Successful Integration of Complimentary Therapies in Care: Mind-Body Therapies in Cystic Fibrosis John D. Mark MD Clinical Professor Pediatrics Pediatric Pulmonary Medicine Stanford Children’s Health Stanford University School of Medicine

Presenter Disclosure John D. Mark M.D. There are no relationships to disclose related to this presentation.

Objectives Know the difference between Complementary and Alternative medicine (CAM) and Integrative Medicine (IM) Know which CAM therapies are often used by cystic fibrosis (CF) patients The role of mind-body therapies in CF care Should mind-body therapies be considered routinely in CF care?

National Center for Alternative and Integrative Health (NCAIH) Complementary health approaches include modalities and products with a history of use or origins outside of conventional Western medicine. Often patients use complementary health approaches to improve health and wellbeing or to relieve symptoms associated with chronic diseases Most who use complementary health approaches do so to complement conventional care. http://www.cdc.gov/nchs/data/nhsr/nhsr079.pdf

Adults with cystic fibrosis Advances in the treatment of cystic fibrosis (CF) have increased the survival of patients into adulthood. Over 50% of CF patients in the US are >18 years of age. Given the complexity of CF, adequate information is essential. Often patients with CF, regardless of disease severity or age, have reported important and unmet needs for information about their disease- including information regarding non-conventional approaches to CF care. Journal of Cystic Fibrosis 6 (2007) 411–416

Unmet need CF information (%) Ways to deal with decreased energy 32 New CF therapies (including CAM) 31 Ways to deal with unpredictability of the future 28 What to expect if CF gets worse 27 Side effects of CF treatments 27 The severity of my CF 22 Underlying reasons for symptoms 19 Options for treating CF symptoms 18 Hospice care for adults with CF 18 How to manage infection problems 17 Possibility of going on disability 17 How to manage nutritional-GI problems 17 What symptoms indicate need for therapy 16 How to designate a health care proxy 16 How to manage pain 15 Participating in CF research 15 Lung transplantation 12 CF genetic testing 12 Avoiding infections 11 Ways to help me gain weight 7 (233 respondents with a median age of 34 years, median FEV1 was 68% predicted, and 59% were female.)

Non-Conventional approaches Studies have shown about 60-70% of CF patients use non-conventional approaches to care. CF patients reported perceived health benefits associated with CAM (e.g., reduced symptoms, greater emotional comfort) and no patient reported adverse effects The most frequently reported form was breathing exercises and other “mind-body” medicine therapies Complement Ther Clin Pract. 2016 Nov;25:68-74. J Altern Complement Med. 2008 Dec;14(10):1271-3.

Mind Body Therapies Mind-body therapies and practices (e.g. meditation and yoga) are among the top 10 complementary therapies reportedly used by adults and children in the 2007–2012 National Health Interview Survey. Mind-body therapies focus on the interaction between the mind and the body, with the intent to use the mind to influence physical functions and directly affect health. Natl Health Stat Rep. 2015;(78):1–19

Mind Body Therapies Cognitive therapies Meditation Mindfulness-based stress reduction (MBSR) Hypnotherapy Guided imagery Biofeedback Music/singing and Art therapy Martial arts including Tai Chai Yoga

Cognitive Therapies in CF 16 studies with 556 participants were reviewed Example: massage therapy vs bedtime reading for children and adolescents with CF showed massage was superior to bedtime reading in reducing parents’ and children’s anxiety. Concluded that cognitive-behavioral therapy (CBT) should be considered and are likely to improve well-being and adaptation to treatment. Thorax 2015;70:1089–1091.

Hypnosis/Imagery Hypnosis is a state of human consciousness involving focused attention and reduced peripheral awareness with an enhanced capacity to respond to suggestion. Hypnosis typically involves an introduction to the procedure during which one is told that suggestions for imaginative experiences will be presented. The hypnotic induction uses one's imagination, which could result in a “trance” like state.

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Hypnosis One study in pediatric CF patients, 7 to 18 yr olds showed a significant increase in peak flow after hypnosis when compared to the control. Study of 49 adult CF patients, 86% reported that hypnosis was helpful: relaxation, tolerance to medical procedures and treatments, helped cope with headache and improved adherence to medications. American Journal of Clinical Hypnosis. 1994;36(4):282-292 Pediatric pulmonology. 2000;30(6):461-465.

Meditation Meditation uses a quiet location; a comfortable posture, a focus of attention, and an open attitude Asthma study looked at the effect of mindfulness-based stress reduction (MBSR) on the quality of life and lung function After 12 months of MBSR, a significant improvement in quality of life (p=0.001) and perceived stress, but no significant effect found on lung function Thorax. 2012;67(9):769-776

Tai Chi Tai chi is an ancient Chinese tradition is practiced as a form of exercise. It involves a series of movements performed in a slow, focused manner and accompanied by deep breathing. It is low impact and puts minimal stress on muscles and joints, so is safe for all ages and fitness levels. Tai Chi is inexpensive and requires no special equipment- can be done indoors or outdoors.

Tai Chi Tai Chi may calm the sympathetic nervous system and engage the parasympathetic systems. May lead to improvements in: cardiovascular function pulmonary function immune function reduce inflammation .

Music Study of music therapy done during routine chest physiotherapy in children < 2yrs. with CF who were divided into a two groups (no tape and music tape). The outcome was assessed using a 7 point bipolar Likert-type scale The results indicated that children’s enjoyment increased by 1.25 units (p=0.02) compared to non- significant change in the control group. Pediatric pulmonology. 2000;29(5):371-381.

More music Recent study investigated the effects of motivational and relaxation music during exercise. 37 CF patients performed the 6-min walk test under three experimental conditions: listening to no music, relaxation music or motivational music. 6-min distance body weight product was calculated Feeling Scale and the Brunel Music Rating Inventory-2 were used. Complementary Therapies in Clinical Practice 23 (2016) 52e58

Music and CF Work was significantly lower while listening to relaxation music Feeling Scale and Brunel Music Rating Inventory-2 scores were significantly higher with motivational music than with relaxation music Carefully selected motivational music can lead to positive affective response during exercise and increase the enjoyment of patients from exercises

Yoga and CF A prospective pilot study: the safety of a standardized yoga program among CF patients aged 12 to 25 yrs. Participants engaged in a 50-minute yoga session 2/wks for 8 weeks Sessions were individual for infection control concerns. Primary outcome was safety and tolerability also measured respiratory symptoms, CFQ-R, and lung function. Was tolerated by 10 of 11 with improvement in CFQ-R (other parameters did not significantly change) Global Adv Health Care. 2015, 4(6):32-36

Mind body to decrease Stress Immune effectors are released during stress, such as the catecholamines norepinephrine, epinephrine and dopamine; they may induce changes relevant to biofilm formation and adhesion to host epithelia. Effects of stress hormone exposure on bacteria can occur even after the initial stress event has ended. Possible emotional states can modulate susceptibility to both upper and lower respiratory tract infections. Mechanisms of Stress-Mediated Modulation. Springer, 2016.

Mind Body and CF Care There are many types of mind body therapies- consider exploring ones your patient/families may be interested in trying (if any). These therapies may help in improving clinical care. Consider training a team member to become a mind-body practitioner in one or more modalities: hypnosis, imagery, yoga, or mindfulness May have a powerful and positive effect!

Thanks!!