The Special Focus
As of 2015 American College of Surgeons has required that hospitals provide a survivor care plan for all patients treated for cancer. We will provide background on the 2006 Institute of Medicine (IOM) report that gave rise to these 2015 regulations.
- Define cancer survivorship and important post-treatment concerns of survivors.
- Name the decisions and events that led to new national standards for survivorship care plans.
- Describe benefits and key components of an effective survivorship care plan.
- Outline practical ways for health care providers, family caregivers and cancer survivors to optimize the benefits of survivorship care plans.
- Explain how the use of non-medical home care positively impacts cancer survivorship and care planning.
- List resources that can help with creating a cancer survivorship care plan.
Meredith: My name is Meredith Collins, I’m with Griswold Home Care. Today’s webinar title is Navigating Cancer Survivorship. Here at Griswold, I’m the director of learning and development, so I’m in charge of all national webinar and Solution Series CE Program. I’m delighted to have Jane Hamilton with us today. She’s partnering with Griswold Home Care to help create and present today’s webinar. So let me take a minute to introduce Jane for you. Jane has been a nurse for over 40 years. She’s a family caregiver for 20. In 2008 Jane started Partners on the Path which is a company to provide resilient building resources for professional and family caregivers. Welcome, Jane.
Jane: Thank you.
Meredith: Now on to cancer survivorship. The reason we chose today’s topic is because today more than 14 million Americans are battling with a history of cancer. We hope that today’s presentation shares with you lots of resources and information to help those grappling with cancer and it’s challenges. Before we get started I have a couple of housekeeping items I’d like to review. First being that all phone lines are muted. The second being that we will have plenty of opportunities throughout the presentation for the audience to interact. We’ll also have a formal Q and A session at the end. This is going to be through the Brain Writing Tool which Jane will discuss later. Lastly the presentation recording as well as the tools and links will be provided to all registrants at the end of the presentation within a few days. This will be provided via email so stay tuned. So without further ado, I’d like to turn it over to Jane.
Jane: Thank you very much, Meredith and I am absolutely delighted to be here today. We are going to be talking about cancer survivorship and I’d like to start with this quote by Dr. Fitzhugh Mullan who said in 1985, “It did not occur to me while I was actually ill or for some time afterward, that the simple concept of sickness and cure were insufficient to describe what was happening to me. It was survival, an absolutely predictable but ill-defined condition that all cancer patients pass through as they struggle with their illness.” So many years ago this quote was the start of the concept of cancer survivorship. Before we get into our content, I’d like to acknowledge those who are participating in today’s webinar who are professionals, cancer survivors, and family care givers. Each of you plays a vital role in helping those with cancer face the challenges of this disease and live to their fullest. We at Griswold Home Care thank you and we honor your courage, energy, and dedication. We know the journey through cancer treatment and survivorship is not easy. It takes a toll on body and mind, heart and soul, on finances, family, and sometimes even on work life. That’s why we’re presenting this webinar on navigating cancer survivorship. We’re delighted that you’ve joined us.
During this webinar we’ll focus on five objectives. First I’ll define cancer survivorship and important post-treatment concerns of survivors. Next I’ll name the decisions and events that have led to new national standards for survivorship care plans. I’ll describe benefits and key components of an effective survivorship care plan and I’ll outline practical ways for health care providers, family care givers, and cancer survivors to optimize the benefits of these survivorship plans. Finally I’ll list resources that can help with creating a cancer survivorship care plan. As Meredith mentioned earlier, we have a great activity called Brain Writing that we do throughout this webinar. I’ll be asking questions at various points. So when I do, a brain-writing allows this to become an interactive process. You can respond in real time instead of waiting until the very end of the seminar. There’s a brief tutorial right here on your screen. Look for the orange button and a white arrow on the top of your screen. When you have something to communicate you can click that arrow and you’ll see a chat bar. In the chat bar you can share your thoughts, questions, experiences, or comments. I’ll let you know as we go through when we have a brain-writing activity.
