ONLY 10% PHYSICAL THERAPY. A lack of awareness of the condition amongst health professionals, patients and wider society

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1 PHYSICAL THERAPY AND EHLERS-DANLOS SYNDROME ONLY 10% From a Structural Approach to a Process Approach of physicians referring EDS-HT patients to rheumatology clinics realized that their joint hypermobility was the underlying cause of their patient s pain Jan Dommerholt, PT, DPT, DAAPM Adib et al. Joint hypermobility syndrome in childhood. A not so benign multisystem disorder? Rheumatology PHYSICAL THERAPY SUBJECTIVE HEALTH COMPLAINTS A lack of awareness of the condition amongst health professionals, patients and wider society Palmer S, Terry R, Rimes KA, Clark C, Simmonds J, Horwood J, Physiotherapy management of joint hypermobility syndrome - a focus group study of patient and health professional perspectives Physiotherapy (2015) The complaints reported were Musculoskeletal (98%) Pseudoneurological (96%) Gastrointestinal (94%) Allergic (73%) and Influenza-like (58%) Maenad S, Assmus J & Berglund B. International Journal of Nursing Studies 48 (2011) EDS-HT: A CHARACTERIZATION OF THE PATIENT S LIVED EXPERIENCE Joints (99%) Cardiovascular system (96%) Gastrointestinal system (96%) Skin (95%) Neurological/psychological manifestations (88%) Genitourinary system (67%) Physical therapy is generally accepted as an efficient treatment for some musculoskeletal complications of EDS Keer R, Simmonds J Joint protection and physical rehabilitation of the adult with hypermobility syndrome. Curr Opin Rheumatol 23: Physical therapy has limits especially concerning time spent (by both the practitioner and the patient), inter-operator variability, and long-term efficacy Castori M et al Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers Danlos syndrome, hypermobility type): Principles and proposal for a multidisciplinary approach. Am J Med Genet Part A 158A: Murray B et al. EDS- HT: A characterization of the patients lived experience. AJOMG. 2013

2 ATTITUDES, BELIEFS AND BEHAVIOURS TOWARDS EXERCISE AMONGST INDIVIDUALS WITH JOINT HYPERMOBILITY SYNDROME/ EHLERS DANLOS SYNDROME HYPERMOBILITY TYPE J. Simmonds, M. Cairns, N. Ninis, W. Lever, Q. Aziz, A. Hakim 900 females and 46 males 81% (755/942) had received exercise advice from a physiotherapist 77% (701/940) agreed or strongly agreed that exercise was important for management ATTITUDES, BELIEFS AND BEHAVIOURS TOWARDS EXERCISE AMONGST INDIVIDUALS WITH JOINT HYPERMOBILITY SYNDROME/ EHLERS DANLOS SYNDROME HYPERMOBILITY TYPE J. Simmonds, M. Cairns, N. Ninis, W. Lever, Q. Aziz, A. Hakim Swimming 28% (261/946) Walking 24% (233/946) and Pilates 22% (221/496) PHYSICAL THERAPY PHYSICAL THERAPY Diagnosis and subsequent referral to physiotherapy services is often difficult and convoluted Referral was often for acute single joint injury, failing to recognize the long-term multi-joint nature of the condition Palmer S, Terry R, Rimes KA, Clark C, Simmonds J, Horwood J, Physiotherapy management of joint hypermobility syndrome - a focus group study of patient and health professional perspectives Physiotherapy (2015) Health professionals and patients felt that if left undiagnosed, EDS was more difficult to treat because of its chronic nature When EDS was treated by health professionals with knowledge of the condition, patients reported satisfactory outcomes Palmer S, Terry R, Rimes KA, Clark C, Simmonds J, Horwood J, Physiotherapy management of joint hypermobility syndrome - a focus group study of patient and health professional perspectives Physiotherapy (2015) POSTURE CORRECTION ONLY ABOUT 4% OF PHYSICAL THERAPISTS ADMIT LIKING THE MANAGEMENT OF PATIENTS WITH PERSISTENT (CHRONIC) PAIN Perceived asymmetry, imbalances, misalignments, or postural deviations are usually normal biological variations and not pathology, even in many cases of EDS The cause of many common musculoskeletal and pain complaints cannot be explained solely by biomechanics, structure or posture Wolff MS et al 1991 Physical Therapy 71:

