Once treatment for cancer ends where does that leave you? You may celebrate, take time to reflect or may be full of relief. For many it can be all of these things and a time to start living life to its fullest.
However, for some issues like fatigue, anxiety, weight changes, lymphedema and neuropathy can be troubling and may require further support. Additionally, many people face financial distress brought on by the cost of their treatment or loss of income during treatment.
For those reasons, the Christ Hospital Health Network provides cancer survivors support, resources and guidance on managing life after their treatment ends. These opportunities may include individualized survivorship plans, peer support and education programs.
In this very important segment, Jaimie Robinson, MSW, LISW-S discusses the cancer survivorship program at The Christ Hospital Health Network and the many resources available for cancer patients and their families.
Cancer Survivorship Resources at The Christ Hospital Health Network
Featured Speaker:
She has years of experience working in the Alzheimer’s and related dementia field. Previously she worked with the Alzheimer’s Association National Office, and the Northwestern University Cognitive Neurology Alzheimer’s Disease Center. She has published papers and chapters in books about non-pharmalogical treatment of dementia-related symptoms.
Jaimie has had leadership experience with the Chicago Bridge as the Marketing Board Chair, and the Society of Social Work Leaders in Health Care Chicago Chapter Board. Currently Jaimie is the President of the Mariemont Preschool Parents Group a nonprofit in Cincinnati with a focus to support families with young children with enrichment, growth and peer support. Additionally she services on the executive board of Hamilton County Recovery Center.
Jaimie was raised in the Cincinnati area and although she move to Chicago for 10 years, she is back to Cincinnati where she lives with her husband Ben and two children Hazel and Phoenix.
Jaimie Robinson, MSW, LISW-S
Jaimie Robinson, MSW, LISW-S: is a graduate of Loyola University Chicago Master of Social Work program and is Licensed Clinical Social Work Supervisor in the state of Ohio. As an oncology Social Worker Supervisor, at the Christ Hospital Cancer Center Jaimie has a special interest and expertise in the financial and emotional distress people experience especially those who have limited resources and support to access care and cancer survivorship.She has years of experience working in the Alzheimer’s and related dementia field. Previously she worked with the Alzheimer’s Association National Office, and the Northwestern University Cognitive Neurology Alzheimer’s Disease Center. She has published papers and chapters in books about non-pharmalogical treatment of dementia-related symptoms.
Jaimie has had leadership experience with the Chicago Bridge as the Marketing Board Chair, and the Society of Social Work Leaders in Health Care Chicago Chapter Board. Currently Jaimie is the President of the Mariemont Preschool Parents Group a nonprofit in Cincinnati with a focus to support families with young children with enrichment, growth and peer support. Additionally she services on the executive board of Hamilton County Recovery Center.
Jaimie was raised in the Cincinnati area and although she move to Chicago for 10 years, she is back to Cincinnati where she lives with her husband Ben and two children Hazel and Phoenix.
Transcription:
Cancer Survivorship Resources at The Christ Hospital Health Network
Melanie Cole (Host): Once treatment for cancer ends, where does that leave you? You may celebrate, take time to reflect or maybe full of relief. But for many, it can be all of these things and a time to start living life to its fullest. However, for some, issues like fatigue, anxiety, weight changes, lymphedema, neuropathy, can all be troubling and may require further support. My guest today is Jaimie Robinson. She is an oncology social work supervisor at The Christ Hospital Cancer Center. Welcome to the show Jaimie. So, explain a little bit about cancer survivorship and what is that?
Jaimie Robinson, MSW, LISW-S (Guest): Sure. Thank you for having me. Cancer survivorship is defined a number of ways and I think it is a personal preference how a patient would like to define themselves. Often how we look at survivorship, in a clinical way, is that it is a person who has completed their course of cancer treatment and they are in a phase of survivorship, so they have moved beyond the cancer treatment and now are in recovery. However, like I said, because it’s an individual decision on how you would like to view yourself as a cancer survivor; often some organizations say that anyone diagnosed with cancer who is living is a survivor, even if they are still undergoing treatment or diagnosed with a stage four illness where they continue treatment. So, we have a number of ways to look at survivorship, but I think it is a little bit of personal preference and a little bit how a doctor would define it would be more on the clinical side of ending treatment.
Melanie: How do you identify the needs of cancer survivors? What are some of the late and long-term effects in survivors and things like depression, or as I mentioned in the intro, lymphedema, neuropathy, any of these things? How do you identify it after their treatment ends? Is there follow-up? How does that all work?
