Cancer-Related Fatigue Webinar
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eeling worn out and exhausted all the time? You may be experiencing cancer-related fatigue. Tune in to this webinar to learn what cancer-related fatigue is, how to spot it, and how to manage it.
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Cancer-Related Fatigue Webinar
- 2. TODAY’S WEBINAR SPEAKER(S) Bram Kuiper, Michael Mancini, Amy Rosenblum QUESTIONS Ask a question in the panel on the RIGHT SIDE of your screen WEBINAR ARCHIVE FightCRC.org/webinar TWEET ALONG Follow along via Twitter – use the hashtag #CRCWebinar
- 3. RESOURCES
- 4. FIGHTCOLORECTALCANCERDISCLAIMER The information and services provided by Fight Colorectal Cancer are for general informational purposes only. The information and services are not intended to be substitutes for professional medical advice, diagnoses or treatment. If you are ill, or suspect that you are ill, see a doctor immediately. In an emergency, call 911 or go to the nearest emergency room. Fight Colorectal Cancer never recommends or endorses any specific physicians, products or treatments for any condition.
- 5. Dr. Bram Kuiper is a clinical psychologist, scientific entrepreneur and CEO of Tired of Cancer. Up until July 2017, Bram was the CEO of the Helen Dowling Institute for psycho- oncology and research. With over thirty years of experience in the field of psycho-oncology and in co-writing treatment protocols, he has now devoted his career to seeing the Tired of Cancer App help as many people as possible who suffer from cancer-related fatigue. Mike Mancini is a Stage IV colon cancer survivor diagnosed in June of 2017 at age 42. He is currently pursuing his MBA through Southern New Hampshire University while working full time managing a a team of small commercial insurance customer service reps. He is a 2019- 2020 Fight Colorectal Cancer Ambassador living in Wolcott, CT. Amy Rosenblum has spent over 10 years in the U.S. healthcare industry with a background in marketing strategy, development, and execution of healthcare initiatives. She currently works for the company Tired of Cancer as their Director of Partnerships.
- 6. Understanding Cancer-Related Fatigue This project has received funding from the European Union’s Horizon 2020 research and innovation programme under Grant agreement No. 756641
- 7. • Can cer - Relat ed - F at ig u e – t h e p ro b lem • Possible int ervent ions • Q u est io n an d An sw er Sessio n The Agenda
- 8. T H E P R O B L E M Cancer-Related Fatigue Nr. 1 side-effect of cancer and its treatments
- 9. D E F I N I T I O NT H E P R O B L E M Can cer - Relat ed F at ig u e may b e d ef in ed as* : “A distressing, persistent, subjective sense of tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning“ * NCCN (National Comprehensive Cancer Network)
- 10. C H A R A C T E R I S T I C ST H E P R O B L E M Characteristics CRF (Different from Chronic Fatigue Syndrome!) It comes sudden, without warning and usually not as a result of exertion The fatigue is often an extreme experience and seems like exhaustion The recovery period lasts longer than after a ‘normal’ fatigue
- 11. I M P A C TT H E P R O B L E M
- 12. I M P A C TT H E P R O B L E M Huge impact of CRF Physical limitations (e.g. limited radius of action) Social invalidation (e.g. cannot/less work, different role in the family, withdraw from activities) Psychological problems (e.g. anxiety, depression, poor sleep, cognitive disorders)
- 13. F A T I G U E S C O R ET H E P R O B L E M Fatigue Score (0-10) (Or Fatigue Symptom Inventory - FSI) › CRF can’t be measured ‘objectively’, it’s always the unique experience of the individual person. Incidence (score 4 - 10: moderate to severe fatigue) (American Cancer Society) Initial (first year after diagnosis) 70 - 100% Long term (often many years) 30 - 50% 0 1 2 3 4 5 6 7 8 9 10 0 – 4 mild fatigue 4 – 7 moderate fatigue 7 – 10 severe fatigue
- 14. P R E V A L E N C E 16.000.000 CRF 24.000.000 no CRF Europe and USA 40.000.000 Cancer Patients and Survivors 40% With CRF (score 4 -10) T H E P R O B L E M
- 15. Psychological/Social/ Behavioral factors • Anxiety (for recurrence) • Depression • Distress • Sleep disorder • Decreased physical activity Co-morbid conditions • Hypothyroidism • COPD • Diabetes mellitus • Cardiovasculair disease • Infections Side effects of other medications • Opioids • Psychiatric drugs • Antihistamines • Beta blockers • Corticosteroids Latrogenic factors related to • Chemotherapy • Immunotherapy • Radiotherapy • Surgery • Hormonal therapies • Small-molecule targeted therapies Physical symptoms associated with the underlying tumor or its treatment • Pain • Dyspnoea • Difficulty swallowing • Appetite loss Tumor-related factors and complications • Anaemia • Dehydration • Anorexia • Thrombosis/pulmonary embolism • Renal, liver or heart failure • Neurological deficit • Fever CRFKoornstra e.a., 2014 I N F L U E N C I N G F A C T O R S C A U S I N G A N D M A I N T A I N I N G T H E P R O B L E MT H E P R O B L E M
