommodations you can get may depend on how much you're willing to disclose about your diagnosis and treatment. So that is also a touchy and important topic.

(28:13): Trial will test the effectiveness of suggested interventions to help patients return to work after transplant. The last topic of this talk, I will be discussing future directions. My focus for the next phase of this research is to incorporate return-to-work support interventions. There are various areas that can be targeted, such as social support, physical support, or employer support. To begin with, we have designed an initial intervention that will be led by social workers. This pilot intervention will be implemented in the next three to six months. Our center has decided to start with social work-led intervention as it is challenging to involve vocational rehab and occupational therapy in such services.

In this study, we're hoping to enroll 15 patients, and we're going to have social work-led counseling specifically about return to work. This will happen at several time points, starting even pre-transplant, which is important, talking about return-to-work goals, establishing some communication with the employer, and then assistance completing this return-to-work planning tool even as early as day 100.

(29:46): With the social work-led counseling, hopefully, we can help establish some work-related goals and needed referrals, but also increase our patient's feelings of support regarding their return-to-work journey, as our patients continuously reported not receiving any support from the providers at our center. The second part of this intervention will determine the ability to include the patients' employers. So, this seems an obvious goal. Still, I've continuously heard that including employers in these things is very difficult. Our goal will be to include supervisors of each of the enrolled patients, so hopefully, they'll be invested in the process.

(30:45): Then we will include the employers in the social work-led guidance to keep them abreast of what is needed for each patient, what accommodations might be needed, and how disclosure might be approached with the individual supervisors. Then we'll try to have the patients and supervisors complete the employer part portion of the return-to-work planning tool, and this will be the first step in seeing if we can provide support and then get patient, social work, and employer feedback on whether this type of intervention was useful.

(31:31):  It's clear that our goals have shifted over time, particularly when it comes to cancer care. While many studies focus on the percentage of patients returning to work, we must prioritize how patients feel supported throughout their treatment journey. Patients have felt unsupported for too long, and it's time to change that. Ultimately, the goal should be to ensure patients feel fully supported, even if that means

(32:07): Summary of Presentation: In conclusion, I've hopefully made you aware that return to work is an issue for many post-transplant patients. If you struggle to return to work, you are not alone. This RTW Guidance Committee Recommendation has recently been published. There's open access, and it's usable by transplant survivors and their medical teams.

(32:37) If your team is unaware of it, print it out and bring it. Or read it and see if there's information you can get that can assist you. What can you do if you say, "Okay, I really want to return to work"? I would talk to your provider about your readiness to return to work. So many patients report it's because their doctors have not cleared them to return to work that they have not gone back to work.

(33:03): There’s no data that says patients should wait a year before returning to work. So, I think providing some of this information from the guidance that there are no data to say you need to wait a year, that there are no parameters, that there's a lot of flexibilities that can be provided to facilitate returning to work. If you're able, I suggest talking to your employer about work flexibility, no matter how far out you are from a transplant.

As a cancer survivor, the law protects your ability to have these accommodations at work. I would encourage you to contact Triage Cancer if you have any questions about your legal rights as a transplant survivor.

I recommend using the Return-to-Work Planning Tools, even if it's just something you do on your own, to design a return-to-work plan and get an idea in your head. I often have patients at their day 100 say, "I'm not ready to return to work full-time, so I can't go," or "I'm going to lose my disability or my medication coverage if I return to work."

(34:14): While you are on disability and planning to return to work, ask your transplant team for referrals to  psychology, physical therapy, and vocational rehab experts, if you need help to get ready to return to work. Your disability is good for nine months while you transition back to work. And then ask for referrals if you need a psychology, physical therapy, vocational rehab, if you don't feel like you're getting enough support, there are many tools that these providers have in terms of assessment, in terms of workability that they can provide you and your employers to see where you are being able to return to work.

(35:03): And then here's my acknowledgment slide; Karen Syrjala, Stephanie Lee, Paul Carpenter for mentoring and encouraging all this work and supporting the development of the guidance, and Jennifer Wilder, who referred me today to be able to give this talk, and then all the people at the NMDP who help with the center director survey. And then here's our team, Katie Schoeppner and Chiara De Biase, who were the most instrumental, a social worker and occupational therapist in helping with the guidance development, and then our patients and families, who filled out endless surveys to help facilitate this work. And with that, I will take any questions that you might have.

Question and Answer Session

(35:52): [Marla O'Keefe]: Dr. Salit, thank you so much for that excellent presentation. This is an important topic and all our people want to return to work, so your work is really important. Our first question is twofold. You often refer to communicating with your employer; does that mean talking to your manager, HR, etc.? And the second part of the question is, should you come right out and ask your employer if they will hold your job for you?

