Exercise and lifestyle physical activity recommendations for people with multiple sclerosis throughout the disease course.pdf

915629 research-article20202020 MSJ0010.1177/1352458520915629Multiple Sclerosis JournalR Kalb, TR Brown MULTIPLE SCLEROSIS MSJ...

915629 research-article20202020 MSJ0010.1177/1352458520915629Multiple Sclerosis JournalR Kalb, TR Brown MULTIPLE SCLEROSIS MSJ JOURNAL Future Perspectives Exercise and lifestyle physical activity Multiple Sclerosis Journal 2020, Vol. 26(12) 1459­–1469 recommendations for people with multiple DOI: 10.1177/ https://doi.org/10.1177/1352458520915629 1352458520915629 https://doi.org/10.1177/1352458520915629 sclerosis throughout the disease course © The Author(s), 2020. Article reuse guidelines: sagepub.com/journals- Rosalind Kalb, Theodore R Brown, Susan Coote, Kathleen Costello, Ulrik Dalgas , permissions Eric Garmon, Barbara Giesser, June Halper, Herb Karpatkin, Jennifer Keller, Alexander V Ng, Lara A Pilutti, Amanda Rohrig, Paul Van Asch, Kathleen Zackowski and Robert W Motl Abstract Correspondence to: K Zackowski Objectives: To provide clinicians who treat multiple sclerosis (MS) patients with evidence-based or National Multiple Sclerosis Society, 733 Third Avenue, expert opinion–based recommendations for promoting exercise and lifestyle physical activity across dis- New York, NY 10017, USA. ability levels. kthleen.zackowski@nmss. org Methods: The National MS Society (“Society”) convened clinical and research experts in the fields of Rosalind Kalb MS, exercise, rehabilitation, and physical activity to (1) reach consensus on optimal exercise and lifestyle Kathleen Costello Eric Garmon physical activity recommendations for individuals with MS at disability levels 0–9.0 on the Expanded Kathleen Zackowski Disability Status Scale (EDSS) and (2) identify and address barriers/facilitators for participation. National Multiple Sclerosis Society, New York, NY, Recommendations: Based on current evidence and expert opinion, the Society makes the following rec- USA ommendations, endorsed by the Consortium of Multiple Sclerosis Centers: Theodore R Brown EvergreenHealth, Kirkland, WA, USA Healthcare providers should endorse and promote the benefits/safety of exercise and lifestyle physical Susan Coote activity for every person with MS. School of Allied Health and Health Research Institute, Early evaluation by a physical or occupational therapist or exercise or sport scientist, experienced in MS University of Limerick, (hereafter referred to as “specialists”), is recommended to establish an individualized exercise and/or Limerick, Ireland lifestyle physical activity plan. Ulrik Dalgas Section of Sport Science, Taking into account comorbidities and symptom fluctuations, healthcare providers should encourage Department of Public Health, ⩾150 min/week of exercise and/or ⩾150 min/week of lifestyle physical activity. Aarhus University, Aarhus, Denmark Progress toward these targets should be gradual, based on the person’s abilities, preferences, and safety. Barbara Giesser If disability increases and exercise/physical activity becomes more challenging, referrals to specialists Pacific Neuroscience Institute, Santa Monica, are essential to ensure safe and appropriate prescriptions. CA, USA When physical mobility is very limited, exercise should be facilitated by a trained assistant. June Halper Consortium of Multiple Sclerosis Centers and Keywords: Multiple sclerosis, exercise, physical activity, lifestyle physical activity, recommendations, International Organization of MS Nurses, Hackensack, wellness, disability NJ, USA Herb Karpatkin Date received: 18 November 2019; revised: 29 February 2020; accepted: 4 March 2020. Program in Physical Therapy, Hunter College, New York, NY, USA Introduction Lifestyle physical activity is the daily accumu- Jennifer Keller Motion Analysis Lab, Wellness is a priority for people with multiple sclero- lation of at least 30 minutes of activities, includ- Kennedy Krieger Institute, sis (MS)1 and can be achieved through health behav- ing all planned or unplanned leisure, Baltimore, MD, USA Alexander V Ng iors including physical activity and exercise.2–4 occupational, or household activities that are at Exercise Science Program, least moderate to vigorous in their intensity.6 Department of Physical Physical activity, including lifestyle physical activity Exercise is a form of leisure-time physical activ- Therapy, Marquette University, Milwaukee, WI, and exercise, comprises any bodily movement pro- ity that is usually performed repeatedly over an USA duced by skeletal muscle contraction that results in a extended period of time (exercise training) with Lara A Pilutti Interdisciplinary School of substantial increase