So here’s our first one. How would you define or describe cancer survivorship? What images come to mind? I’ll pause just a moment while you think and contribute. So let’s get started on the topic. Leaders in the world of cancer have provided several definitions of survivorship. It’s the process of living with, through, and beyond cancer. By this definition cancer survivorship begins at diagnosis. It includes people who continue to have treatments to either reduce risk of recurrence or to manage chronic disease. If following diagnosis everyone is a cancer survivor, to get greater clarity leaders have defined that there are three distinct phases associated with cancer survival. First is the time from diagnosis to the end of initial treatment. Second is the transition from treatment to extended survival. Third is long-term survival. In common conversations, however, the term survivor is often used to mean someone who has actually finished treatment. So why is the definition of survivorship important? This graph shows why, first by illustrating the growing number of cancer survivors who are alive in the U.S. The number of people with a history of cancer has increased dramatically from three million in 1971 to about 14 and a half million today. Those numbers are projected to approach 18 million by around 2020. In the United States half of all men and one third of all women will develop cancer in their lifetime. The increase in survival rate is thought to be due to four developments. First, improved identification of cancers through screening. Second, improvements in treatments. Third, more effective treatments of side-effects make it possible to give patients the planned doses of cancer drugs. Fourth, the development of new treatments.
Cancer survivors are living longer and represent a growing population. Let’s see about living longer. This graph shows survival rates for those who are diagnosed with cancer. Break down on the graph starting at the bottom we can see the orange bars show those who have survived a year or less. The red shows those who have survived between one and five years. The green bars show those who have survived five to 10 years. The purple segments are those who have survived between 10 and 15 years. At the top of each bar of the graph, the turquoise element shows those who have survived 15 or more years. What we can notice by looking at this graph is that the numbers in each category are steadily growing and they are expected to continue growing. Over the next decade the number of people who have lived five years or more after their cancer diagnosis is projected to increase approximately 37% to almost 12 million people. Let’s look now at how the importance of this issue has emerged over the past 50 years. We’re going to map the evolution of cancer survivorship starting in 1960 when only 25% of cancer patients survived five years or more. What that means is that 75% who were diagnosed with cancer did not survive beyond five years. At that point in time, cancer was considered a terminal illness.
We’re seeing a very different picture today when people are living much longer following diagnosis. According to the American Cancer Society about 68% of today’s cancer survivors were diagnosed with cancer five or more years ago. Moving along to 1985, Dr. Mullan who I mentioned earlier wrote an inspiring and Earth-changing editorial in the New England Journal of Medicine about his own cancer experience that began when he was a 32-year-old physician, husband, parent, and son. He was first to describe survivorship in it’s phases. In his terms it started with first acute survival that began with diagnosis and went through treatment. His second stage was extended survival or remission and post-treatment time. Then his final stage, he called permanent survival, which evolved over time when you know that cancer is permanently arrested. The thing that’s important is how revolutionary his words are and how they galvanized action on behalf of cancer survivors. The following year, 1986, based on the energy that came from his article, the founders of the National Coalition for Cancer Survivorship or NCCS set out to establish a group that would replace the words “cancer victim” with “cancer survivor.” And they wanted to bring about a different notion of the cancer experience. These were the first advocates for cancer survivors. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through, and beyond diagnosis.
In the years 1995 and ’96, 10 years later, the NCCS developed a report and recommendations called Imperatives for Quality Cancer Care. This was the first report to approach quality cancer care from the patient and survivor’s perspective and it provided emphasis that led to the creation of the a National Cancer Institute Office of Cancer Survivorship. That began in 1996 and is a tremendous source of support and information in the world today. Ten years later in 2005 the Institute of Medicine and in partnership with the National Research Council, published a piece called “From Cancer Patient to Cancer Survivor: Lost in Transition.” This document recommended that patients with cancer who are completing the first course of treatment be provided with a comprehensive care summary and a followup plan that’s clearly and effectively explained. This is the first mention of a cancer survivorship care plan. The recommendations suggested that these plans would help survivors who otherwise might get lost in transition from treatment through the phases of their life or stages of their disease course.