3 LACK OF VALIDITY OF MOST COMMON ORTHOPEDIC TESTS The majority of orthopedic tests used in physical therapy and medicine lack diagnostic validity, i.e., Most tests for the shoulder (gleno-humeral joint) lack sensitivity and specificity There are no reliable tests for the position of the sacroiliac joint The validity of a clinical test can be defined as the extent to which the test measures the intended construct The anatomical findings are not associated with the level of pain Symptoms of Pain Do Not Correlate with Rotator Cuff Tear Severity A Cross- Sectional Study of 393 Patients with a Symptomatic Atraumatic Full- Thickness Rotator Cuff Tear Dunn et al. JBJS 2014 LACK OF VALIDITY OF SACRO-ILIAC JOINT TESTS Tests for sacroiliac joint (SIJ) symmetry of motion and palpation fail to achieve meaningful reliability Numerous studies have examined the validity of palpatory and motion symmetry tests and have consistently found it to be limited Asymmetrical positions are likely to be the product of local muscular forces producing strain on the pelvis, which give the illusion of SIJ positional faults LACK OF VALIDITY OF MOST COMMON ORTHOPEDIC TESTS Most tests when considered independently lack sufficient diagnostic accuracy to determine the appropriate clinical course of action Clustering of tests may provide improved diagnostic accuracy Abnormal Findings in Asymptomatic Subjects Of 1211 asymptomatic subjects in their 20s: 73.3% of males 78.0% of females had bulging discs Nakashima, H, Yukawa, Y, Suda, K, Yamagata, M, Ueta, T & Kato, F, Abnormal findings on magnetic resonance images of the cervical spines in 1211 asymptomatic subjects. Spine (Phila Pa 1976), 40,

4 JOINT MANIPULATION NO HANDS-ON PHYSICAL THERAPY?? Many of our patients with EDS-HT have received joint manipulations to correct stiff spinal segments It is, however, questionable whether EDS-HT patients ever need spinal manipulations If the goal of hands-on physical therapy is to correct asymmetry, imbalances, misalignments, or postural deviations, its value is questionable ERGONOMICS ERGONOMICS The best ergonomic chair is only as good as the behavior of the person who sits in that chair Ergonomic modifications are often indicated, but they are not the silver bullet to solve all problems RING SPLINTS

5 Dutch study: CHRONIC PAIN 92% reported chronic pain 87% of those with pain were disabled Voermans et al: Pain in Ehlers-Danlos Syndrome is common, severe, and associated with functional impairment. J Pain Symptom Manage (3):370-8 Waiting for the pain to go before returning to physical activity is not going to work, because inactivity and abnormal movement are the two most important driving forces for the pain Maillard & Payne; Physiotherapy and occupational therapy in the hypermobile child. In: Hakim, Keer & Grahame: Hypermobility, Fibromyalgia and Chronic Pain. Churchill Livingstone, Elsevier, the pain will ease but only when the muscles are strong and fit and are protecting the joints more fully, and when the child is functioning normally both biomechanically and generally.. the pain is the last thing to improve and only does so slowly.. Rest Pelvic Tilt PHYSICAL THERAPY FOR PAIN MANAGEMENT During a pain experience, multiple areas of the brain are activated at exactly the same time Maillard & Payne; Physiotherapy and occupational therapy in the hypermobile child. In: Hakim, Keer & Grahame: Hypermobility, Fibromyalgia and Chronic Pain. Churchill Livingstone, Elsevier, 2010 The most common areas associated with the pain neuromatrix are the anterior cingulate, primary sensory cortex, thalamus, anterior insula, and the prefrontal and posterior parietal cortices Louw A: Treating the Brain in Chronic Pain. In: Fernández de las Peñas, C, J. Cleland and J Dommerholt: Manual Therapy for Musculoskeletal Pain Syndromes An Evidenced and Clinical-Informed Approach. Churchill Livingstone (Elsevier), 2016 HOMUNCULUS PHYSICAL THERAPY FOR PAIN MANAGEMENT In chronic pain these areas of the brain are likely to be enslaved by pain Exercise or specific movements can be difficult, since the motor cortex is being utilized as part of the pain neuromatrix Louw A: Treating the Brain in Chronic Pain. In: Fernández de las Peñas, C, J. Cleland and J Dommerholt: Manual Therapy for Musculoskeletal Pain Syndromes An Evidenced and Clinical-Informed Approach. Churchill Livingstone (Elsevier), 2016