in energy expenditure over rest- a specific external objective (e.g. improvement Health Sciences, University of ing levels.5 of fitness, physical performance, or health).5 Ottawa, Ottawa, ON, Canada journals.sagepub.com/home/msj 1459 Multiple Sclerosis Journal 26(12) Amanda Rohrig Horizon Rehabilitation These activities are distinct from rehabilitation, and physical activity (physicians, nurses, physical Centers, Omaha, NE, USA which is defined as intermittent or ongoing use of therapists, occupational therapists, exercise scientists, Paul Van Asch interdisciplinary strategies to regain or maintain opti- community health professionals) to (1) review the lit- Fit Up Neurological and Sport Physiotherapy, mal physical function, promote functional independ- erature and reach consensus on optimal exercise and Antwerp, Belgium ence, prevent complications, and improve overall lifestyle physical activity recommendations for indi- Robert W Motl quality of life.7 viduals with MS across major categories of disability UAB/Lakeshore Research Collaborative, The University on the EDSS and (2) identify and address barriers and of Alabama at Birmingham, Meta-analyses and systematic reviews of randomized facilitators of participation. The group used published Birmingham, AL, USA controlled trials have demonstrated that people with exercise and physical activity guidelines19,20 as the MS who engage in exercise and lifestyle physical starting point, supplemented by additional high-qual- activity experience benefits from immune cell through ity studies and expert opinion, particularly at the quality-of-life outcomes.8,9 Furthermore, exercise and higher disability levels where evidence has been lack- lifestyle physical activity are safe for people with ing. Sub-teams were created for three EDSS ranges MS.10 While initial studies established exercise as an corresponding to MS with mild impairments (0–4.5), effective symptomatic treatment (tertiary prevention), MS characterized by greater mobility impairment more recent studies have evaluated the disease-modi- (5.0–6.5), and MS characterized by diminished ability fying effects (secondary prevention) as well as the to carry out activities of daily living (7.0–9.0)—which impact on the risk of developing MS (primary preven- are consistent with ranges used in the literature21 (see tion)—explaining why exercise and physical activity Figure 1 in Supplemental Appendix 1). Following a have been suggested as “medicine in MS.”11 review of the recent literature, evidence-based and expert recommendations were created. Unfortunately, MS patients are much less active than healthy controls.12,13 One recent review by an interna- tional panel of experts highlighted the opportunity for Exercise and lifestyle physical activity neurologists, advanced practice clinicians, and pri- recommendations throughout the disease mary care providers to promote exercise and physical course activity in their patients,9 and a recent study demon- To assist clinicians who are unfamiliar with the EDSS, strated that adherence to a physical activity program Table 1 provides clinical descriptors for each disability is higher when referral is made by a physician.14 Yet, range. Tables 2 and 3 provide exercise and lifestyle qualitative research indicates that many providers physical activity recommendations, respectively, as lack the expertise to do so.15 well as key messages for individuals in those disability ranges. The recommendations reflect the minimum This paper offers clinicians specific exercise and life- exercise and lifestyle physical activity targets for peo- style physical activity recommendations—evidence- ple with MS; however, each individual’s starting point based when possible, and expert opinion where and rate of progress toward a target will differ. As dis- published data are lacking—for their patients at all lev- ability increases and mobility becomes more challeng- els of disability. The recommendations are tailored by ing, so does the importance of personalized disability level using the Kurtzke Expanded Disability recommendations and guidance by a trained rehabilita- Status Scale (EDSS)—a method of measuring neuro- tion or exercise professional. For that reason, the EDSS logic disability in MS (see Figure 1 in Supplemental level 7.0–9.0 has been sub-divided to allow for more Appendix 1).16 Levels 0–9.0 (ranging from no disabil- specific recommendations for individuals with the ity to confined to bed) are considered in this paper. highest levels of disability. Recommendations for the intensity of exercise/physi- cal activity are based in part on an individual’s per- Barriers and facilitators to exercise and ceived exertion level (subjective evaluation of