Ten years later here we are in 2015 and Standard 3.3 outlined by the Commission on Cancer which is an accrediting body now requires that all organizations, hospitals, and comprehensive cancer centers that treat cancer patients provide cancer survivorship care plans to help improve communication, quality, and coordination of care for cancer survivors. As we look beyond 2015 and look back on the statistics that we just saw, increasing number of survivors who are living longer as cancer survivors are the population on which we’re focusing. Cancer will increasingly be managed as a chronic condition, not as it was in the 1960’s, a terminal diagnosis. In the years following treatment survivors often experience long-term side-effects. These are also known as late effects of cancer and it’s treatment. Based on factors such as the type of cancer, the stage of cancer, and age at diagnosis, the treatment for cancer will vary and so do it’s after effects. Some common late effects of cancer are presented here. First of all is fatigue. The physical, emotional, or mental exhaustion that is unlike common fatigue that you and I feel as a result of over exertion. This fatigue is the most common of all late effects that cancer survivors experience and can last for months or years after treatment.
Emotional distress takes various forms. It can be sadness or depression, loss or grief, anxiety, fear of recurrence or death, or disturbed faith or spiritual lives. While some cancer survivors struggle with negative emotions there are also a group of people who feel renewed and positive as a result of having gone through this challenge. The third set of late effects are cognitive challenges. These include difficulty concentrating, learning, remembering, finding words, completing tasks, or solving problems. This is not just the chemo-brain that we hear so much about, cognitive changes that result from chemotherapy, but these can come from other types of cancers, other types of treatments, medications, emotions, and some physical conditions other than cancer. Physical problems are another set of late effects and these are widely experienced but vary among survivors. The physical side-effects commonly experienced can be pain or neuropathy. We can see sexual dysfunction or infertility. There can be higher risk of serious infections or lymphedema which is a common side-effect for breast cancer survivors. We can see hormonal changes that lead to infertility, menopausal symptoms, or cardiac problems that lead to chest pain, increased risk of stroke, lung problems, or less effective lung function.
In the GI system we can see tissue scarring as a result of treatment that leads to chronic pain, digestive problems, diarrhea, malabsorption of foods, nutrients, and weight loss. Also dental problems like the erosion of tooth enamel, gum diseases are not uncommon as are peripheral neuropathy and pain which I mentioned earlier, cataracts, and hearing loss. The final two late effects are second cancers. All cancer patients wonder if their cancer will return. Possible ways it could would be in the form of new primary cancer or recurrent or metastasis of the original cancer. Finally the last set of late effects are social disruptions. Cancer and it’s treatment leads to a quote “new normal way of living.” Changes in roles, relationships, and lifestyle. These changes are things that can disrupt family and friends, they can disrupt work life. Cancer survivors deal with a variety of employment issues, insurance problems, debts, and sometimes experience cancer-related stigma or discrimination.
So let’s move on and talk about what are some of the positive benefits of managing survivorship? Well I think it’s really very clear that when we manage our after effects of cancer and it’s treatment we are able, through self management, to make better, more well-informed decisions. We can improve our problem-solving that’s based on getting access to the best information available, and these lead to improved outcomes for survivors’ physical, emotional, and social well-being. Despite adapting to a new normal when survivors assume the role of managing their survivorship journey rather than passively depending on others to be in control, they experience a better quality of life, a sense of empowerment that comes from active engagement both for survivors and care givers. Finally a sense that they are living as fully as possible in this new normal. It’s not an easy journey, certainly. Roadblocks that survivors encounter include those late effects that we just examined. Fatigue and physical symptoms can make it hard to muster the energy to be the driver. Emotions can sometimes lead to a lack of confidence. “I’m not sure how to handle things.” Health disparities can be a roadblock in managing survivorship. Some racial and ethnic minorities as well as those who are financially disadvantaged can find it difficult to get the followup care that they need.
Other road blocks include old views of the doctor-patient relationship. Thinking maybe the doctor knows best and consequently taking a less active role in self-management. Or some clinicians may not actively encourage self-management in their patients, suddenly withholding support. Family and friends may not support that driver role and could be afraid of hoping for too much or reluctant to see their survivors act too assertively. Finally a survivor may not really feel comfortable with the skills of self-management. So I’ve been talking about the concepts related to cancer survivorship, let’s hear from someone who’s actually lived this and it’s my pleasure at this point to introduce Karen. She is a colleague and a friend of mine who is a breast cancer survivor and who has been cancer free, I’m happy to report, for five years. Welcome, Karen.
Karen: Thanks, Jane and thanks for inviting me to this program.
Jane: Oh, thank you for joining us. I wonder if you could spend a few moments and tell us a very bit about your story as a cancer patient and a survivor.