(36:27): [Dr. Rachel Salit]: Yes; you should ask your employer if they're holding your job for you and how long they'll hold it. As a transplant community, we have made the mistake of telling people they need to be out of work for one year. Then at that time, many employers are not legally required to hold the job. I would ask them how long they're willing to hold the job. And if they're willing to hold the job for X amount of time, at some point before that time runs out, if you want to keep that job, I would encourage you to develop some reintegration plan, whether it's an hour a week you go back, or 20 hours a week you go back, because if you return, they're required to provide you with those accommodations.

When navigating issues with your manager, supervisor, or H.R., the best course of action will depend on the specific workplace. Speaking with your supervisor about any concerns you have is a good idea. At some workplaces, H.R. may only be able to intervene or provide protection for your job with the support of your supervisor. Contacting H.R. may be the next best option if you feel uncomfortable talking with your supervisor directly. They can work with you and your supervisor to find a resolution that meets everyone's needs.

(37:59): [Marla O’Keefe]: Thank you for that. Next question. It takes me longer to do tasks post-transplant than before; I worry that when I attempt to return to work, I will become fatigued, frustrated, and disappointed with my abilities. I don't want to use my illness as a crutch. Is it something I should have a discussion with my employer?

(38:25): [Dr. Rachel Salit]: Yes, I suggest speaking with your provider and obtaining an objective measure of your strength and fatigue from an occupational therapist or a physical therapy referral. With this documentation, your provider can advocate for your current limitations with your employer. It's worth noting that COVID has presented an opportunity for transplant patients to work from home with fewer questions. Consider blocking off time for a physical nap during the day instead of napping under your desk to accommodate for any lingering fatigue or time-consuming tasks.

The other thing you can do is negotiate for shortened days. You can say, The patient I had that was working 30 hours a week from home, she negotiated for those 30 hours per week. Now I think it took her 40 hours to do the 30 hours of work because of what you said, it takes longer, but she felt like negotiating for that made it doable for her." I would talk to your provider, see if you can get an assessment, and then see if you can get the flexibility you need from your employer regarding potentially fewer days, fewer hours, or the ability to work from home. All those accommodations do help patients successfully return to work. When they see you're trying, in my experience, they're more likely to try to continue to accommodate you.

(40:54): [Marla O'Keefe]: The next question is, how do you balance a patient's right to privacy and involving employers in the return-to-work process?

(41:08): [Dr. Rachel Salit]: Disclosing personal health information can be difficult, and ultimately it is up to the individual. However, if you value your privacy, working with H.R. may be the best option depending on the specifics of your situation. Remember that if you choose not to disclose an illness, H.R. may be limited in their ability to provide support. Consider contacting the Triage Cancer organization for further guidance on your rights and options.

(42:07): [Marla O'Keefe]: Okay, we appreciate that honest answer. And for those of you who are not aware of Triage Cancer, they're another advocacy group we work with. They did a presentation earlier today, and you can find information on their website, so thank you. The next question is, are there any unique issues with post-CAR-T return-to-work scenarios like long or short-term disabilities or anything else?

(42:37): [Dr. Rachel Salit]: There isn't any specific guidance for CAR-T patients regarding their rights. It can be challenging for transplant patients to navigate the Americans with Disabilities Act, as it doesn't specify any particular rights for those with cancer diagnoses. This can lead to struggles when trying to return to work, as we've seen with the low percentage of blood cancer patients returning compared to those with breast cancer. While CAR-T cell patients face similar challenges with long hospitalizations and fatigue, they are immunocompromised and not on immune suppression. While there isn't anything specific regarding rights, it's important to acknowledge and empathize with the difficulties that individuals in these situations may face.

(43:54): [Marla O’Keefe]: Thank you. This person asks, do I need the transplant doctor to sign a document for time off after my transplant? And if so, are there people at the transplant center, like social workers or coordinators, that can help me with that paperwork?

(44:14): [Dr. Rachel Salit]: Yes, the transplant center will assist you with obtaining time off work paperwork, and the doctor will complete the necessary forms to indicate that you require time away from work. In the event that you will be absent for a period longer than that permitted by FMLA, the transplant center will also help you enroll in disability benefits. However, it should be noted that signing up for disability implies that you will be off work for a year to qualify for long-term disability benefits.

This may seem counterproductive since we encourage people to return to work as soon as possible. Nevertheless, disability benefits allow you to return to work part-time earlier if desired. Therefore, I advise collaborating with the social workers and doctors at the transplant center. They will assist you in filling out the required paperwork and provide guidance on your options when returning to work.

(45:23): [Marla O'Keefe]: Okay. The next question is, I am five months post-transplant. I plan to interview for a new job in the next few months as my current employer is planning to terminate my position. Do you recommend disclosing or not disclosing my illness? Are there pros and cons?