lifestyle physical activity intensity, effort, strain, discomfort, and/or fatigue dur- Table 4 presents the types of barriers that may reduce ing exercise). See Table 1a in Supplemental Appendix a person’s ability to engage in exercise and lifestyle 1 for use of Borg’s Rating of Perceived Exertion physical activity, as well as the facilitators that can (RPE).17,18 increase a person’s ability to do so.15 Methodology Discussion The National MS Society convened international Despite ample evidence demonstrating the benefits of experts in the fields of MS, exercise, rehabilitation, exercise and lifestyle physical activity for people with 1460 journals.sagepub.com/home/msj  R Kalb, TR Brown et al. Table 1. Clinical descriptors for EDSS ranges 0–4.5, 5.0–6.5, and 7.0–9.0. EDSS 0–4.5 Symptoms: Ranging from no symptoms to mild-to-moderate fatigue, unsteadiness/imbalance, sensory changes, mild walking impairment, and reduced visual acuity; bowel and/or bladder symptoms; altered mood state; and cognitive impairment Neurologic impairments: Ranging from normal neurologic exam to mild-to-moderate impairments in proprioception, cerebellar function, vision, muscle strength/tone/endurance, bladder function, and cognition Functional limitations: Ranging from no limitations to limited endurance, unsteadiness, and impaired information processing and memory EDSS 5.0–6.5 Symptoms: Progression of any or all symptoms mentioned above Neurologic impairments: May include an increase in the impairments mentioned above, worsening gait (unilateral to bilateral spastic paresis, foot drop with compensatory hip hike, and circumduction with progression from unilateral to bilateral assistance and/or use of manual wheelchair), and upper extremity coordination Functional limitations: Limited walking distance (20–200 m); falls; inability to safely complete dual motor/cognitive tasks; work/home activities require adaptations, compensatory strategies, and mobility aids (ranging from cane to wheeled walker for daily use to a manual wheelchair for distances); transfers on/off the floor and into/out of chairs increasingly challenging; and requires assistance from support partner for more complex daily activities EDSS 7.0–9.0 Symptoms: Continued worsening of all symptoms mentioned above Neurologic impairments: Significant impairments in many or all systems, as mentioned above Functional limitations: Gait—from 10 ft with a walker to restricted to bed and wheelchair; Transfers—from minimal assist to total assist; Bed mobility—from minimal assist to total assist; Seated balance—from independent to total assist; Standing balance—from independent with bilateral support to unable to stand unaided EDSS: Expanded Disability Status Scale. MS, MS patients continue to be substantially less active Experts in the field are urged to collaborate with the than their counterparts in the general population. Many National MS Society and other advocacy organiza- people with MS doubt their ability to be physically tions to create, evaluate, and disseminate the materi- active. Fatigue, mobility impairment, depression, fears als needed by healthcare professionals to fulfill this about safety, reluctance to engage in activities they role. cannot do as easily or well as they did them before, and lack of access to appropriate venues are just a few pos- Every patient can benefit from guidance that is tai- sible reasons for their inactivity. Neurologists, advance lored to her or his needs, abilities, and preferences. practice clinicians, and other healthcare providers can To that end, recommendations for exercise and phys- be powerful advocates for exercise and physical activ- ical activity should include a range of options that ity, emphasizing the benefits for disease and symptom take into account individual differences at every management, overall health, and quality of life, and level of disability. While individuals with mild dis- assuring their patients that it will not worsen their MS. ability may continue to be as physically active as Healthcare providers are encouraged to63 they always have, they may benefit from training by specialists in fatigue and energy management, and in Ask routinely about a patient’s exercise and ways to adapt their favorite activities to meet their physical activity habits needs. As the disease progresses and engaging in Offer timely information about how and why to exercise and physical activity becomes more chal- be physically active (benefits and expected out- lenging, referrals to specialists are essential for comes) as well as guidance about exercise ensuring that patients’ exercise and physical activity equipment, accessible exercise facilities, and strategies are individualized to best meet their