Karen: Sure. I’d be happy to. I am a five-year cancer survivor as Jane mentioned, December 22nd but who’s keeping track? I don’t know. When I was first diagnosed, it was about six weeks after my job position had been eliminated. So right there, I experienced financial stress in addition to being sick as Jane had talked about all the different stressors that go into having cancer. I had breast cancer and as Jane also said I had surgery, I had 24 weeks of chemotherapy, six weeks of radiation, and I had cancer in the lymph nodes. For the clinicians in the room it was stage 2B. So I got treated like I was stage 3 but that’s okay. I was better to go through it and get done with it and check that box. Along the way I had a few challenges. I had some problems with skin reactions and things and I had blood clots that I had to deal with but overall I did pretty well and came out on the other side. Now doing all of my followup appointments and trying to stay on track with everything they’re telling me to do.
Jane: So if you’re doing the followup appointments then it sounds like you are managing your survivorship?
Karen: I am. I’m a little more tired than I used to be and I have more doctor appointments than I ever had. But that’s okay because once you’ve been through something like this you just want to stay on top of it.
Jane: Yeah. In addition to the fatigue and some of the physical symptoms, did you experience any of those other long-term effects like cognitive changes or emotional issues or social disruptions?
Karen: Well, I had some depression when I came back after being through it. I think you’re surviving your cancer treatment on adrenaline. So I had a little bit of that to deal with.
Karen: I’ve had some memory recall issues or chemo-brain but I’m working with my doctor on that and trying to get more sleep and that seems to be helping. I developed a pretty significant case of lymphedema in my right arm and that takes physical therapy, wrapping, massaging, and all of that every day. Then the funniest thing is, because none of these other things are really funny, but this one is. I developed white-coat syndrome so…
Jane: Oh no.
Karen: I don’t feel stress when I go to the doctor but my blood pressure goes up about 40 points every time I walk into my cancer treatment facility.
Jane: That’s not good.
Karen: But that just tells you, cancer patients actually, they might feel like they’re through it and everything and then all of a sudden, they’re seeing… after they go for their checkup they feel so relieved.
Jane: Yeah. I can imagine.
Karen: Never felt stress before the appointment.
Jane: Yeah. Yeah.
Karen: It was there apparently.
Jane: So, thank you for sharing your sort of new normal and your experience. I’m going to sort of draw this back to a few concepts now and we’ve seen how important it is to manage survivorship. Let’s look for a moment now at the standard that has been devised to help patients, organizations, and clinicians to manage survivorship. It’s called Standard 3.3 and it was created by the American College of Surgeons. It is a requirement for all health care organizations, hospitals, and cancer treatment centers. It requires two things that first they provide a comprehensive summary of the cancer care or treatment that has been given and second that they provide a followup plan to help patients manage survivorship. There is a committee in the hospital or cancer center that must design and implement a process for that organization. They must stay on top of it, evaluate it, and report on it at least annually. They have to have facts about it in their committee minutes. So let’s look at this cancer survivorship care plan and I’ve got a couple of frequently asked questions that can help us to come to understand what this is all about.
So the first question is who prepares this plan? The writer is usually the treating physician or physicians or their advanced practice partners, an advanced practice nurse or a nurse navigator. The person who owns it is the patient. They’re the ones who have a copy. When is this cancer survivorship care plan written? The standard tells us that they should be written at the completion of active treatment. How is the survivorship care plan created? The process goes like this. First cancer treatment that has been received is summarized when active treatment is finished. Secondly this is ideally done by those professionals, as I mentioned, who coordinated treatment and it can be done in either electronic or written format. Some care plans can be developed by patients but often these do not have the same details related to the treatment history that comes from those written by those who are professional. The final question, what are essential components of a survivorship care plan? The American Society of Clinical Oncology has identified a data set that would be considered the minimal content for treatment summaries and care plans. This is the baseline that they all have to include. A treatment summary first of all has details about the cancer diagnosis, names, and contact information of the providers in the treatment facilities, the treatments that were administered, chemotherapy, biotherapy, radiation, surgery, et cetera. These are all documented in the treatment summary. The second part, the followup care plan, provides specific recommendations for ongoing care. This includes surveillance, screening, and health promotion ideas.