6 PHYSICAL THERAPY FOR PAIN MANAGEMENT Patients have been accused of malingering, or being lazy or not motivated Yet from a neuroscience perspective there is a justified reason for their difficulty with these exercises Louw A: Treating the Brain in Chronic Pain. In: Fernández de las Peñas, C, J. Cleland and J Dommerholt: Manual Therapy for Musculoskeletal Pain Syndromes An Evidenced and Clinical-Informed Approach. Churchill Livingstone (Elsevier), 2016 PHYSICAL THERAPY FOR PAIN MANAGEMENT Traditionally, clinicians have either followed a top-down (cognitive) or a bottom-up approach (such as manual therapy) to treat pain The two approaches are not mutually exclusive and clinicians are therefore urged to consider a combination of the two Louw A: Treating the Brain in Chronic Pain. In: Fernández de las Peñas, C, J. Cleland and J Dommerholt: Manual Therapy for Musculoskeletal Pain Syndromes An Evidenced and Clinical-Informed Approach. Churchill Livingstone (Elsevier), 2016 COMBINATION HANDS-ON PHYSICAL THERAPY?? If the goal of hands-on physical therapy is to compliment therapeutic neuroscience education, hands-on therapy can be very useful TOP-DOWN: therapeutic neuroscience education (TNE) BOTTOM-UP: manual therapy and exercise Manual therapy Soft tissue mobilizations Dry needling Exercise HANDS-ON PHYSICAL THERAPY?? Therapeutic neuroscience education works best if combined with movement-based therapies such as manual therapy and exercise Feeding the brain information from both ends WHAT DOES THE RESEARCH SAY ABOUT PT, EDS AND EXERCISE? Not much. Louw A: Treating the Brain in Chronic Pain. In: Fernández de las Peñas, C, J. Cleland and J Dommerholt: Manual Therapy for Musculoskeletal Pain Syndromes An Evidenced and Clinical-Informed Approach. Churchill Livingstone (Elsevier), 2016

7 Positive outcome: Only 33.9% of the patients who underwent surgery Only 63.4% of patients in physical therapy Rombaut et al. Arch Phys Med Rehabil 2011;92: titles were identified Four articles met the inclusion criteria, comprising one controlled trial, one comparative trial and two cohort studies All studies found clinical improvements over time Physiotherapy. 2014;100(3): No convincing evidence that exercise was better than control or that jointspecific and generalized exercise differed in effectiveness Physiotherapy. 2014;100(3):

8 Internal Focus vs COMMON PT HOME EXERCISE PROGRAM AROM shld push-ups at wall Stand facing wall, about inches away Place hands on wall at shoulder height Slowly bend elbows, bringing face to wall Push back to start position and repeat External Focus Perform 1 set of 5 repetitions, twice a day Perform 1 repetition every 4 seconds COMMON PT HOME EXERCISE PROGRAM AROM knee step ups Stand with involved leg up on step Shift weight over knee Step up slowly Step back down leading with involved leg Repeat Special Instructions: Do not push off with trailing foot. This can be done by keeping ball of foot of the trailing foot lifted up. Perform 1 set of 5 repetitions, twice a day Perform 1 repetition every 4 seconds Lie on your left side with your knees bent and place a ball between your knees Press your left toes slightly into the wall Inhale through your nose and gently slide your right leg forward without letting your trunk rotate forward Exhale and gently push your left leg up into the ball Inhale again and slide your right leg forward further Exhale and squeeze your left leg into the ball Repeat this sequence until you have taken a total of three breaths in and out Boyle, KL, Managing a female patient with left low back pain and sacroiliac joint pain with therapeutic exercise: a case report. Physiother Can, 63, COMPLIANCE COMPLIANCE Of 364 patients, 73% were referred to exercise rehabilitation following cardiac surgery, 42% did not complete the program and 28% never showed up Up to 70% of patients do not engage in prescribed home exercise Laustsen et al: Predictors for not completing exercise- based rehabilitation following cardiac surgery. Scand Cardiovasc J. 2013;47(6): Beinart NA: Individual and intervention- related factors associated with adherence to home exercise in chronic low back pain: a systematic review. Spine J. 2013;13(12):