needs. transportation For these professionals to offer optimal interven- Suggest strategies to increase self-efficacy, tions, the existing gaps in our knowledge must be accountability, planning and goal-setting, and filled by additional research—particularly at higher self-monitoring, to help the person sustain her levels of disability. In the meantime, the expert rec- or his exercise and lifestyle physical activities. ommendations in this paper complement the journals.sagepub.com/home/msj 1461 1462 Multiple Sclerosis Journal 26(12) Table 2. Exercise recommendations and key messages for EDSS 0–9.0. EDSS 0–4.5 (mild impairments) Key messages Recommended exercise strategies (existing guidelines) Exercise is beneficial even if a person must do it differently than in the past A erobic: 2–3x/week; 10–30 minutes at a moderate exercise intensity (40%–60% of maximum HRa or aerobic capacity), 11–13 RPE (on a Referrals to exercise specialists/programs for individuals with chronic 20-point RPE);19,20,22 modalities might include arm, leg, or combined cycle ergometry; treadmill or overground walking, rowing, running, or conditions can facilitate participation jogging;23 aquatic activities or upright stepping Exercise recommendations should be tailored to address a person’s needs/ ○ Advanced aerobic strategies: capacity, as well as personal preferences  5x/week, up to 40 minutes, 70% of peak aerobic capacity or 80% of maximum HRa, RPE approaching 15 out of RPE 20 (or 5 out of Supervised training generally provides better results than non-supervised RPE 10);19 modalities may include running, road cycling, and pole walking training  HIIT: 1x/week, five 30–90-second intervals at 90%–100% maximum HR, with equivalent rest, to replace a continuous bout of exercise; Exercise may temporarily worsen symptoms in patients who are heat- modalities similar to aerobic24–26 sensitive Resistance: 2–3x/week, 1–3 sets for each exercise, 8–15 repetitions/set, 5–10 exercises;19 modalities might include weight machines, free weights, resistance bands, or body weight exercises Flexibility: daily, 2–3 sets of each stretch, hold 30–60 sec/stretch; modalities might include yoga and stretching exercises27 Neuromotor: 3–6x/week, 20–60 minutes, interventions individualized for intensity and duration, targeting fall prevention,28 postural stability, coordination, and agility at various levels of challenge (seated, standing, walking, upper limb); modalities might include Pilates,29 dance30,31 yoga,32 Tai chi,33 hippotherapy,34 virtual reality,35 and balance and motor control training36 EDSS 5.0–6.5 (increasing mobility impairments) Key messages Recommended exercise strategies (existing guidelines) Same as above, plus Same as above Exercise is possible for people with increasing disability When balance is affected, adaptations to the exercise or the environment can reduce the risk of falls Referrals to specialists are more essential as disability increases, to assure safety, proper form, and appropriate intensity Expert Opinion (in the absence of published data): Adaptive exercise may be desirable for some (e.g. recumbent hand-cycle or three-wheel bike for cycling, pole-walking) With the Borg 10-point scale, intensity would typically be between 2 and 6 Aerobic: heat sensitivity in some patients may require cooling interventions Resistance: functional/multi-joint movements (sit-to-stand, stair climbing, reaching); neuromuscular electrical stimulation Neuromotor: good clinical practice incorporates training in posture, coordination, and agility to prevent secondary impairments (i.e. rotator cuff impingement, Trendelenburg gait, low back pain, falls) EDSS 7.0–7.5 (diminished ability to perform ADLs—non-ambulatory) Key messages Recommended exercise strategies, EDSS 7.0–7.5 At this level of disability, all recommendations are expert opinion except Up to 20 min/day, 3–7 days/week (with each person working to her or his own maximum in order to make gains)—can be accumulated across where noted, due to lack of published evidence several shorter sessions, with rest breaks between repetitions and gradual progression in small increments toward the goal: Exercise is beneficial and achievable regardless of a person’s level of Breathing disability Every second day, 3 sets, 10 repetitions/set; resistive breathing apparatus (e.g. spirometer)38 Exercise can be independent (e.g. breathing exercises, arm movements) or Flexibility facilitated by trained assistants (e.g. stretching, range of motion, transfers) 1x/day, ⩾30–60 seconds, hold/stretch all affected upper and lower extremity joints—combining stretches when possible Exercise at this level of disability needs to be guided by a specialist, but may Upper extremities