Supplemental Material for PTNow and MSEDGE: Using APTA's Translational Knowledge Resources to Manage the Patient With Multiple Sclerosis at CSM 2016

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Aleesha Daniel
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1 Supplemental Material for PTNow and MSEDGE: Using APTA's Translational Knowledge Resources to Manage the Patient With Multiple Sclerosis at CSM 2016 PTNow Clinical Case Example: PT Management of Late Stage/Severe Multiple Sclerosis Authors: James Gurley, PT, DPT, NCS Evan T. Cohen PT, PhD, NCS Reprinted with permission of the American Physical Therapy Association. No additional copying or distribution is permitted without prior written approval from APTA American Physical Therapy Association

2 Long term and palliative care for a 58 year old man with severe MS related disability This case illustrates portions of the PTNow Clinical Summary of Multiple Sclerosis This case describes how a physical therapist can provide palliative care to persons with late stage MS to help them achieve their goals and prevent secondary complications related to MS. This case describes three episodes of home based physical therapy over a period of approximately five years. The first episode was shortly after a hospital admission for an acute exacerbation of MS. The second episode was approximately two years later and was initiated due to a decline in the patient s function. The third episode was started after the patient was hospitalized for pneumonia and was again discharged to his home. The purpose of this case is to describe how to address a patient's needs where the overall expectation is a further decline or deterioration in function, and the PT's goals are to maximize function and quality of life while preventing secondary complications. This is a particularly challenging problem for the Physical Therapist as there is very little evidence to drive decisions about care. Case Background Mr. D is a 58 year old man with a 26 year history of multiple sclerosis (MS). He experienced the relapsing remitting type for nearly 14 years before the evolution of the disease to the current, secondary progressive type. His past medical and surgical history includes atrial fibrillation, chronic urinary tract infections, and remote cholecystectomy. His current medications included Rebif (an MSdisease modifying agent), methenamine hippurate (to treat/prevent urinary tract infections), baclofen (an anti spasmotic), and warfarin (an anti coagulant). At the time of first contact, Mr. D had been hospitalized after an MS exacerbation after which he left the hospital requiring a transfer board to perform lateral transfers (e.g. bed to/from scooter, scooter to/from toilet, etc.), could ambulate only very short distances (5 10 feet) with bilateral assistive devices, and used a motorized scooter for home and community locomotion. He lived alone in an apartment building with 6 steps down to enter the lobby where the elevator was located. There were three additional stairs up to the living area once entering the apartment. He had retired and had been on Medicare disability 10 years prior to the initial contact. He had recently hired a part time home attendant to assist with iadls. Episode 1. Over the next year, Mr. D had a further deterioration in his physical function. At this point, he could no longer perform bed mobility or transfers independently. He asked a physical therapist to come into his home to conduct an examination and help address his pertinent goals. Patient Identified Problems: 1. Unable to transfer to/from wheelchair with transfer board 2. Beginning to develop contractures in lower extremities and hands/wrists. Summary of Key Examination Findings

3 The initial examination findings were significant for problems with ROM, strength, sitting balance and tone. He also required assistance for bed mobility and transfers. Previously, he was independent in bed mobility and bed to chair transfers using a transfer board. He now required moderate assistance for bed mobility and maximal assistance for bed to chair transfers. His caregivers were instructed in proper transfers. For community mobility he had been using a motorized scooter, but he now was no longer able to transfer into it or operate it safely. He now needed more support in sitting than the chair in the scooter provided. He was issued a stock manual wheelchair that his caregivers would propel. Due to his muscle weakness, especially at the distal extremities, further loss of ROM was a concern. He was issued wrist/hand resting splints and his caregivers were educated in generalized ROM exercises throughout bilateral UE and LEs. Problems with body structure/function Range of motion Muscle strength Muscle tone Mild to moderate limitations in wrist and finger flexion/extension; shoulder flexion/abduction/external rotation; mild limitation in ankle dorsiflexion Grossly 3/5 throughout bilateral hands/wrist and ankle; 4/5 at bilateral shoulder, elbow/ hip/ and knee Modified Ashworth Scale = 1/5 in R ankle plantarflexors, knee flexors, and elbow flexors, 2/5 in L ankle plantarflexors, knee flexors, and elbow flexors and extensors, otherwise normal (For more information, see the MSEDGE Report ( edge documents/final ms edgedocument.pdf?sfvrsn=4), pp and MSEDGE Compendium of Instructions ( edge documents/ms edge compendium ofinstructions.pdf?sfvrsn=4), pp ) Activity limitations Bed mobility Transfers Sitting balance Wheeled locomotion Required moderate assistance for rolling bilaterally and for transferring supine to/from sitting Required maximal assistance for bed to wheelchair transfers with a transfer board Able to sit statically at the edge of the bed once placed for seconds. Unable to maintain dynamic sitting balance without physical assistance. Unable to safely operate his motorized scooter. Participation limitations Community mobility and access Unable to access the community for iadl (e.g. shopping) or recreation (e.g. going to the movie theater)