So why is a survivorship care plan important for cancer survivors and their families? The 2005 Institute of Medicine Report that I mentioned earlier found that cancer patients are generally not well enough educated about long-term side-effects of treatment, possible recurrences, surveillance methods and screenings, and the phase of survivorship. So survivorship care plans are really designed to raise awareness and knowledge about each of these issues highlighting the importance of lifetime monitoring and followup for each and every cancer survivor. The survivorship care plans also draw together that team who supports cancer survivors. Clinicians, home-care providers, and family members. Cancer survivors cannot manage survivorship alone and the survivorship care plan underscores the importance of each team member’s contribution. So at this point, Karen, I’d like to come back to you once again and at this time I’d like to hear your thoughts on survivorship care plans. I wonder, have you used a care plan in the five years that you’ve been cancer free and can you describe how you might have received or used it if you did?
Karen: Yes, I have had a care plan and I received it in two ways. One is I received it verbally in my followup appointments but then also I received it in writing with a specific summary of the appointment that I’d had on the findings and then the treatment plan for the next several months so that I would know what was coming ahead. That was really great to have.
Jane: For you what seems to be the most important aspect of that care plan?
Karen: Well, when you’re going through cancer treatment many times you’ll have a family member, friend, care giver, or something with you to help you remember all of these things. You’re getting a lot of information in a short amount of time on these followup appointments and now you’re in survivorship so you don’t necessarily have somebody with you. So it’s really great to have something to refer back to that’s in writing.
Karen: It helps me keep my meds organized. When am I going to come back? What do I need to talk to my primary care doctor about? What blood work needs to be done? Those kinds of things.
Jane: So it really helps you stay on top of what you need to do.
Jane: Have you shared your care plan with either your primary care providers or other doctors you’ve seen?
Karen: Well yes, in my case my cancer treatment center, MD Anderson, shared it with my primary care doctor directly. Every single piece of paper that they wrote, the test results, et cetera, treatment plan, they shared with him.
Karen: But also I’m able as a patient to log in and print out everything that I need. Test results, my clinical summaries, and everything.
Karen: In fact I have done that and I have taken it to other doctors that I needed to see for followups on various different things and they loved it because they could just…
Jane: Oh, that’s great.
Karen: It was really written, so that it’s not just for me but it was also written so that they could look at it and get the information that they needed.
Jane: That’s great. Do you know other cancer survivors who have not had a care plan as good as yours?
Karen: Oh, I’m sorry. Go ahead.
Jane: I was going to say, and if you do, did it affect their survivorship?
Karen: I do know some folks that haven’t had a good care plan like I’ve had and I think that for them there’s frustration because they don’t feel like they’re not getting the information and the staff… the doctors and the staffs are so busy focusing on the next set of patients, which is appropriate… one of my friends, it’s been very difficult for her because it’s not been written down and she doesn’t have people to go with her to the doctor as she did when she was sick. So it’s been a challenge for her.
Meredith: So I hear you saying that having the care plan… Karen this is Meredith, sorry… having the care plan helps you feel more supported whereas someone who doesn’t have a care plan may not feel as supported by the clinicians that are on their team.
Karen: That’s exactly correct.
Jane: Yeah. That’s great. Well for those who are listening in in addition to Karen, I have another brain-writing opportunity for you. My question for our other listeners, what has been your experience with a survivorship care plan? So at this point, Karen, I’d like to thank you for your contribution and I’d like to move on to summarize why is this important and Karen has shown us so well why it’s important and beneficial to cancer survivors. But there are benefits to professionals that you mentioned in your comments, Karen, to oncologists and advanced practice nurse navigators to primary care providers, nurses, social workers, and home care aides. These plans provide very helpful guidance on clinical care of cancer survivors by first of all outlining how to manage those late effects by highlighting what signs of recurrence or what second malignancies need to be watched for, by offering recommendations on screenings and followup care. The survivorship care plan improves the quality of followup care. I think you show that very clearly, Karen.
By providing this valuable clinical information to primary care providers, people who are not really oncology specialists and may not be as well informed about the needs of cancer survivors as are oncologists. But these days many cancer survivors are being followed up by primary practitioners. Survivorship care plans also benefit professionals by alerting them to the health disparities that impact cancer survivors. Research shows that disparities in health care actually do impact survival. Racial and ethnic minorities, the uninsured or under-insured, people who live in rural areas, and elderly patients are all at risk. The American Cancer Society has defined that these populations need special attention. A survivorship care plan can be a tool to help professionals better manage the needs of these patients.