Jaimie: That’s a really great question. So, typically, we are – the physicians, the oncologists will meet with the patient and discuss at the end of their treatment a plan for follow up. And at that time, oftentimes, the patient is given what is called a survivorship care plan. And a survivorship care plan outlines the course of treatment that the person has had and in it will identify possible problems related to the treatment, long-term side effects. During that appointment, when the plan is given; it gives a person an opportunity to ask questions about symptoms they might have, and we also will screen this patient for distress. An oncology distress screening tool is given to patients at that survivorship appointment and in that tool, we ask about emotional responses. So, if they are feeling depressed or anxious; they can let us know and scale that feeling from one to ten. So, a lot of how we learn about problems is going to be how a patient reports it. And the opportunities to tell us that would be either at that survivorship appointment or at future follow up appointments that the doctor will designate when they would like to see you again. So, if the patient is distressed and they do have emotional concerns, depression, anxiety are kind of common; then a social worker often would see a patient and address those problems by offering resources for support and further assessing those emotional concerns.
Melanie: So, tell us about some of those resources for support and what do you provide at The Christ Hospital Cancer Center?
Jaimie: So, with regard to emotional support, our social work team is clinically trained to assess and assist with counseling. Oftentimes, we would refer to an organization to help with further counseling and speak further with physicians on possible medications or treatment needed for those emotional concerns. And so, we work directly with some organizations in the local community. The one for example is Cancer Family Care. They provide individual counseling for patients going through cancer treatment and survivorship as well as family members too. So, a referral to that program would not be uncommon. We often refer to programs like Cancer Family Care. So, that would be one way to take care of the emotional side of things.
But there are other programs we offer to help manage other symptoms and for example another very, very common symptom patients have is cancer fatigue. Fatigue can strike during treatment, it could be after treatment; but those are common – that’s a very common side effect. So, we offer a cancer fatigue program that is run by our physical therapy department and a licensed physical therapist would evaluate a person and then recommend an exercise program to help manage that tiredness that a lot of patients in survivorship are burdened with. And a lot of these symptoms, including fatigue, what it does is it impacts someone’s ability to get back to the life that they wish to live. So, the fatigue program is going to help bring someone back to that level of how they want to function. So, that’s one program example another one would be our lymphedema program. Again, through our physical and occupational therapy services at Christ Hospital; a lymphedema certified therapist would do an evaluation and give options for lymphedema which is swelling of the arm or leg based on lymph node removal. And that’s a referral from a physician to that occupational therapist to do that evaluation, but it is another option to help manage the symptom that can impact quality of life after treatment. In addition, we offer free weekly classes; yoga classes that focus on cancer survivors and those undergoing treatment. These classes are a great way to help individually combat some of the common symptoms such as fatigue and anxiety and our yoga therapist is trained to work directly with cancer patients and does such a wonderful job with patients individually and in the group setting. It’s another great addition to our survivorship program for cancer patients.
Melanie: So, as long as you are mentioning occupational therapy and physical therapy; there are other types of care involved in the survivorship program. Does this involve a real coordination of care between providers and between the providers and the patient themselves? Speak about some of the other types of support that are necessary in survivorship, maybe financial guidance, helping to pay the medical bills, negotiating those life changes you know, work and disability related questions. They have so many things that could be involved in an all-encompassing program.
Jaimie: Yes, yes it does definitely takes a team and it starts with the physician and open communication from a patient to the physician about the problems that you are facing as a patient living in cancer survivorship post treatment. And then from there, the team is ready to support the patient and that would be through our social work team addressing emotional and supportive needs, including financial problems. Financial problems are a really common issue, not just because of the medical bills; but because usually when you are undergoing cancer treatment; you might have had a change in your ability to work during treatment. So, your income has been impacted. So, to get back to stability; it takes some extra resources and tools and we also have financial advocates who have been helping patients along the way during treatment that are available in survivorship to help, if needed with any other medical bill related needs.
The navigators that we have in our program are specialized in a particular kind of cancer and can offer additional education and referrals to these kinds of programs within The Christ Hospital and the larger community. And so, together, with the oncologists, that team works side by side to make sure that the patient’s needs are met in survivorship. And beyond that, we offer peer support. So, we know that a lot of times patients learn from each other and their experiences and so there are a couple of different ways that we are trying to connect survivors to each other. And one of those ways is a programmatic educational session where we invite survivors back to the Christ Hospital in a group format to have educational subjects presented to them on topics that matter to them. And we also have launched a private Facebook support peer to peer support group for cancer survivors of The Christ Hospital to connect to each other.
Melanie: So, for other physicians that are looking to this survivorship program, how do you evaluate the impact of the program on outcomes and how are you looking at the patients down the line and saying you know this really did work?