4 Evaluation/PT Diagnosis Problem Intervention Rationale Unable to perform bed mobility independently Training of caregivers: While his skin was intact and showed no evidence of Bed mobility breakdown at the time of the Proper bed positioning examination, maintaining skin Preventative: Hospital bed was procured with a pressure relieving mattress integrity was a priority as he was unable to reposition himself independently. Unable to transfer from bed to wheelchair without assistance Decreased ROM Unable to safely utilize motorized scooter for community access Transfer training for caregivers: Supine <> sit Bed <> wheelchair using a transfer board Bed <>wheelchair using a mechanical lift Rehabilitative: ROM exercises initiated and caregivers trained Preventative: Resting wrist/hand splints issued to the patient Procured a stock manual wheelchair to be propelled by caregivers to facilitate community access. Transfer training required for patient and caregiver safety and to enable patient to get out of bed and interact with the environment. Knowing that his strength and physical abilities were declining a mechanical lift was procured and caregivers were trained on proper use. Given his limitations in ROM, there was concern if the disease progressed that he would continue to lose ROM and function. Mr. D could not safely balance on his scooter and had difficulty with controls due to diminished hand/arm function. Another option included procuring a motorized wheelchair, however, Mr. D. was not amenable to this suggestion. Episode 2. Mr. D's status was generally medically stable with gradual functional deterioration over the next two years, at which point, Mr. D called the PT to visit again to address new problems. Patient identified problems 1. Unable to safely use existing wheelchair 2. Unable to safely exit/enter his home

5 Summary of Key Examination Findings Problems with body structure/function Range of motion Muscle strength Muscle tone Mild limitations in wrist flexion/extension. Moderate to severe limitations in finger flexion/extension, elbow extension; shoulder flexion/abduction/external rotation. Otherwise unchanged. 1/5 at bilateral wrist/hand and ankles; 3/5 at bilateral elbows; 1/5 at bilateral shoulders; 2/5 at bilateral knees and hips Modified Ashworth Scale = 2/5 in bilateral ankle plantarflexors, and knee flexors, and 3/5 in L elbow flexors and extensors, otherwise normal ((For more information, see the MSEDGE Report ( edgedocuments/final ms edge document.pdf?sfvrsn=4), pp and MSEDGE Compendium of Instructions ( edgedocuments/ms edge compendium of instructions.pdf?sfvrsn=4), pp ) Activity limitations Bed mobility Transfers Sitting balance and posture Stair climbing Dependent to roll bilaterally and to transfer supine to/from sitting Dependent in all transfers Required moderate assistance to sit at the edge of the bed. Unable to maintain good seated posture in wheelchair. Required frequent repositioning by caregivers. Unable to negotiate lobby stairs with caregiver 2 3 people required to lift Mr. D and his wheelchair up and down the stairs. Participation limitations Community mobility and access Unable to access the community for iadl (e.g. shopping) or recreation (e.g. going to the movie theater). Evaluation/diagnosis Despite being medically stable over the previous 2 years since his last episode of care, his strength, ROM, and functional mobility declined significantly. He no longer had any movement against gravity and he was fully dependent in all functional mobility. His sitting balance further deteriorated and he no longer had enough support in his stock wheelchair as he required frequent repositioning by his caregivers. The caregivers noted that he quickly became non compliant in the use of the wrist/hand resting splints after they were issued.

6 Arrangements were made for a seating evaluation at the local hospital. He was issued a manual tilt inspace wheelchair with a pressure relieving seat cushion. Due to his worsening sitting balance and his history of a mild to moderate scoliosis, a custom molded back was also ordered. He now was fully dependent in all bed mobility and transfers. A pressure relieving mattress was procured for his hospital bed due to concerns of maintaining his skin integrity. It was very difficult for the caregivers to transfer him to the wheelchair, and now with the pressure relieving mattress and tiltin space wheelchair, it was no longer possible for them to transfer him out of bed manually. A mechanical lift was procured in order to allow his caregivers to transfer him to his wheelchair. Entering and exiting his apartment and the lobby of his building with the standard wheelchair had been difficult but now was not possible in the tilt in space wheelchair without a ramp. Architectural barriers included 3 steps to enter his apartment after opening the front door as well as a curved stairwell to enter the building s lobby. A removable ramp was procured for apartment ingress/egress (Please click here for a photo of the apartment entry ocuments/entryway.pdf) and of the entry with the ramp in place ocuments/entrywaywithramp.pdf). Neither a ramp nor a lift could be installed in the lobby due to the curved nature of the stairwell, so architectural changes had to be made. The other tenants of the building were reluctant to make any changes to the lobby. The therapist acted as an advocate for the patient, writing a letter to the Board of Directors detailing why the changes were necessary. The Board of Directors eventually agreed to make and pay for the necessary changes. An Architect who was well versed in ADA regulations was retained. The modifications ultimately included a restructuring of the entry stairs and the supporting wall, and the installation of a mechanical lift. His caregivers were instructed in the use of the new wheelchair and in use of the mechanical lift giving Mr. D and his caregivers unfettered access. Problem Intervention Rationale Patient unable to safely propel wheelchair independently. Patient now dependent in bed mobility and transfers. Procuring a manual tilt in space wheelchair with a custom molded back and pressure relieving seat cushion (click here to see a photo of the patient in the new wheelchair upright ocuments/wh eelchair Upright.pdf) and with the tilt in space engaged ocuments/wh eelchair Tilted.pdf) Patient/caregiver training in use of new wheelchair Caregiver training of proper use of bed positioning devices Click here for an photo example of safe bed positioning Patient was now dependent in wheelchair mobility and his inability to maintain good seated posture necessitated the new wheelchair for pressure relief and back support. His caregivers had never used a tilt inspace wheelchair before and required training. Maintaining skin integrity was a concern now that was unable to reposition himself without assistance.

