MSAA Presentations at the
2008 CMSC Annual Meeting
Each year the Consortium of Multiple Sclerosis Centers (CMSC) holds a meeting to present the latest findings in research, treatments, and care for individuals with MS. The 2008 annual meeting was held in Denver in May. Prior to the meeting, MS specialists, research centers, and organizations submitted summaries of their work for possible platform, poster, "Works in Progress," or "Whitaker Research Track" presentations.
MSAA submitted three presentations, and each was approved by a committee of MS experts for the 2008 CMSC meeting. The first, which was accepted for a platform presentation, introduces exaggerated startle response as an under-recognized but potentially treatable symptom of MS. The second submission was accepted as a poster presentation and provides specific details on the impact of magnetic resonance imaging (MRI) testing on treatment, adherence, and healthcare. The third submission was accepted for the "Works in Progress" category, giving the results of a study, which showed that relaxation through guided imagery can be effective in lowering injection anxiety. To follow are excerpts from these three presentations.
EXAGGERATED STARTLE RESPONSE (HYPEREKPLEXIA) IN MULTIPLE SCLEROSIS: REVIEW OF 30 PATIENT-REPORTED CASES
Exaggerated startle response or hyperekplexia (also known as hyperexplexia) is not recognized to be associated with multiple sclerosis (MS). The purpose of this report is to increase the awareness of this symptom in MS. Thirty-seven patients self-reported "startle response" after an inquiry in MSAA's "Ask the Doctor" column in The Motivator. Most cases of hyperekplexia in the medical literature are related to hereditary neonatal hyperekplexia and post-traumatic stress disorder (PTSD). Hyperekplexia involves an overactive autonomic arousal, which creates difficulty discriminating and interpreting stimuli. The primary treatment reported in the literature has been clonazepam. No MS patients [responding to the survey] received clonazepam. Thirty of the 37 respondents completed the survey. Startle was usually precipitated by auditory (82 percent), visual (17 percent), tactile (six percent), or a combination of stimuli. The average age of onset of MS symptoms was 26 and the onset of startle was 35. Less than 20 percent of MS patients had startle before their MS, which suggests previous trauma (PTSD) is not related. Other data include: 67 percent have the relapsing-remitting form of MS; 93 percent reported multiple episodes per day; 90 percent have an exaggerated startle response at least once a week and half of these experience startling at least daily. Hyperekplexia was variously described as frightening, embarrassing, painful, dangerous (falling), and disruptive to personal and professional relationships. A total of 73 percent had not had discussions with any healthcare professional, and 17 percent reported that their doctors stated that startle might be related to MS, but had no therapeutic suggestions. In conclusion, hyperekplexia is an under-recognized but potentially treatable symptom of multiple sclerosis. Increased recognition and understanding will promote treatment options.
— Jack Burks, MD, Miriam Franco, MSW, PsyD, Andrea L. Griesé; Susan Wells Courtney; John J. Masino
THE IMPACT OF MRI TESTING ON MS PATIENTS' TREATMENT DECISIONS, ADHERENCE TO MEDICATION AND IN THE MANAGEMENT OF THEIR OVERALL HEALTHCARE
Magnetic resonance imaging (MRI) is an important tool in diagnosing multiple sclerosis and tracking its progression. While MRI exams enable physicians to better understand and manage the treatment of their MS patients, uninsured and underinsured MS patients are often unable to afford an MRI. Through the MRI Institute, MSAA provides financial assistance to MS patients in obtaining an MRI. A survey was sent to MS patients who had used the MRI Institute within the previous year, of whom 220 patients completed and returned the survey. While 51 percent of patients reported that their doctor suggested having an MRI at least once a year, 93 percent of respondents needed the MRI Institute to either cover the full cost of an MRI (63 percent) or to pay their insurance deductible (30 percent). 91 percent of patients discussed the results of their MRI with their physician, and 29 percent reported that the MRI had shown that their condition had worsened. 75 percent of respondents currently use an FDA-approved medication in the treatment of their MS. After receiving the results of their MRI, 29 percent of respondents reported that they had resumed taking their prescribed medication after having stopped for some time, switched from one approved MS treatment medication to another, or used one of the MS treatment medications for the first time. 78 percent of patients reported making one or more positive lifestyle changes. Specifically, 39 percent reported making changes in their lifestyle (i.e., diet, exercise, rest); 32 percent began receiving treatment for an MS symptom; 33 percent visited or scheduled a visit to an MS clinic or specialist; and 35 percent became more active in monitoring their MS and/or seeking out more information about MS. The research suggests that MRI results have a positive impact on decisions that MS patients make in regards to their treatment options, adherence to a prescribed medication, and in managing their overall healthcare.
— Amanda Montague, EdM; Robert Rapp, MAPA; Manuela Bechtel; Ronald Ringer; Jack Burks, MD
PATIENT EDUCATION: USING RELAXATION AND GUIDED IMAGERY FOR MS: LOWERING ANXIETY ASSOCIATED WITH MS & MS INJECTIONS
Background: Stress and anxiety, especially surrounding disease-modifying drug injections (DMT), are major stumbling blocks to adherence. Missed injections due to anxiety are frequent and are a major factor in reduced efficacy. Guided imagery (GI) techniques reduce anxiety that accompany chronic illnesses and painful medical procedures. Objective: This study evaluates the efficacy of GI among relapsing-remitting MS (RRMS) patients who experience anxiety, including injection anxiety. Methodology: RRMS patients were taught GI at six sites following an initial assessment of anxiety and diagnostic MS information. Relaxation training preceded an MS-specific GI script aimed at lowering anxiety, injection anxiety and the perception of DMTs as a healing ally. The scripted GI CD was given to patients to practice daily for two weeks. The anonymous workshop evaluations and follow-up questionnaires were analyzed. Results: To date, 76 percent of participants returned workshop evaluations. Of those, 100 percent indicated they became deeply relaxed, 92 percent found GI to be a helpful technique, and 75 percent reported lowered anxiety. To date, 32 percent returned the follow-up questionnaires. 100 percent reported a lowering of anxiety. Of those, 55 percent specifically reported reduced injection anxiety and 45 percent reported reduced general anxiety as evidenced by improved sleep, confidence, reduced muscle tension, pain and stress, and renewed energy. 94 percent found the workshop to be of value. Conclusion: Guided imagery was found to be effective in lowering general anxiety and injection anxiety in most RRMS patients.
Supported in part through a Bayer Healthcare Pharmaceuticals Educational Grant.
— Miriam Franco, MSW, PsyD, MSCS; Donald Barone, DO; Kathy Barone, RN; Frederick Foley, PhD; Dorothea Cassidy Pfohl, RN, BS, MSCN; Jay Rosenberg, MD; Robin Tillett, RN, MSCN; Katherine Treadaway, LCSW
For a full listing of all the abstracts from the CMSC annual meeting, please visit www.mscare.org, scroll down and select "2008 Annual Meeting Highlights," and then scroll down to select "Abstracts."