adherence to treatment and rehabilitation

1. ADHERENCE TO TREATMENT AND REHABILITATION Jan Shilling BSN, CRRN, MSCN University of Washington Medical Center Western MS Center

4. Adherence Can be best defined as voluntary, active and collaborative involvement of the patient in a mutually acceptable course of behavior which results in a desired outcome Core elements include partnership, mutually established goals, and a therapeutic alliance Slide from Kathy Costello, CRNP

5. Factors Affecting Adherence to Treatment Patient characteristics Treatment regimen/disease factors Patient -provider relationship/ clinical settings Adapted from Holland N, et al. Rehab Nursing 2001

6. Patient Characteristics Level of motivation Availability of Social Support Knowledge and belief system Previous level of adherence Satisfaction with treatment Length of illness

7. Treatment regimen/ disease factors Number of medications Frequency of dosing Ease of administration Number and severity of side effects Adverse drug reactions Concomitant medical conditions Easy accessibility

8. Patient-provider relationship/clinical settings Trust Consistency Support/reassurance Perceived competence Clear explanations Full disclosure of potential side effects Cognitive functioning Broad scope of service

10. THEORETICAL MODELS RELATED TO ADHERENCE

11. Health Belief Model Patient beliefs and expectations are important Patients weigh the advantages and disadvantages of participating in a behavior Risks, reduce the likelihood of patient adherence

12. Social Learning Theory A cognitive theory that examines what people think How these thoughts influence their beliefs Formerly known as the locus of control theory Internally controlled Externally controlled

13. Self Efficacy Theory Belief a person can or can’t perform a specific behavior Evaluates behavior toward outcomes Can be increased with modeling behavior Participation in support groups Group education

14. Behavior change Behavior change is influenced by two models Transtheoretical - change is a long term process behavior change is dynamic and individualized change is incremental not monumental Harm reduction model - Precontemplation - aware of problem but no plan of change Contemplative - acknowledging a problem and thinking about solving it.

16. Rehabilitation approach Rehabilitative techniques can be used to Improve function Reduce handicap Enhance quality of life Encourage adherence to treatments

17. MS Symptoms that challenge Adherence

18. Neurobehavioral Syndromes in Multiple Sclerosis Changes in “executive” or frontally mediated abilities Organization, Planning, Impulsivitity, Tangentiality, Hyperverbality Complex attention (especially vulnerabilty to destraction) Problems with rate of new learning and with retrieval (but not with storage) Slide from Mary Pepping , PhD. Neuropsychologist, UW MS Center

19. Managing MS-related mind and mood dysfunction: treatments Memory or recall problems are the most common mind dysfunctions for people with MS – and seem to be limited to recent events, like forgetting something learned in the last year, rather than something learned 20 years ago. These problems are best treated with organizational techniques, like keeping all information in a central location, like a planner or a palm pilot. Keep notes and other key information in a notebook. Don’t make notes on random scraps of paper - they are easily lost and misplaced. Other problems can be managed by sharing them with others and working with them to overcome the problem – for example, ask for directions to be simplified or ask for advice when trying to solve a problem.Memory or recall problems are the most common mind dysfunctions for people with MS – and seem to be limited to recent events, like forgetting something learned in the last year, rather than something learned 20 years ago. These problems are best treated with organizational techniques, like keeping all information in a central location, like a planner or a palm pilot. Keep notes and other key information in a notebook. Don’t make notes on random scraps of paper - they are easily lost and misplaced. Other problems can be managed by sharing them with others and working with them to overcome the problem – for example, ask for directions to be simplified or ask for advice when trying to solve a problem.

20. Managing MS-related mind and mood dysfunction: treatments Depression can be caused by MS activity or it can be a reaction to having a difficult life situation. Only a doctor can properly diagnose and treat depression. A doctor may prescribe an antidepressant or psychotherapy, or both, to treat the depression. If you are feeling depressed, talk to your doctor about your treatment options. Your doctor may think it’s best for you to see a specialist. A neuropsychologist, speech pathologist, or occupational therapist may help with MS-related mind/mood rehabilitation – sessions may include memory exercises, concentration activities, spatial skills exercises, and learning ways to be more organized. Goals of treatment are based on individual needs. The research for medical treatment to treat these types of dysfunctions is ongoing. Drugs which have been approved for other indications to treat memory loss are being tested in small clinical trials in people with MS. So far, the results have been mixed – but research in this particular area is ongoing. You and/or your family and friends may find that you are experiencing memory loss more frequently. It could be a sign of disease progression. Speak to your doctor about your treatment options – he or she may know of a treatment that can help you better.Depression can be caused by MS activity or it can be a reaction to having a difficult life situation. Only a doctor can properly diagnose and treat depression. A doctor may prescribe an antidepressant or psychotherapy, or both, to treat the depression. If you are feeling depressed, talk to your doctor about your treatment options. Your doctor may think it’s best for you to see a specialist. A neuropsychologist, speech pathologist, or occupational therapist may help with MS-related mind/mood rehabilitation – sessions may include memory exercises, concentration activities, spatial skills exercises, and learning ways to be more organized. Goals of treatment are based on individual needs. The research for medical treatment to treat these types of dysfunctions is ongoing. Drugs which have been approved for other indications to treat memory loss are being tested in small clinical trials in people with MS. So far, the results have been mixed – but research in this particular area is ongoing. You and/or your family and friends may find that you are experiencing memory loss more frequently. It could be a sign of disease progression. Speak to your doctor about your treatment options – he or she may know of a treatment that can help you better.