journals.sagepub.com/home/msj be carried out by trained family or caregivers Six 3-minute intervals at 70% target HR, active range of motion with resistance as able (e.g. arm cycling)39 3x/week, 3 sets, 10 repetitions/set or 10 sets, 3 repetitions/set, as able, with rests as needed; weights or resistance bands (Continued) journals.sagepub.com/home/msj Table 2. (Continued) EDSS 7.0–7.5 (diminished ability to perform ADLs—non-ambulatory) Lower extremities Overground walking with walker as able (approximately 10 ft) 3 sets, 10 repetitions/set of sit-to-stand, reducing assistance and support when possible 3–5x/week, 30 minutes, power assist cycling40–42 3x/week, 30 minutes, standing43 2–5x/week, 30–60 minutes, body weight supported treadmill training44 Core 2x/day, 4–5 repetitions of seated isometric abdominal muscle strengthening, holding each repetition 10–15 seconds 3–5 min/day of moving or stationary seated balance, unsupported or supported Every 1–2 hours, posture exercises (pull shoulder blades back/head up/straighten back), hold for 10–15 seconds Expert Opinion: At EDSS 7.0–7.5, consider rehabilitation and exercise strategies to remediate deficits in functional mobility: gait training, transfer training, and balance Caregiver training, especially at higher EDSS scores, is essential Consider the impact of immobility as well as disease progression on mobility status Schedule rest breaks to allow for more exercises Equipment needs are a major focus EDSS 8.0–8.5 (increasing difficulty performing ADLs—confined to wheelchair) Key messages Recommended exercise strategies, EDSS 8.0–8.5 Same as for EDSS 7.0–7.5 plus the following: Up to 10–15 min/day, 3–7 days/week with rests between repetitions At EDSS 8.0–8.5, consider strategies that promote quality of life/fitness Breathing and reduce morbidity/mortality risks: endurance activities (e.g. arm cycling, Same as 7.0–7.538 lower extremity FES cycling) therapeutic standing, respiratory muscle Flexibility training 1x/day, ⩾30–60 seconds, hold/stretch all affected upper and lower extremity joints, with assistance as needed Upper extremities Six 3-minute intervals at a target HR (or 70% effort), active range of motion with resistance as able (e.g. arm cycling)39 3x/week, 3 sets of 10 repetitions/set or 10 sets of 3 repetitions/set; weights or resistance bands appropriate to ability level Lower extremities 2–3x/day, 1–2 minutes of standing with assistance 3x/week; 30 minutes; standing frame43 Core 2x/day, 3–5 repetitions of seated isometric abdominal muscle strengthening, holding each repetition 5–6 seconds 1–2 min/day of moving or stationary seated balance, unsupported and supported Every 1–2 hours, posture exercises (pull shoulder blades back/head up/straighten back), hold for 10–15 seconds Expert Opinion: Same as for EDSS 7.0–7.5 EDSS 9.0 (inability to perform most ADLs—confined to bed or chair) Key messages Recommended exercise strategies, EDSS 9.0 Same as for EDSS 7.0–7.5 and 8.0–8.5 Up to 10 min/day, 3–7 days/week as tolerated with rest as needed Breathing R Kalb, TR Brown et al. Same as 7.0–7.538 Flexibility Daily passive ROM of all joints with evidence of restriction Active ROM as able FES For ROM to maintain muscle mass/circulation EDSS: Expanded Disability Status Scale; HR: heart rate; RPE: Rating of Perceived Exertion; HIIT: high intensity interval training; ADLs: activities of daily living; ROM: range of motion; FES: functional electrical stimulation. a220 – age = estimated maximum HR.37 1463 1464 Multiple Sclerosis Journal 26(12) Table 3. Lifestyle physical activity recommendations and key messages for EDSS 0–9.0. EDSS 0–4.5 (mild impairments) Key messages Recommended lifestyle physical activity strategies Lifestyle physical activity can be accumulated as part of work, Options are: selected rather than prescribed, planned or unplanned/spontaneous, and accumulated in one long household, and leisure, activities bout or multiple, short bouts throughout the day6,45 Cooling strategies may be useful for those with heat intolerance Physical activity is facilitated through behavior change strategies/techniques (e.g. self-monitoring) and environmental stimuli/prompts (e.g. alarms or calendar notes)46 Physical activity levels can be tracked through self-report (journal) or devices (accelerometry)47,48 Options include: 150 minutes per week or 30 minutes 5 days per week;6,45,49 7,500 steps per day (0.5 standard deviation above the expected for the MS population and a clinically meaningful change);50 increasing daily steps by 800 per day (smallest MCID);51 or increasing daily steps by 15% per day (smallest MCID); Godin Leisure-Time Exercise Questionnaire health contribution scores of either 24+ or 14–23 units based on starting point of 14–23 or