Multiple sclerosis (MS) is a common longterm

Transcription

1 Professional Education in Multiple Sclerosis Care Through a Multidisciplinary Program for Health Care Practitioners Alexander Rae-Grant, MD; Sharon R. Kimmel, PhD; Nancy Eckert, RN; Richard Schall, PhD; Maureen Beilman, MEd; Deborah Kimmel, MD Multiple sclerosis (MS) is a common and long-term condition. It requires the intervention of various health care practitioners over a spectrum of care ranging from first diagnosis to end-of-life decisions. We developed a multispecialty program of education and worked with groups from a multisite community-based teaching hospital and a comprehensive rehabilitation network. We used a demographic questionnaire and pre- and postintervention testing. Participants consistently scored higher on the postsession (89.70 ± 8.09%) than on the presession (76.50 ± 17.61%) questionnaire (P <.001). No statistically significant differences were found in percentage points improved across level of education, previous training status, experience in caring for MS patients, or position classification. Ninety-five percent of participants responded that the information provided through the session related to their current role as part of a multidisciplinary health care team. In conclusion, this format was useful in providing key knowledge about the biological, psychological, and social care of patients with MS. A targeted educational program for health care practitioners should become part of the curriculum offered by MS centers to enhance the care provided to their patient population. Int J MS Care. 2007;9: Multiple sclerosis (MS) is a common longterm health care problem that is complex in treatment and monitoring and becomes a lifelong issue for patients. More than 200,000 people are estimated to have MS in the United States alone. 1 Comorbidities are common with MS, and hospitalization rates are higher for this population than for agematched individuals without MS. 2 During their often prolonged disease course, patients interact with physicians, nurses, therapists, psychologists, and other health care practitioners (HCPs). 3,4 Guidelines for MS care explicitly recommend a team approach to MS, in which members of the team provide a consistent message for patients about the disease and consistent educational strategies are used. 5 The World Health Organization defines health as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. 6 From Lehigh Valley Hospital and Health Network (AR-G, SRK, NE); Good Shepherd Rehabilitation Hospital (RS, DK); and Multiple Sclerosis Center of the Lehigh Valley (MB), Allentown, PA, USA. Patients with MS have unique biopsychosocial needs that extend well beyond a strictly medical model of care. 7,8 Comorbid problems that may complicate life health issues of MS patients include cognitive dysfunction, depression, fatigue, bowel and bladder dysfunction, spasticity, tremor, and seizures. Bowel and bladder dysfunction are considered common comorbid conditions in patients with MS. 9 Epileptic seizures, motor or sensory paroxysmal attacks, and spasticity may also be frequently experienced by MS patients. 9 The literature suggests that an estimated 34 65% of MS patients have cognitive impairment; common abnormalities are abstract conceptualization, recent-memory information processing, and attention deficit In MS patients, depression is considered to correlate with cognitive dysfunction and have a negative effect on daily problemsolving and coping skills. 13,14 Function of daily activities may also be compromised by MS-related fatigue and sleep disturbances. 15,16 Patients with MS contact HCPs under varied circumstances, often not within the walls of an MS center. These HCPs must be educated in the biopsychosocial aspects of MS care that go 148