Jaimie: So, that comes in an individual way as we are assessing patient’s outcomes and their symptoms and if they are resolving symptoms or if they are feeling their symptoms have been addressed. In addition to that, we are offering a what we are doing on an ongoing basis is serving our patients in an informal qualitative way to ask our patients what they are facing and how – and when we learn that, we are able to refine our program to know better what we need to do to build to help support them. So, asking what kind of symptoms they are living with, what kind of concerns they have in survivorship and that way we can continue to modify our program and address currently with what our patients are facing and how they report it to us in those evaluations.
Melanie: That’s so important and so in summary Jaimie, please tell other healthcare providers what you would like them to know about cancer survivorship resources at The Christ Hospital Health Network and when to refer.
Jaimie: The survivorship resources are a continuation of our cancer support services throughout treatment. And it is refined more specifically in cancer survivorship knowing what we do about the commonalities of problems faced and the best way to refer someone to any of the cancer support services that were mentioned and others that we offer would be to either contact myself or email us and we would be able to direct the patient to these programs individually. Some need medical referrals and we would be able to let the physician know. Some do not. So, we would be able to navigate with the patient the next steps or with the physician the next steps.
Melanie: Thank you so much for being with us today. You’re listening to Expert Insights, Physician Views and News with The Christ Hospital Health Network. For more information please visit www.thechristhospital.com/cancersupport , that’s www.thechristhospital.com/cancersupport. More information on all of The Christ Hospital physicians is available at www.tchpconnect.org . This is Melanie Cole. Thanks so much for listening.
Cancer Survivorship Resources at The Christ Hospital Health Network
Melanie Cole (Host): Once treatment for cancer ends, where does that leave you? You may celebrate, take time to reflect or maybe full of relief. But for many, it can be all of these things and a time to start living life to its fullest. However, for some, issues like fatigue, anxiety, weight changes, lymphedema, neuropathy, can all be troubling and may require further support. My guest today is Jaimie Robinson. She is an oncology social work supervisor at The Christ Hospital Cancer Center. Welcome to the show Jaimie. So, explain a little bit about cancer survivorship and what is that?
Jaimie Robinson, MSW, LISW-S (Guest): Sure. Thank you for having me. Cancer survivorship is defined a number of ways and I think it is a personal preference how a patient would like to define themselves. Often how we look at survivorship, in a clinical way, is that it is a person who has completed their course of cancer treatment and they are in a phase of survivorship, so they have moved beyond the cancer treatment and now are in recovery. However, like I said, because it’s an individual decision on how you would like to view yourself as a cancer survivor; often some organizations say that anyone diagnosed with cancer who is living is a survivor, even if they are still undergoing treatment or diagnosed with a stage four illness where they continue treatment. So, we have a number of ways to look at survivorship, but I think it is a little bit of personal preference and a little bit how a doctor would define it would be more on the clinical side of ending treatment.
Melanie: How do you identify the needs of cancer survivors? What are some of the late and long-term effects in survivors and things like depression, or as I mentioned in the intro, lymphedema, neuropathy, any of these things? How do you identify it after their treatment ends? Is there follow-up? How does that all work?
Jaimie: That’s a really great question. So, typically, we are – the physicians, the oncologists will meet with the patient and discuss at the end of their treatment a plan for follow up. And at that time, oftentimes, the patient is given what is called a survivorship care plan. And a survivorship care plan outlines the course of treatment that the person has had and in it will identify possible problems related to the treatment, long-term side effects. During that appointment, when the plan is given; it gives a person an opportunity to ask questions about symptoms they might have, and we also will screen this patient for distress. An oncology distress screening tool is given to patients at that survivorship appointment and in that tool, we ask about emotional responses. So, if they are feeling depressed or anxious; they can let us know and scale that feeling from one to ten. So, a lot of how we learn about problems is going to be how a patient reports it. And the opportunities to tell us that would be either at that survivorship appointment or at future follow up appointments that the doctor will designate when they would like to see you again. So, if the patient is distressed and they do have emotional concerns, depression, anxiety are kind of common; then a social worker often would see a patient and address those problems by offering resources for support and further assessing those emotional concerns.
Melanie: So, tell us about some of those resources for support and what do you provide at The Christ Hospital Cancer Center?
Jaimie: So, with regard to emotional support, our social work team is clinically trained to assess and assist with counseling. Oftentimes, we would refer to an organization to help with further counseling and speak further with physicians on possible medications or treatment needed for those emotional concerns. And so, we work directly with some organizations in the local community. The one for example is Cancer Family Care. They provide individual counseling for patients going through cancer treatment and survivorship as well as family members too. So, a referral to that program would not be uncommon. We often refer to programs like Cancer Family Care. So, that would be one way to take care of the emotional side of things.