So let’s now look at some specific care plans and tools that you may want to examine. What we’re looking at here is a screen shot of the American Cancer Society’s website. In response to the 2006 Institute of Medicine Report, many groups have now developed care plans to help survivors and the American Cancer Society provides easy links to several survivorship care plans. If you’d like to, the easiest way for you to compare plans is to search the American Cancer Society website for “survivorship care plans landing” and if you type in “survivorship care plans landing” on the website, you will come to a page that has active links to various tools. Here is one that shows up and this is called “What’s Next? Life After Cancer.” It was developed by a group in Minnesota and it is a 24-page booklet that’s very nicely laid out with plenty of space to write in the necessary care plan information. This, Journey Forward, is one that’s to be completed by the physician. This survivorship care plan builder is free. It’s an award-winning online tool to help oncology professionals create unique plans for each of their patients. These can then be printed out, emailed, and/or stored electronically. The plans on this site will include contact information for the patient’s care team, and this is important for coordinating care.
It also provides background information on the patient’s diagnosis and medical history, the treatment summary, the followup care schedule, referrals, and other recommendations for future care. It provides an assessment of the patient’s ongoing concerns and suggested interventions. In addition there are fact sheets. This is a very rich and well-developed site. This, in contrast, is called Prescription for Living. This tool is not online but it is something that can be downloaded and completed by cancer survivors. It was developed as a collaborative effort by nursing leaders and it includes general information about dates and information about when treatment was held, symptoms at presentation, history of the cancer treatment, the surgery, radiation and chemo, transplantation, or other interventions. It gives a place to record significant events during treatment, weight gain or loss of more than 10 pounds, any CPR or bleeding event. Psychosocial events that need treatment like significant depression or anxiety and toxicities that the patient may have experienced.
Another resource that I’d like to highlight is Penn Medicine’s OncoLink. This is a website run by Penn Medicine and this site provides over 75,000 documents and cancer resources for both patients and health care professionals. It deals with all stages of cancer from diagnosis and screening through treatment and followup. It is available in both English and Spanish versions. It is a very rich resource that I highly recommend to you and on the OncoLink site is this Live Strong care plan. This free, easy-to-use program provides adult cancer survivors with information regarding the health risks they face as a result of cancer therapies. This is important to note, this is not one of these survivorship care plans but this care plan, and it’s not a treatment summary, although the site does provide a link to treatment summaries if that’s what you’re looking for. There is an example on this Live Strong website to see a completed care plan so that you can get an idea of what it looks like. I clicked on it and saw a 14-page long document that identified what I was treated for, suggestions for coordinating care, risks related to medications, possible long-term side-effects, guidance on healthy living, and recommendations for followup care and screening. So this is a rich tool that I recommend you check out and also from Lance Armstrong’s Live Strong Foundation is the Living After Cancer Treatment Brochure series. You can see a picture of the different brochures. This collection introduces survivorship in a way that is culturally relevant. These brochures are user friendly. They’re easy to read, and most important they’re free of charge.
A general multicultural brochure is the template and this one is adapted for different audiences. All of them contain the same basic content but they are presented in a way that addresses the interests and the needs of a specific audience. So there is an African-American version, a Hispanic version, one for Native Americans, adolescent and young adults, for Appalachian population, and then Asian-American group, Pacific Islanders, Arabic, Chinese, Vietnamese, and the LGBT community. So various languages are prepared in, written in that language and so are easy for those different populations to read. I highly recommend these. Finally here is a link that I encourage you to check out. This is a 17-minute video which you can find on YouTube. It’s titled “From Cancer Patient to Cancer Survivor: Lost in Transition.” And it is based on the Institute of Medicine report which I mentioned earlier. It shows real, live people talking about the problems that they’ve experienced as a result of being a cancer patient and they talk about what they encounter after treatment successfully ends and what to look for in followup. For you who are professionals I recommend this to you as a great tool if you want to address the issue of cancer survivorship with your patients or clients.