2 beyond the mechanics of the disease. Acknowledging this need is the first step toward providing the additional care that MS patients require. The Multiple Sclerosis Center of Lehigh Valley Hospital and Health Network (LVHHN; Allentown, PA, USA) developed a multidisciplinary task force made up of a psychologist, neurologist, social worker, physiatrist, and MS specialty nurse. The group developed an educational event targeted at the needs of HCPs other than physicians when caring for the MS patient. In keeping with our mission to improve the information, care, and services available for people with MS in the Lehigh Valley and surrounding areas, we were interested in developing an intervention focused on HCP needs in various medical care institutions. The purpose of the educational session was to facilitate HCP awareness of distinctive medical and psychosocial considerations in care management of people with MS. In addition, we were also interested in identifying what HCPs perceived as their gaps in caregiving knowledge and skills. The program was offered to HCP groups from LVHHN and Good Shepherd Rehabilitation Center (GSRC). LVHHN is a multisite community-based teaching hospital in southeast Pennsylvania. GSRC is a comprehensive rehabilitation network providing inpatient and outpatient services. Materials and Methods The one-time educational session was sectioned into six primary focus areas: general medical information about MS, treatment issues, adjustments to the diagnosis, psychiatric and cognitive aspects of MS, nursing issues, and rehabilitation issues. Five health professionals representing neurology, psychology, social work, nursing, and physiatry presented the program. (See box for program outline.) Faculty used evidence-based medicine and case studies to disseminate knowledge and a question/ answer session for clarification. The educational session was presented separately to HCP cohorts of long-term care, neurosciences, and rehabilitation disciplines. Continuing education units (CEUs) were not offered. Program evaluation was based on the assumptions that a training and empowerment intervention is most effective when it is relative to the participants needs and that knowledge acquisition is most effective when it is applied to satisfy those needs. 17 The evaluation plan recognized the program as a pilot and used both formative and summative evaluation designs. Summative evaluation focused on the degree to which objectives were met; formative evaluation focused on refining the training process. Evaluation consisted of a baseline registration form, presession questionnaire, postsession questionnaire, session assessment, and knowledge application follow-up survey. The purpose of the baseline registration form was to obtain participant-identified needs relative to position responsibilities for program customization appropriate to each cohort, as well as participant background information. In addition to basic demographic information, participants were asked about their education and experiences relative to the care and management of MS patients. The process of preregistration was also intended to foster attendance commitment. A 30-item questionnaire was administered before and after the session. The primary purpose of this questionnaire, which was cowritten by program faculty, was to incite participants interest and identify common knowledge, including misconceptions and misunderstandings about MS. The questionnaire addressed factors of the biopsychosocial model separately and together: 18 (60%) of the questions were medical, 3 (10%) were psychological, 2 (7%) were social, and 7 (23%) represented the interplay of biopsychosocial factors. In keeping with the theoretical basis of the biopsychosocial model as outlined by White, 7 bio (medical) was conceptualized as biological functions, including pharmacotherapy and clinical course; psycho (psychological) was conceptualized as cognitive and behavioral functions; and social included issues of social capital and quality of life, including social institutions. 7,8 To prevent participants from studying answers in advance, the questionnaire was distributed without prior notice and at the beginning of the educational session. The primary focus was on care and management of patients with MS. The questionnaire contained 24 case-based multiple-choice questions and two hypothetical case studies. Correct responses were de - termined by established guidelines for MS care. 5 The presession questionnaire also served as a baseline measurement. The same questionnaire was administered immediately after the session as a concluding measurement to identify knowledge changes augmented by the program. The purpose of the session assessment was to gauge participants subjective perspective of program value relative to time invested, identify participant needs not 149

3 addressed by the program, and develop an estimate of whether program information acquired would be applicable to the participants position responsibilities. Approximately 4 6 months after the session, a followup knowledge application survey was mailed to all participants. The follow-up survey was intentionally limited to one page to encourage completion. Data were analyzed via SPSS (SPSS 11.5, Chicago, IL, USA). Parametric statistical tests of paired samples t, analysis of variance, and Pearson correlation were used to analyze data with known normal distribution, minimum of interval scale, and adequate sample size. Nonparametric tests of χ 2 and Spearman ρ were used as appropriate. 18,19 Power was calculated as one sided with Powercalc supported by the University of California, Los Angeles, Department of Statistics (available at calculators.stat.ucla.edu/powercalc/). Results Of the 60 HCPs attending the education sessions, 86.7% (52) indicated their position as direct patient care, and the remaining indicated patient care support. All participants were women. The largest represented age category was years (43.3%), followed by years (36.7%), years (16.7%), and 65 years (3.3%). The time spent working in health care ranged from <1 to 44 years (mean [standard deviation (SD)] [11.08] years). Sixty-seven percent of participants (38) held at least a 4-year college degree. Most participants (69.5%) indicated no previous training in MS care. Seventy-three percent indicated some or a lot of experience in caring for patients with MS (58% Allied Health Professional Guide to MS: An Education Program At the conclusion of the course, the participants should 1. Understand the steps in adjusting to the diagnosis of multiple sclerosis (MS) and methods to assess and support this process. 2. Have knowledge of the pathophysiology, clinical characteristics, diagnosis, treatment, and symptom management of MS. 3. Be conversant with the goals of rehabilitation for MS, including prescriptions for assistive devices, treatment of spasticity, and rehabilitation programming. 4. Understand the cognitive and emotional challenges associated with MS and strategies to treat these issues. 5. Be aware of the role of nursing in supporting, counseling, educating, and managing symptoms of MS. Program themes 1. Adjustment to the diagnosis of MS a. Understanding adjustment dynamics b. Importance of the adjustment process c. Assessment d. Providing psychosocial support e. Models for healthy and unhealthy adjustment 2. Clinical aspects of MS a. Pathophysiology (inflammation, demyelination, conduction block, axonal transaction) b. Epidemiology c. Clinical symptoms and signs d. Diagnosis, including magnetic resonance imaging, evoked potentials, cerebrospinal fluid, laboratory studies e. International classification f. Definition of exacerbation g. Pregnancy h. Prognosis i. Immune-modulating therapies j. Steroids k. Symptom management (spasticity, pain, neurogenic bladder, fatigue, depression, cognitive dysfunction) 3. Rehabilitation issues in MS a. Defining rehabilitation goals b. Prescriptions for orthotics, assistive devices, wheelchairs c. Pros and cons of various rehabilitation settings d. Spasticity management e. Bowel and bladder rehabilitation programs 4. Cognitive and emotional challenges with MS a. Aspects of cognitive dysfunction in MS b. Variations in cognitive deficits in MS c. Depression in MS d. Influences in emotional coping with MS e. Behavioral and personal factors affecting MS f. Coping and counseling for cognitive and emotional disorders with MS 5. Nursing implications of MS a. Evaluating the framework of support (family, work, friends, community) b. Patient education role c. Injection instructions d. Fatigue counseling and management e. Side effects of medications f. Heat sensitivity and treatment g. Urinary issues h. Comorbidity counseling (eg, surgery, diabetes, obesity) 150