7 Patient no longer able to negotiate the stairs without assistance and required 2 3 person assist to transfer him up/down the stairs in the new, heavier and more cumbersome, tilt in space wheelchair. ocuments/lep ositioning.pdf) Mechanical lift procured and caregivers trained. Click here to see a video of the mechanical lift transfer ( Pressure relieving mattress procured for hospital bed. Referral to a ADA architect to minimize architectural barriers to building ingress/egress Procurement of a removable ramp to enter/leave his apartment Caregiver training of use of ramp Patient had 6 steps down to get to the lobby and elevator of the building. The stairway was curved, and neither a ramp nor a chair lift could be installed without modifications to the stairway and lobby. Patient had 3 steps to enter his apartment and a ramp was required. Episode 3. Mr. D's status was stable for approximately 3 years when he was hospitalized with an acute fever and was diagnosed with left lower lobe aspiration pneumonia. After discharge to his home, he again called the PT to visit and address newly identified needs. Patient identified problems: 1. Diminished pulmonary function 2. Further reduced bed mobility and flexibility Examination Summary of Key Examination Findings Problems with body structure/function Range of motion Strength Muscle tone Respiratory Unchanged from last examination 0/5 at bilateral lower extremities and wrist/hands; 2/5 at bilateral elbows and shoulders Unchanged from last examination Decreased maximum inspiration per incentive spirometry (~250ml peak flow). Observation of chest symmetry shows diminished expansion of the left lower lobe during maximum voluntary inspiration

8 Circumferential measure of lower chest expansion (measured at the midpoint between xiphoid and umbilicus) was 1cm at maximum voluntary inspiration. Diminished breath sounds on auscultation (left lower lobe) Weak voluntary cough but good reflexive cough. Activity limitations Bed mobility Transfers Sitting balance Dependent Dependent Required moderate assistance to sit at the edge of the bed once positioned. Participation Community mobility and access Able to leave and enter his apartment and his building lobby in his wheelchair with the assistance of one person Evaluation/Diagnosis: Mr. D now presented with little volitional movement. He was only able to actively move his head, elbows and shoulders. His recent hospitalization was strongly suggestive of declining swallowing and respiratory function. While hospitalized a swallow study was ordered, which Mr. D refused. Prior to discharge from acute care, his last chest x ray showed his pneumonia had resolved but that he likely had a right lower lobe atelectasis. He presented with diminished lung expansion and a poor volitional cough but still a good reflexive cough. An incentive spirometer was issued and chest PT was initiated in order to improve his lung function. At this point, Mr. D was amenable to starting a stretching/prom program to minimize further contracture development. Problem Intervention Rationale Impaired Rehabilitative: Patient s impaired swallowing swallowi ng function Referral to a Speech Language Pathologist (SLP) and assistance with recruiting a qualified SLP to Mr. D s health care team. function led to his recent hospitalization for aspiration pneumonia. Although Mr. D refused a swallowing study in the hospital, the PT educated Mr. D about the possible consequences of poor swallowing and respiratory function as well as the ability to improve swallowing function. He agreed to have a speech language

9 Impaired respirato ry function Limited ROM in upper and lower extremiti es Rehabilitative and Preventative: Initiated chest physical therapy. (Click here to see a video demonstrating chest PT: 57) Issued incentive spirometer. Click here to see a video demonstration of the patient using the incentive spirometer: 56) Caregiver training for chest physical therapy, use of incentive spirometer, and positioning to promote respiratory hygiene Rehabilitative and Preventative: Patient and caregiver training in a more aggressive bed positioning program, and in detailed PROM/stretching..Please click on the following links to see photos of sample PROM/stretching interventions: o Elbow/shoulder ocuments/elbowandshoulderprom.pdf) o Forearm ocuments/forearmprom.pdf) o Wrist ocuments/wristprom.pdf) o Knee extension and hip rotation ocuments/kneeexthiprotationprom.pdf) o Hamstring/knee extension ocuments/hamstringkneeextprom.pdf) o Gastrocnemius/soleus/ankle ocuments/hamstringkneeextprom.pdf) pathologist come to the home for an evaluation. Improve his lung expansion and symmetry, and assist with clearance of lung secretions. Recent chest x ray revealed pneumonia had resolved but showed left lower lobe atelectasis Mr. D and his caregivers were left with instructions to contact the PT as soon as possible if new examination or intensive intervention was required.

Range of motion and positioning

Range of motion and positioning Learning guide Why is motion important? Most people take free, comfortable movement for granted. Motion is meant to be smooth and painless. The ligaments, tendons, muscles,