(45:44): [Dr. Rachel Salit]: It is crucial to consider whether you are capable of returning 100% or if accommodations will be necessary. Additionally, it is important to ensure that the flexibility needed for doctor's appointments is provided. During job interviews, individuals may be hesitant to disclose recent medical procedures such as bone marrow transplants due to concerns about job competitiveness and discrimination.

Technically, discrimination is not allowed, but it may still occur if two candidates are equally qualified. To avoid potential issues, disclosing any necessary accommodations or medical appointments is advisable to prevent being perceived as incapable of performing the job.

It may be better to disclose it once you're offered the job, and I hate to say that, but if you get the job and then when you accept the job, you can say, "You know what, I'm willing to accept this job, but I'm a recent bone marrow transplant survivor and if I accept this job, I'm going to need this time to be able to go to doctor's appointments." So maybe the better way to do it is to interview, get the job, and then once you have the job, say, "I'd love to take this job, but this is what I'm going to need to work here."

(47:34): [Marla O'Keefe]: The next question is, I am on temporary disability with Social Security under 60 years old. I want to go back to working a little bit to see how I do, but I'm afraid that I will lose my disability income, which does not pay for everything, but it does still help. I hear if you show any income, it will decrease your assistance. Do you have any advice?

(48:05): [Dr. Rachel Salit]: It is important that you speak with the social worker at your practice as soon as possible. It is my understanding that disability benefits can continue for up to nine months while you work part-time. However, it is unclear whether your disability will decrease during that time. To ensure a safe and successful transition, I strongly recommend contacting a social worker or vocational rehab professional to determine how to overlap these benefits safely. Remember that if, during the nine-month trial period, your disability prevents you from being successful at work, you can keep your disability benefits.

(48:57): [Marla O’Keefe]: Thanks. The next question is from someone in the cleaning business still recovering from the transplant. They want to know if they can still clean after the transplant or if they're concerned about being exposed to cleaning products and things like that.

(49:19): [Dr. Rachel Salit]: I would talk to your doctor. I do not prevent people from doing the types of work that will be able to support themselves as long as it's done safely. So, clear it with your doctor, but if you're wearing safe protective gear, then it should be fine.

(49:48): [Marla O’Keefe]: Another question is, are there any studies on transplant survivors and their ability to maintain full-time employment successfully, especially in high-stress jobs?

(50:05): [Dr. Rachel Salit]: There's very little data on transplant patients and work, period. So no, there's nothing specific to that. The irony is that patients with prestigious high-stress jobs often get the most support from their employers because it's just the kind of employer they have. So, you would not be a bigger failure at a high-stress job than at a low-stress job. But in any job, you will return to, I suggest starting with flexible work and decreased work hours because you'll know. And if it's a high-stress job and you started at 20 hours per week, and you feel like, "Oh, this is as much as I can do," I think it's easier to convey to your employer, "This is good and why don't I stick with this for a while," than going back full time and then saying, "I can't do this."

(51:33): It is more efficient to aim for achieving less and successfully proving yourself than attempting the entire task and ending up feeling drained, frustrated, and unsuccessful. Even if you can only work for fewer hours or days, feeling accomplished is still a positive experience.

(51:56): [Marla O’Keefe]: Thank you. Do you have any recommendations for those in the education field returning to work with youth in a school setting without all the vaccinations?

(52:11): [Dr. Rachel Salit]: It is important to exercise caution when returning to school, especially in a setting where sick children may be present. While measures such as wearing masks and washing hands frequently can be taken, it may be wise to avoid working closely with a school nurse or in a similar role. However, suppose you are several months post-transplant and feel compelled to return to school. In that case, there may be options available to ensure your safety. For example, one educator had a plexiglass screen installed on her desk, similar to those found in grocery stores. This allowed her to teach and interact with students while still being protected from potential exposure. Similar solutions may be worth considering to ensure your safety and well-being.                                                             

(53:31): [Marla O’Keefe]: Okay, thanks. And this is kind of similar to that question, I think, and this will be our last one., I am nine months out of an allotransplant. Do I need to worry about a workplace environment where people don't wear masks because I'm still immunocompromised?

(53:51): [Dr. Rachel Salit]: In that environment, we have no control over other people's actions. Your best course of action would be to wear a mask. At our center, we recommend re-vaccination for COVID starting on day 100 after the transplant, followed by receiving three shots and a booster and getting the flu shot as early as six months after the transplant. After that, if you find yourself in an environment where those around you are not wearing masks, we advise you to do so.

(54:34): [Marla O’Keefe]: Okay. Dr. Salit, thank you very much for this excellent presentation, and thank you, the audience, for your excellent questions.