4 and 15%, respectively); 27% had minimal or less ex - perience with MS. The most common participantanticipated session outcome was to better help MS patients cope with MS. This response was to the question, How may we help you achieve your goals for this course? Presession Questionnaire Findings Mean correct response rate on the presession questionnaire was 76.5% (SD 17.6%). Participants reporting previous training in MS care (77.41% [17.25]) were not significantly more likely to have a higher percentage correct than those without (77.97% [13.50%]; P =.904, power = 0.054). Those currently working in direct patient care roles (77.5% [17.53%]) were more likely to have a higher percentage of correct questionnaire responses than those in patient support roles (70.00% [17.91%]; not significant at P =.297, power = 0.199). A weak negative correlation was found between percentage correct on the presession questionnaire and years worked in health care (r = 0.187, P =.152). The five most missed questions of the presession questionnaire were medical in focus. Participants highest averaged presession score of correct responses was in social (92.50% [22.22%]), followed by biopsychosocial (82.62% [20.05%]), and psychiatric (78.89% [24.52%]) aspects of MS care. Comparison of Pre- and Postsession Questionnaires Participants consistently scored higher on the postsession (89.7% [8.09%]) than on the presession (76.5% [17.61%]) questionnaire (P <.001, power = 0.98). Cohorts in session 1 improved by 15, those in session 2 by 11, and those in session 3 by 13 percentage points (P =.758), indicating consistency of the intervention across groups No statistically significant differences were found in percentage points improved across level of education, previous training status, experience in caring for MS patients, or position classification (Figures 1 3). Session Assessment Findings At the end of each session, participants were asked to complete and return a session assessment. The return rate was 68.3% (41) for postsession assessments. On a scale of 1 (poor) to 6 (great), 75.6% (31 participants) indicated 6 when asked to rate whether the session was a good use of their time. The remaining 24.4% gave a 5 rating. All participants responded that the session Percent High school/ some college Figure 1. Improvement in health care practitioner scores on post- vs presession responses, by level of education. No statistically significant difference was found between level of education and percentage improvement at P =.301. provided new information or ideas that were applicable to their responsibilities. Four participants felt the information was repeated information across topics. Five participants requested additional information about specific topics such as medication interactions, treatment protocol, and research findings. Approximately 4 6 months after the session, a follow-up knowledge application survey was mailed to all participants, of whom 33.3% (20) responded. Eight Percent No training Undergraduate degree Improvement Presession Graduate work/ degree Previous training Improvement Presession Figure 2. Improvement in health care practitioner scores on post- vs presession responses, by previous training status. No statistically significant difference was found between having previous training in multiple sclerosis care and percentage improvement at P =