As we’ve seen there are great tools available for creating survivorship care plans and for supporting survivors through the post-treatment phases. The plans and the resources have many benefits but there are also some roadblocks to successfully implementing these plans. These roadblocks include first a lack of information. Survivors may not even know about survivorship care plans and they may not have enough information to document their treatment plan so they may need help. Cancer hospitals and cancer programs themselves may be unclear about what elements they should be including in the survivorship care plan that their organization provides. It takes them a while to develop their version. Professionals may be unclear about what is required of them under Standard 3.3 and they may lack the knowledge about those emotional, social, financial, legal, or insurance aspects that are related to the social after-effects of cancer. A second roadblock to survivorship care plans is a lack of resources. Oncology professionals have very little free time. They are really busy and so some may find that survivorship care plans don’t seem like a good use of their time. We also know in terms of resources that some research has shown survivorship care plans may not be cost effective. We’re still looking into that one. Survivors also lack resources sometimes in terms of online access and may have a hard time accessing hard copy tools. Those in specific populations that experience health disparities in cancer care may receive less benefit from survivorship care plans.
Finally, lack of confidence is a roadblock. Cancer programs, health care professionals, and survivors alike may not be confident in their ability to create and benefit from the use of a survivorship care plan. So how do we move past these roadblocks? Well, we can move past them by first of all learning the latest about what Standard 3.3 requires. Information is available on the American College of Surgeons site and, I want you all to hear this, based on feedback from oncology leaders, Standard 3.3 will now be slowly phased in between January of this year, 2015 and January 1st of 2019. Giving people time to learn how to work with these plans. Did I say 2019?
Meredith: You did.
Jane: It’s supposed to be, between 2015 and 2019. Yeah, so we now have time to get used to this. Another strategy for overcoming the roadblocks is to become familiar with the various tools. Many have been presented here during this webinar and again I encourage you to visit the American Cancer Society’s site to link to a variety of tools. Another strategy is to work with others to move towards a more comfortable ability to use survivorship care plans. Professionals can’t do this alone, leaders of hospital programs and cancer centers need to work to develop what will be feasible within their setting. Survivors and clinicians should contact local leaders to learn what is being done by the program where you work or where you get treatment. It’s also important to gather data about survivorship care plans. Get to know what works and what doesn’t by eliciting feedback from survivors who like we have from Karen today or oncology professionals and primary practice providers you know.
You can also, by the way, search the internet. Just Google quote “effectiveness of survivorship care plans” and you can get a lot of information that way. Finally a strategy for overcoming roadblocks involves building your skills. If you’re a survivor or family care giver you’re responsible for life-time monitoring. So develop your ability to be assertive advocates and to actively manage survivorship. If you’re a primary practice provider you’re increasingly responsible for cancer patients’ followup care so develop your ability to manage survivorship issues with your patients and your ability to recognize and address those racial and ethnic disparities in cancer care. Finally if you are an oncology professional you have expertise that others need, that others rely on, to assure quality patient care so develop your ability to promote care coordination and to promote survivor’s self management behaviors. Develop your ability to lead efforts that address the needs of populations with disparities in cancer care. We’ve covered a lot of information.
Meredith: That was quite a lot of information, Jane.
Jane: So what I’d like to do is to just highlight what I’d like you to be sure to take away with you today. First of all cancer survivors are a growing population who have significant needs. Survivorship care plans seek to address those needs. They’re now a standard of care required by all cancer programs and cancer hospitals, and this requirement is being phased in again beginning now in 2015 with complete implementation due by January 1st of 2019. These plans benefit both cancer survivors and health care professionals providing practical guidelines for followup care as Karen so beautifully illustrated. There are many valuable resources available to support the use of survivorship care plans and we’ve looked at many of them during this session. Finally, whether you’re a health care professional or work in home care, if you’re a survivor of cancer or a family care giver, each of us has a role to play in supporting cancer survivors. I hope the ideas and the tools we examined during this webinar have proven useful and that you’ll go back and check them out. A survivorship care plan will definitely improve communication, quality, and coordination or care for cancer survivors who so need these things.
Meredith: Wow, Jane. That was awesome. Thank you so much.
Jane: You’re welcome.