- 16. DEPRESSIONFEAR LIMITED PHYSICAL ACTIVITY PAIN STRESS COGNITIVE DYSFUNCTIONS Disruptive thoughts Social isolationNo return to work SLEEP DISORDERMalnutrition Feelings of despairFinancial problems Too high expectationsAnger V I C I O U S C I R C L E ( w i t h o u t i n d i c a t i o n s f o r s o m a t i c c a u s e s )T H E P R O B L E M
- 17. P O T E N T I A L T R E A T M E N T SC R F National Comprehensive Cancer Network (NCCN) Intervensions for CRF Pharmacologic interventions - Psychostimulants (methylphenidate) - Antidepressants - Steroids - Supplements (Ginseng, vitamin D) Limited evidence for patients in advanced disease or active treatment No evidence for cancer survivors Non-pharmacologic - Psycho-education - Cognitive Behavior Therapy (CBT) - Mindfulness Based Cognitive Therapy (MBCT) - Exercise programs (strength training, walking, swimming, cycling etc.) - Mind-body interventions: yoga, reiki etc. Positive and promising results (in combination!) 21
- 18. P O T E N T I A L T R E A T M E N T ST H E S O L U T I O N NCCN • There’s no Magic Pill • Cancer-Related Fatigue is a complex problem that requires a multimodal approach
- 19. Weekly measurements Buddy Private Facebook Community Library Personal notes T H E U N T I R E P R O G R A MC R F
- 20. 1. You’re not alone R E V I E WS U M M A R Y 3. Take small steps, every little bit can help! 2. There are ways to cope
- 21. Q&A
- 22. This project has received funding from the European Union’s Horizon 2020 research and innovation programme under Grant agreement No. 756641 THANK YOU! Feedback or Suggestions - info@untire.com
- 23. Q & A SNAP A #STRONGARMSELFIE Flex a “strong arm” & post it to Twitter or Instagram using the hashtag #StrongArmSelfie
- 24. CONTACT US CALL TOLL FREE 1.877.427.2111
Editor's Notes
- Today’s webinar is scheduled for 45 minutes. We will take the first 30 minutes to meet our guests, discuss the problem we’re here to learn more about – Cancer-Related Fatigue then we’ll cover the interventions and solutions available.
- Cancer and the anti-cancer treatments can lead to many side-effects, such as nausea, pain, hair loss, cognitive impairments, diarrhea, anemia and mouth ulcers. The most common problem however is cancer-related fatigue or CRF. That’s what were here today to talk about, give you more insight into what CRF is and how you can better manage it. Bram, if CRF is the most common side effect then why don’t we hear more about it?
- What is Cancer-Related Fatigue or CRF? How do we describe cancer-related fatigue? I would like to use the definition given by the leading National Comprehensive Cancer Network in the USA. It reads: CRF is “a distressing, persistent, subjective sense of tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning“ Mike, how did you first realize you had cancer-related fatigue?
- In addition to this definition I would like to underline that cancer-related fatigue is different from normal fatigue. It occurs suddenly, without notice, feels like exhaustion, is therefore worse than normal fatigue, and has a longer recovery time. Do you recognize this? Mike, what CRF characteristics have you experienced yourself?
- Fatigue can be different for everyone. Each person has their own way to characterize their fatigue and describe it. This word cloud is different for every single person experiencing fatigue. Ask yourself, how do you describe it? Mike, how would you describe the fatigue you experience?
- We know that moderate to severe fatigue can have a considerable detrimental effect on many aspects of patient quality of life. It can impair and limit their ability to function, socialize and participate in previously enjoyable activities. This also applies to the lives of loved ones, because they are affected too. Fatigued people experience physical limitations. Ordinary daily activities such as shopping and walking up a staircase can feel like huge tasks. The lack of energy also shows up in social situations. People say that they feel less able to fulfill the role of partner, parent, colleague or friend. There is a tendency to avoid social activities, because the costs outweigh the benefits. This can result in people becoming socially isolated, even within one's own family and circle of friends. Fatigue can also lead to emotional and psychological problems, which often involve mood disturbances like feelings of anxiety, gloom depression and loneliness, and cognitive problems, such as amnesia and concentration disorders.