5 Percent Improvement Presession Minimal experience Some experience Much experience Figure 3. Improvement in health care practitioner scores on post- vs presession responses, by experience in caring for multiple sclerosis patients. No statistically significant difference was found between level of experience and percentage improvement at P =.055. (20%) of the nonresponding participants had changed jobs and were not reachable. Of the responders, 95% (19) responded that the information provided through the session related to their current role as part of a multidisciplinary health care team. Eleven participants (55%) indicated that they were currently serving as a primary caretaker for someone diagnosed with MS. Discussion HCPs other than physicians are an integral part of the spectrum of care for MS patients. Because of their different educational backgrounds and training, they might have differed in response to a standardized educational intervention. However, this programmed multi - disciplinary MS education session seemed to be effective (knowledge gained) and applicable (knowledge applied) regardless of the participants level of education, previous training in MS care, experience with MS patients, or position responsibilities (direct/indirect patient care). Most participants in our sessions said they came to learn to help their patients cope (psychosocial factor); however, the presession questionnaire suggested that they came into the session most qualified in this area (92.5% correct) and least qualified in medical knowledge (72.8% correct). Because no CEU credits were associated with this educational session, participants presumably attended out of personal interest. More than 50% of the 20 follow-up responders revealed themselves as primary caretakers for someone diagnosed with MS, which may explain the greater knowledge base in psychosocial issues related to diagnosis and treatment than in medical issues. A limiting factor in this study was that findings may have been different for a participant population that was attracted through earned CEU credit. This program was well received and caused a positive change in the educational base for the participants. The lessons learned had impact months after the intervention. The results of this pilot study were reflective of the local medical community. Additional limitations were the small sample size and the >50% attrition in followup responders. HCPs other than physicians are important members of the health care team. Directed educational programs for this group may be beneficial in treating MS from diagnosis to demise. A targeted educational program for nurses and allied health professionals should be - come part of the curriculum offered by MS centers to enhance the care provided to their patients. References 1. Noonan CW, Kathman SJ, White MC. Prevalence estimates for MS in the United States and evidence of an increasing trend for women. Neurology. 2002;58: Somerset M, Campbell R, Sharp DJ, Peters TJ. What do people with MS want and expect from health-care services? Health Expect. 2001;4(1): Battaglia MA, Zagami P, Uccelli MM. A cost evaluation of multiple sclerosis. J Neurovirol. 2000;6(suppl 2):S191 S Crayton H, Heyman RA, Rossman HS. A multimodal approach to managing the symptoms of multiple sclerosis. Neurology. 2004; 63(suppl 5):S12 S Multiple Sclerosis: Management of Multiple Sclerosis in Primary and Secondary Care. London, UK: National Institute for Health and Clinical Excellence. Available at: guidance.nice.org.uk/cg8. 6. Constitution of the World Health Organization. Geneva, Switzerland: World Health Organization. Available at: eb/who_constitution_en.pdf. 7. White P. Biopsychosocial Medicine: An Integrated Approach to Understanding Illness. New York: Oxford University Press; Putnam RD. Bowling Alone: The Collapse and Revival of American Community. New York: Simon & Schuster; Krupp LB, Rizvi SA. Symptomatic therapy for underrecognized manifestations of multiple sclerosis. Neurology. 2002;58(suppl 4): S32 S Amato MP, Ponziani G, Siracusa G, Sorbi S. Cognitive dysfunction in early-onset multiple sclerosis: a reappraisal after 10 years. Arch Neurol. 2001;58: Deloire MS, Salort E, Bonnet M, et al. Cognitive impairment as marker of diffuse brain abnormalities in early relapsing remitting multiple sclerosis. J Neurol Neurosurg Psychiatry. 2005;76: Rao SM, Leo GJ, Bernardin L, Univerzagt F. Cognitive dysfunction in multiple sclerosis. I. Frequency, patterns, and prediction. Neurology. 1991;41:

6 13. Arnett PA, Higginson CI, Voss WD, Bender WI, Wurst JM, Tippin JM. Depression in multiple sclerosis: relationship to working memory capacity. Neuropsychology. 1999;13: Siegert RJ, Abernethy DA. Depression in multiple sclerosis: a review. J Neurol Neurosurg Psychiatry. 2005;76: Rao SM, Leo GJ, Ellington MS, Nauertz T, Bernardin L, Unverzagt F. Cognitive dysfunction in multiple sclerosis. II. Impact on employment and social function. Neurology. 1991;41: Attarian HP, Brown KM, Duntley SP. The relationship of sleep disturbances and fatigue in multiple sclerosis. Arch Neurol. 2004;61: Fals-Borda O, Rahman MA. Action and Knowledge: Breaking the Monopoly With Participatory Action-Research. New York: Apex Press; Fetterman D. Foundations of Empowerment Evaluation. Thousand Oaks, CA: Sage Publications; Siegel S, Castellan NJ Jr. Nonparametric Statistics for the Behavioral Sciences. 2nd ed. Boston, MA: McGraw-Hill; Acknowledgments: The authors thank the staff of the Multiple Sclerosis Center of the Lehigh Valley and the study participants. This study was supported by the Anderson Educational Trust, Allentown, PA, USA. 153