Managing Fatigue in Bone Marrow Failure Diseases Lora Thompson, Ph.D. Clinical Psychologist Psychosocial and Palliative Care Program Moffitt Cancer Center Definition of Fatigue a distressing, persistent, subjective sense of physical, emotional, and cognitive tiredness or exhaustion that interferes with usual functioning 1
Disease-Related Fatigue Not proportional to activity Not relieved by rest May be associated with generalized weakness or limb heaviness Presumed to be related to anemia/low hemoglobin < 12 g/dl Other Potential Causes Other medical conditions (ex: hypothyroidism, pulmonary disease, infection) Pain Sleep problems Emotional distress Activity level Poor nutrition Other? 2
Why is it a Challenge to Determine Cause of Fatigue? Often due to co-occurrence of multiple causal factors including pain, sleep disturbance, emotional distress, and other medical conditions Common Symptoms of Depression and Disease-related Fatigue Decreased energy and motivation to engage in daily activities Sleep disturbances (insomnia or sleeping too much) Reduced attention and concentration Psychomotor retardation (observably slowed down) Fatigue is also a symptom of depression 3
Unique Symptoms of Depression Sadness and tearfulness Unable to derive pleasure from activities normally found enjoyable Have a personal or family history of depression Have feelings of hopelessness or suicidal thoughts Fatigue worse in the later afternoon How Common is Fatigue? 89% of men (n = 193) and women (n = 154) with MDS reported excessive fatigue in an international survey (86% US participants) Participant characteristics: Age range 20 90 94.5% Caucasian, 3.7% Asian, <2% other Time since diagnosis 1 mo. 13 yrs. 73% not working 66% tx beyond transfusion support (1% transplant) Steensma DP, et al., Common troublesome symptoms and their impact on quality of life in patients with myelodysplastic syndromes (MDS): Results of a large internet-based survey, Leuk Res, 2008 May;32(5):691-8. 4
What Were the Most Commonly Experienced Symptoms? 100 90 80 70 60 50 40 30 20 10 0 Common Symptoms Bone Pain Excessive Fatigue Fever Night Sweats Undesired Weight Loss Skin Rash Excess Infections What is the Impact of Fatigue? Decreased overall quality of life May affect relationships, ability to work, finances, social activities, activities of daily living 5
Fatigue after Transplantation 124 patients interviewed 1 to 21 years since transplant 14% MDS, AA, MPS Transplant patients had higher levels of fatigue than healthy individuals Other studies also support persistence of fatigue after transplant Bieri et al., Quality of life and social integration after allogeneic hematopoietic SCT. Bone Marr Transp, 2008, 42, 819-827. Treatment of Fatigue Identify and address known medical causes first Anemia, pain, thyroid dysfunction etc. Consider psychological evaluation to assess for depression, and if present, to treat depression Try behavioral strategies to cope with fatigue Consider pharmacological approaches 6
What Does a Psychologist Do? Evaluation consists of an interview and may include self-report questionnaires Goal is to identify any emotional, behavioral, or cognitive difficulties Provide recommendations for treatment Treatment would involve 45-50 minute sessions As brief as one session on coping with fatigue or more to treat depression or other problems Behavioral Strategies: Energy Conservation Daily record of fatigue levels to identify patterns Schedule activities at peak energy Set priorities and postpone non-essential activities Develop a daily routine for waking, sleeping, napping Complete one activity at a time Pace activities (do activity in manageable steps) 7
Behavioral Strategies: Sleep Hygiene Have same bed time and wake time each day Limit daytime napping to 45 minutes or less Restrict in bed activities (no TV, reading) Limit caffeine use (morning only is best) Refrain from alcohol use Refrain from stimulating activities before bedtime Behavioral Strategies: Increase and Maintain Physical Activity Goals: improve muscle tone and cardiac function, manage weight Check with your health care provider first Set small, easy to reach goals and gradually increase Schedule a daily exercise activity 8
Behavioral Strategies: Increase and Maintain Physical Activity Moderately intense aerobic exercise (e.g., walking, bicycling) 55%-75% heart rate max 10 90 minutes, 3 7 days per week Strength training 3 days per week Stretching Mustian, et al., Integrative nonpharmacologic behavioral interventions for the management of cancer-related fatigue. The Oncologist, 2007;12(suppl 1):52-67. Behavioral Strategies: Nutritional Changes Consider consulting with a nutritionist Determine right amount of calories, fats, proteins etc. to increase, decrease, or maintain weight 9
Other Behavioral Strategies Use problem solving techniques to address difficult tasks Problem Did it work? Options Why/why not? Try one Try again Develop coping strategies, such as relaxation techniques Educate others...the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn t have to. Christine Miserandino Long-term Lupus Survivor The Spoon Theory www.butyoudontlooksick.com 10
Cognitive Behavioral Therapy A therapy technique that includes behavioral strategies of energy conservation, increasing/maintaining physical activity, etc. Also focuses on changing how people think about fatigue Modify expectations Modify negative fatigue related thoughts Address fears and concerns Modifying Expectations I should be able to. My family depends on me to. Others should understand how my disease limits me. 11
Modifying Negative Fatigue Related Thoughts I can t stand being fatigued. My fatigue is awful. I can t because I am exhausted all the time. Addressing Fears and Concerns What if I never have enough energy to? What if my fatigue/disease gets worse? What if 12
Medications Hemopoietic growth factors (erythropoietin, darbopoietin) Psychostimulants Wakefulness promoting agent Anti-depressants May not be appropriate for all Quick Reference for Oncology Clinicians: The Psychiatric and Psychological Dimensions of Cancer Symptom Management. 2006. Psycho-stimulants off label use Examples include methylphenidate and dextroamphetamine Increase alertness and motivation Take effect quickly Controlled due to risk potential for tolerance Side effects include headaches, appetite loss, anxiety/nervousness, insomnia, constipation, elevated heart rate/blood pressure 13
Wakefulness Promoting Agent Modafinil How it works is unknown Approved for disorders associated with excessive daytime sleepiness, such as narcolepsy, sleep apnea, shift work sleep disorder Side effects include headache, insomnia anxiety/nervousness, diarrhea, and upset stomach Anti-depressants May be most helpful for those with both fatigue and depression Selective serotonin reuptake inhibitors or serotonin norepinephrine reuptake inhibitors SSRI examples: citalopram, escitalopram, sertraline SNRI example: venlafaxine Generally safe and well-tolerated (fewer side effects) Atypicals include buproprion and mirtazapine Older tricyclic anti-depressants often used if pain is present but have many side effects Miller, K & Massie, MJ. Depressive Disorders. In Holland et al., Psycho-Oncology. 2010. Oxford Univ. Press, p311-318. 14
Complementary and Alternative Medicine Mindfulness based stress reduction Includes meditation techniques Yoga Acupuncture Massage 15