- Fatigue cannot be measured objectively, it is a subjective feeling. There is no blood test or scan for it. Only the person involved can indicate how tired he or she is. This can be done via extensive questionnaires, but also with one simple question, namely by asking someone to apply a figure between 0 and 10 to the fatigue, whereby 0 is ‘not tired at all’ and 10 is ‘extremely tired’. Internationally it has been agreed that a score between 0 and 4 indicates that one is ‘mildly fatigued’, between 4 and 7 ‘moderately fatigued’ and between 7 and 10 ‘severely fatigued’. Almost every cancer patient is moderately to severely fatigued during the first year after the diagnosis. Prolonged fatigue - and by this we mean many years - occurs in 30 to 40% of all cancer patients and survivors. Mike, when looking at the Fatigue Score, what rating do you have today? Do you remember what range you were in when you were first diagnosed?
- If we assume 30 to 40% of fatigued cancer patients and survivors suffer from prolonged fatigue, we have a total of 16 million people suffering from CRF in Europe and the USA. That is a staggering number of people who experience the debilitating effect of fatigue on a daily basis. If all these people were to join hands, the chain would stretch from New York City to Athens and back again. And we’re only talking about Europe and the USA and not yet about all fatigued cancer patients worldwide. Counting all those, it amounts to hundreds of millions of fatigued people who have or have had cancer. NOW YOU MAY FEEL LIKE YOURE THE ONLY ONE DEALING WITH Fatigue – YOU ARE TRULY NOT ALONE!
- This slide shows that medical factors have a one-way relationship with fatigue. For example, anemia leads to fatigue, but fatigue does not lead to anemia. However, there is an interaction between fatigue and psychosocial processes. For example, fatigue can lead to poor sleep and poor sleep to fatigue. This can become a vicious circle. Let me say something about that on the following slide. It’s important to note, that you should always discuss your fatigue with your doctor, nurse or other healthcare provider as they can evaluate you for any potential medical causes of the fatigue.
- Amy> Many people may not realize that have a vicious circle of emotions, events and feelings that play a role in cancer-related fatigue Dr. Kuiper> Review the vicious circle concept. Give example of how it works> For example, someone can avoid physical exertion for fear of becoming tired but lose strength and fitness as a result of this and hence become more tired. Mike, when you look at the vicious circle, what parts of the circle did you experience?
- Bram - In 2017, the National Comprehensive Cancer Network (NCCN) published sound and well-considered 'Standards of Care' regarding the diagnosis and treatment of CRF. In preparation, an extensive literature study was carried out into interventions against CRF in case there were no demonstrable medical causes. Pharmacological interventions were found to be of limited effectiveness. Better outcomes appeared to come from non-pharmacological interventions. In particular, there was positive evidence for behavior therapy, mindfulness based cognitive therapy, exercise interventions and psycho-education. The most effective appeared to be interventions that used a combination of these methods. Dr. Kuiper> What interventions seem to work best? Are there interventions that work better for some people more than others?
- So, CRF can have many different causes. The lack of a single cause is also the reason that there is not a single solution available in the form of a magic pill with which you can fix that one cause. It would be great if only it was that easy. Unfortunately, reality is more complicated. It is estimated that in 80 to 90% of all fatigue the is no one clear cause. In the absence of identifiable medical causes we have to follow a multimodal approach, according to the NCCN.
- Now, I just want to take a few minutes to talk about what we created to help provide a solution for CRF. We aimed for a solution that could tie in with the international standards of care on CRF and would use the proven non-pharmacological interventions that I just reviewed. Ultimately, this resulted in the Untire app that we launched last year. It was developed with a team of cancer patients, psychologists, researchers, and oncology experts and designed to help all cancer patients and survivors regardless of age, cancer stage or cancer type. Untire is part of our social enterprise so we are not profit driven but rather focused on creating resources for CRF while being sustainable. Amy> The Untire App provides a comprehensive, easy to use program that is based on proven methods. The program has 4 parts: The My THEMES provides education through the themes section – giving insight into some of the drivers of fatigue along with PHYSICAL ACTIVITIES – Exercises that can increase energy levels. My Exercises gives a variety of activities like meditation, breathing exercises. TIP OF THE DAY: Provides motivation and positive messages to help improve mood. Dr. Kuiper> Often times it is not just one big thing but many little things that are draining energy. Using the app allows you to gain insight you’re your behavior, thoughts and symptoms then shows you the action steps you can take to adjust your lifestyle and behaviors choices. Every week, patients can measure energy levels and track progress to help identify patterns and fatigue changes. This can also be shared with their healthcare providers as well.
- I want to finish by summarizing what we talked about today. Now we look forward to answering your questions,
- Okay, now it is time for our question and answer session with our guests. If you have a questions, please type it into the question box on your screen.
- Thank you everyone for your attention today. If you have additonal questions or comments you are welcome to reach out to us directly. We will be sharing today’s session online on our website and social media shortly. Thank you again!