9 INTERNAL VS EXTERNAL An apparent conflict existed between offering a specific exercise program based on physical impairments and pain patterns derived from assessment, and empowering patients to take control by undertaking an exercise program they found fun or enjoyed Internal focus: Exert force with outer foot External focus: Exert force on the outer part of the plate Control: No focus instructions Physiotherapy (2015) Wulf, G., Höß, M., & Prinz, W. (1998). Instructions for motor learning: Differential effects of internal versus external focus of attention. Journal of Motor Behavior, 30, Wulf, G., Höß, M., & Prinz, W. (1998). Instructions for motor learning: Differential effects of internal versus external focus of attention. Journal of Motor Behavior, 30, From Wulf G: APTA Combined Sections Meeting Las Vegas, NV Wulf, G., Weigelt, M., Poulter, D.R., & McNevin, N.H. (2003). Attentional focus on supra-postural tasks affects balance learning. Quarterly Journal of Experimental Psychology, 56, From Wulf G: APTA Combined Sections Meeting Las Vegas, NV Examples of supra-postural tasks Wulf, G., Weigelt, M., Poulter, D.R., & McNevin, N.H. (2003). Attentional focus on supra-postural tasks affects balance learning. Quarterly Journal of Experimental Psychology, 56, From Wulf G: APTA Combined Sections Meeting Las Vegas, NV

10 The focus of attention clearly has significant effects on the accuracy with which subjects can generate force and significant effects of motor planning in force production Training with an external focus of attention leads to improved performance when no attentional focus instructions are given Human Movement Science 31 (2012) Human Movement Science 31 (2012) An external focus of attention increases the automaticity of control Competitive cyclists performed significantly faster during a 16.1-km competitive trial than when performing maximally, without a competitor The improvement in performance was elicited due to a greater external distraction, deterring perceived exertion Human Movement Science 31 (2012) Journal of Science and Medicine in Sport 18 (2015) The advantages of an external focus of attention may not be immediate, but often emerge only later in practice (but the research is not consistent.) An external focus of attention does not only improve performance, but could improve learning as well Human Movement Science 33 (2014) Human Movement Science 33 (2014)

11 APPLIES TO An internal focus of attention can hinder learning relative to an external focus Human Movement Science 33 (2014) Sports performance: Golf Basketball Volleyball Soccer Dart throwing American Football Jumping APPLIES TO MULTIPLE SCLEROSIS Parkinson s disease CVA (stroke) Autism Balance in older adults Pediatrics Multiple Sclerosis Wulf, G., Landers, M., Lewthwaite, R., & Töllner, T. (2009). External focus instructions reduce postural instability in individuals with Parkinson disease. Physical Therapy, 89, MS patients with balance problems (1) conventional balance training (control), (2) exergame training (playing exergames on an unstable platform) (3) single-task (ST) exercises on the unstable platform Playing exergames on an unstable surface had superior outcomes in balance and adherence DOES IT WORK? DOES IT WORK? From a Structural Approach to a Process Approach Ehlers Danlos Syndrome?? POTS?? There is no research yet, that demonstrates superior outcomes Eileen - Ehlers Danlos Syndrome

12 DOES IT WORK? DOES IT WORK? Molly - Postural Orthostatic Tachycardia Syndrome Molly - Postural Orthostatic Tachycardia Syndrome DOES IT WORK? Cassidy - Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome THANKS TO EILEEN MOLLY CASSIDY DR. MARIA ARINI, PT, DPT EDNF OUR OTHER PATIENTS