But there are other programs we offer to help manage other symptoms and for example another very, very common symptom patients have is cancer fatigue. Fatigue can strike during treatment, it could be after treatment; but those are common – that’s a very common side effect. So, we offer a cancer fatigue program that is run by our physical therapy department and a licensed physical therapist would evaluate a person and then recommend an exercise program to help manage that tiredness that a lot of patients in survivorship are burdened with. And a lot of these symptoms, including fatigue, what it does is it impacts someone’s ability to get back to the life that they wish to live. So, the fatigue program is going to help bring someone back to that level of how they want to function. So, that’s one program example another one would be our lymphedema program. Again, through our physical and occupational therapy services at Christ Hospital; a lymphedema certified therapist would do an evaluation and give options for lymphedema which is swelling of the arm or leg based on lymph node removal. And that’s a referral from a physician to that occupational therapist to do that evaluation, but it is another option to help manage the symptom that can impact quality of life after treatment. In addition, we offer free weekly classes; yoga classes that focus on cancer survivors and those undergoing treatment. These classes are a great way to help individually combat some of the common symptoms such as fatigue and anxiety and our yoga therapist is trained to work directly with cancer patients and does such a wonderful job with patients individually and in the group setting. It’s another great addition to our survivorship program for cancer patients.
Melanie: So, as long as you are mentioning occupational therapy and physical therapy; there are other types of care involved in the survivorship program. Does this involve a real coordination of care between providers and between the providers and the patient themselves? Speak about some of the other types of support that are necessary in survivorship, maybe financial guidance, helping to pay the medical bills, negotiating those life changes you know, work and disability related questions. They have so many things that could be involved in an all-encompassing program.
Jaimie: Yes, yes it does definitely takes a team and it starts with the physician and open communication from a patient to the physician about the problems that you are facing as a patient living in cancer survivorship post treatment. And then from there, the team is ready to support the patient and that would be through our social work team addressing emotional and supportive needs, including financial problems. Financial problems are a really common issue, not just because of the medical bills; but because usually when you are undergoing cancer treatment; you might have had a change in your ability to work during treatment. So, your income has been impacted. So, to get back to stability; it takes some extra resources and tools and we also have financial advocates who have been helping patients along the way during treatment that are available in survivorship to help, if needed with any other medical bill related needs.
The navigators that we have in our program are specialized in a particular kind of cancer and can offer additional education and referrals to these kinds of programs within The Christ Hospital and the larger community. And so, together, with the oncologists, that team works side by side to make sure that the patient’s needs are met in survivorship. And beyond that, we offer peer support. So, we know that a lot of times patients learn from each other and their experiences and so there are a couple of different ways that we are trying to connect survivors to each other. And one of those ways is a programmatic educational session where we invite survivors back to the Christ Hospital in a group format to have educational subjects presented to them on topics that matter to them. And we also have launched a private Facebook support peer to peer support group for cancer survivors of The Christ Hospital to connect to each other.
Melanie: So, for other physicians that are looking to this survivorship program, how do you evaluate the impact of the program on outcomes and how are you looking at the patients down the line and saying you know this really did work?
Jaimie: So, that comes in an individual way as we are assessing patient’s outcomes and their symptoms and if they are resolving symptoms or if they are feeling their symptoms have been addressed. In addition to that, we are offering a what we are doing on an ongoing basis is serving our patients in an informal qualitative way to ask our patients what they are facing and how – and when we learn that, we are able to refine our program to know better what we need to do to build to help support them. So, asking what kind of symptoms they are living with, what kind of concerns they have in survivorship and that way we can continue to modify our program and address currently with what our patients are facing and how they report it to us in those evaluations.
Melanie: That’s so important and so in summary Jaimie, please tell other healthcare providers what you would like them to know about cancer survivorship resources at The Christ Hospital Health Network and when to refer.
Jaimie: The survivorship resources are a continuation of our cancer support services throughout treatment. And it is refined more specifically in cancer survivorship knowing what we do about the commonalities of problems faced and the best way to refer someone to any of the cancer support services that were mentioned and others that we offer would be to either contact myself or email us and we would be able to direct the patient to these programs individually. Some need medical referrals and we would be able to let the physician know. Some do not. So, we would be able to navigate with the patient the next steps or with the physician the next steps.
Melanie: Thank you so much for being with us today. You’re listening to Expert Insights, Physician Views and News with The Christ Hospital Health Network. For more information please visit www.thechristhospital.com/cancersupport , that’s www.thechristhospital.com/cancersupport. More information on all of The Christ Hospital physicians is available at www.tchpconnect.org . This is Melanie Cole. Thanks so much for listening.