22. Understanding Fatigue One of the most common symptoms for people with MS Experienced by 75% to 95% 50% to 60% say it is the worst problem 2 general types of fatigue Chronic persistent: activity-limiting sluggishness for more than 6 weeks, more than 50% of the days and during some part of the day Acute: activity-limiting sluggishness that has just appeared or become noticeably worse within the last 6 weeks Can be a warning sign that other MS symptoms may flare up Can be directly or indirectly related to MS May not be the only reason the patient is tired Fatigue is one of the most common symptoms of people living with MS. In fact 75% to 95% of people experience it. And at least half, if not more, of them consider it to be their worst MS-related problem. Fatigue is also one of the “invisible” symptoms. You can look totally fine but feel completely wiped out. That’s why it is important that you and those around you understand how fatigue can affect someone living with MS and what can be done to manage it. There are 2 general types of fatigue--chronic persistent and acute. Chronic persistent fatigue is an activity-limiting sluggishness that goes on for more than 6 weeks and for more than 50% of those days. It is experienced at least some part of the day. Acute fatigue is activity-limiting sluggishness that is new or has become noticeably worse in the past 6 weeks. This type of fatigue can be an early warning sign that other MS-symptoms may soon follow. Not all fatigue is directly MS-related. There are many possible causes of fatigue that people with MS may be more prone to, but some types are not a direct result of MS.Fatigue is one of the most common symptoms of people living with MS. In fact 75% to 95% of people experience it. And at least half, if not more, of them consider it to be their worst MS-related problem. Fatigue is also one of the “invisible” symptoms. You can look totally fine but feel completely wiped out. That’s why it is important that you and those around you understand how fatigue can affect someone living with MS and what can be done to manage it. There are 2 general types of fatigue--chronic persistent and acute. Chronic persistent fatigue is an activity-limiting sluggishness that goes on for more than 6 weeks and for more than 50% of those days. It is experienced at least some part of the day. Acute fatigue is activity-limiting sluggishness that is new or has become noticeably worse in the past 6 weeks. This type of fatigue can be an early warning sign that other MS-symptoms may soon follow. Not all fatigue is directly MS-related. There are many possible causes of fatigue that people with MS may be more prone to, but some types are not a direct result of MS.

23. Treatment options for fatigue Medications Cooling devices Energy conservation Referral to Physical therapy for ambulation aides and conditioning program Referral to Occupational therapy for energy conservation strategies Vocational counseling for job modification or accommodations

24. Assessment of sleep disorders and depression Assessment of respiratory status Reevaluate medications to determine benefit versus sedative side effects Assessment by PCP for overall general health Referral to Prosthetics and Orthotics for bracing for weak limbs

25. Themes Fatigue ? Cognitive Changes Cognitive Changes ? Fatigue Fatigue ? ? Cognitive Changes

26. Driving performance In MS Evaluation of driving performance can help identify patients ability to return for follow up. Evaluation can be done by OT on a driving simulator. People with MS performed twice the number of accidents and three times the number of concentration faults compared to control drivers. Kotterba S, et al, Eur Neurol 2003

27. No correlation was shown between EDSS score and driving performance but there was some correlation with cognitive dysfunction as measured by the MS functional Composite score. Patients may be reluctant to self report or lack insight with driving problems.

28. Treatment of MS symptoms can interfere with adherence Medications for treatment of depression, fatigue, pain and spasticity can cause headache, drowsiness, somnolence or insomnia In one study patients, given methylprednisolone for exacerbations, performed worse than controls and experienced a selective impairment of explicit memory tasks which completely recovered 60 days after treatment Oliver, R. et al ACTA Neurologica 1998

29. Can Adherence be predicted? Identification of specific prediction factors would help with early identification and individualized intervention and support Predictors of adherence may be Self-efficacy Self-esteem Hope Disability Costello, K et al. International Journal of MS Care 2003

30. Nursing interventions to enhance Adherence Provide instructions in writing Encourage patient to make return appointments before they leave Bring all medications to every appointment Encourage patient to have a care partner accompany them to appointments Educate patient and care partners

31. Nursing interventions to enhance Adherence Encourage the patient to take notes if possible Utilize home care agencies to evaluate safety and function in the home. Enhance patient and family support network Provide access to community resources (ie, MS organizations and support groups)

32. Clarify and identify realistic expectations

33. Empowerment and Adherence Empowerment and hope are related concepts and may be lead to adherence Empowerment enables recognition and mobilization of strengths and resources Empowerment involves knowledge, skills development, coping mastery over the environment and flexibility Slide from Kathy Costello CRNP

34. References Fraser C, Hadjimichael O, Vollmer T. Predictors of adherence to Copaxone therapy in individuals with relapsing-remitting multiple sclerosis. J Neuroscience Nurs. 2001; 33:231-239 Halper J, Kennedy P, Miller CM, et al. Rethinking cognitive function in multiple sclerosis: a nursing perspective. J Neurosci Nurs. 2003;35:70-80. Holland N, Wiesel P. Cavallo P, et al. Adherence to disease-modifying therapy in multiple sclerosis: Part 1 & 2 Rehab Nurs. 2001; 26:172-176 & 221-225.

35. References Oliveri RL, Sibilia G, Valentino P, et al. Pulsed methylprednisolone induces reversible impairment of memory in patients with relapsing -remitting multiple sclerosis. Acta Neurol Scan. 1998;97:366-369. Rao SM, Neuropsychology of multiple sclerosis.Curr Opin Neurol.1995;8:216-220.