Meredith: So we’re going to take a minute to check out your questions, so if you haven’t already done so please go ahead and enter some comments, feedback, or questions that you’d like us to circle back with you on. So we’re going to mute the phone line for a minute here and we’ll be right back. Okay. So we have some questions from the audience. So one person writes for Karen. It seems like you’re living a new normal. How did that feel? How does it feel to have to make that change?
Jane: Can you join us, Karen? Thank you.
Karen: Can you hear me, Jane?
Meredith: Yes, we can.
Jane: Yes, that’s great. Thank you.
Karen: Okay. Great. It’s great. I couldn’t be more excited and happy to be a survivor. Yeah, I have new challenges that I have to deal with, that I didn’t have to deal with in the past. But I’m happy to be alive and happy to have such a great care team that helped me through it and are still standing with me and friends and family. So yeah, I mean you adjust and just keep going on.
Jane: Thank you.
Meredith: Awesome. Thank you. Hold on one second, we’re getting another question. Hold on. Okay. We have another question.
Jane: Somebody wanted us to talk about what are the pitfalls of trying to use a survivorship care plan. I’m wondering, Karen, do you have any thoughts on pitfalls of using one of these plans?
Karen: I honestly can’t think of… I mean there is… medical organization has to make those treatment plans accessible to the patient. So maybe, from the other side of the table, it’s just another documentation piece that has to be put into place. From the patient perspective I don’t see any downsides at all. Like I said, I think the biggest upside, not only do I know and have something solid to hold onto that I can see, read, and have and if I were sick my family could have access to it if I wanted them to.
Karen: But, the other point of… I can just go online, print out, I’m going to the dermatologist, I’m going to print out what the dermatologist during cancer treatment said and take that report with me. Eventually perhaps will all be connected but you can’t find on time.
Jane: Going along with what you’re saying that you don’t see any downside, the research has shown that even for the professionals who are wondering about where they’re going to find the time to do all of these things, they still sense that having this care plan is a good thing. So I think the pitfalls will hopefully be worked out.
Karen: Yeah. Yeah. Absolutely.
Meredith: Yeah, and I think that-
Jane: No, no, go ahead.
Meredith: I was just going to say, I think in the case of MD Anderson they made the decision some years ago to go into this open notes documentation so they’re documenting anyway. So then they just opened it up to patients through a portal.
Meredith: Yeah. Yeah. We have time for one more question, just hold on one second. Okay. We have one more question about copies of the hand-out. As I mentioned earlier, the course material as well as the hand-outs and the links will be sent via email to all of the registrants on the webinar today. I’d also like to say that this content is going to be accredited for a CEU so if you have interest in getting three hours of CEU credits if you’re a nurse, social worker, or nursing home and assisted living administrator, please contact your local Griswold office territory to get more information on how you can redeem that CEU. But as far as the PowerPoint when the slide pack is emailed to you, you should have the ability to click on the hyper-links that are in the presentation and download the resources and tools right from there. So before we close I wanted to get out of the question and answer section, so hold on one second.
Okay. So if we didn’t get to your questions feel free to email me at meredith@GriswoldHomeCare.com. I’d like to take a moment to thank Jane for all of her effort in putting today’s material together as well as Karen for sharing a very personal battle with us. So I thank you for your courage and being willing to do that for us today, Karen. Jane that information presented was invaluable, very informative, and I’m sure that all the tools and resources that you provided the audience will be great takeaways. But before we close I wanted to talk to you a little bit about Griswold Home Care. We are a non-medical home care company and we’ve helped hundreds of thousands of individuals stay safe and independent in their home. Our founder, Gene Griswold started the company out of her own home when she saw the need in her husband’s parish… for elderly individuals in her parish who received non-medical home care companionship, personal care, home-making services are the types of services that we provide.
If there is something that you’re interested in, if you know someone who needs those types of services, feel free to reach out to me or contact us at 1-800-GRISWOLD or www.GriswoldHomeCare.com and we’ll be happy to get you in contact with one of the local directors in your territory. Jane and I would like to thank the audience for your participation and attention today. Again I think that all of the resources that Jane provided as well as the personal touch of Karen’s story is hopefully going to be invaluable to you as you go back into your professions and apply this information to your work life. So that concludes our presentation for today, if you have any questions again please contact me with my email address, Meredith@GriswoldHomeCare.com. Thanks everyone, have a great day.