Health-Related Quality of Life Among Young Adults with Multiple Sclerosis

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1 Health-Related Quality of Life Among Young Adults with Multiple Sclerosis Robert J. Buchanan, PhD; Chunfeng Huang, PhD; Michael Kaufman, MD Multiple sclerosis (MS) is an unpredictable disease that can have physical, psychological, and social impacts, reducing health-related quality of life (HRQOL). The objective of this study was to identify factors associated with HRQOL among young adults with MS. Survey data were collected from 100 people with MS aged 18 to 31 years, with 93 participants providing all data needed for analyses of our regression models. The survey cohort was recruited from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry (now the NARCOMS/Global Patient Registry). Multiple linear regression models were used to analyze the data, with the Physical Component Summary and the Mental Component Summary of the 8-item Short Form Health Status Survey serving as dependent variables. Independent variables were other survey responses, including demographic, disease, and treatment characteristics. The results indicated that full-time employment, relapsing-remitting course of MS, and satisfaction with access to MS-focused care were associated with better physical dimensions of HRQOL. Conversely, MS symptoms that interfered with daily life and perceptions of not having as good a social life as other people of comparable age were linked to poorer physical dimensions of HRQOL. Worsening MS symptoms, not having as good a social life as other people of comparable age, and seeing a mental health professional in the previous 12 months were associated with poorer mental dimensions of HRQOL. Our study highlights the association of MS-focused care with better physical dimensions of HRQOL among young adults with MS. Int J MS Care. 2010;12: Multiple sclerosis (MS) is the most common disabling neurologic disease among younger adults in the United States, with between 350,000 and 400,000 Americans diagnosed. 1,2 The disease is a demyelinating illness of the central nervous system that can lead to a range of symptoms, including spasticity, movement disorders, fatigue, bladder and bowel dysfunction, pain, depression, visual disorders, cognitive difficulties, and dysphagia. 3 The clinical course of MS typically is characterized by either episodic acute periods of worsening condition (relapses, exacerbations, or attacks), gradual progressive deterioration, or both. 4 Episodes of neurologic symptoms are often followed by fixed neurologic deficits. 5 However, the progress and severity of MS symptoms are unpredictable and vary From the Department of Political Science and Public Administration, Mississippi State University, Mississippi State, MS, USA (RJB); Department of Statistics, Indiana University, Bloomington, IN, USA (CH); and Multiple Sclerosis Center, Carolinas Medical Center, Charlotte, NC, USA (MK). Correspondence: Robert J. Buchanan, PhD, Department of Political Science and Public Administration, PO Box PC, Mississippi State University, Mississippi State, MS 39762; rjb161@ps.msstate.edu. among individuals, with the degree of limitation of activities also varying. 6,7 Most people are diagnosed with MS between ages 20 and 50 years, although the disease also occurs in children and older adults. 1 Data from the Sonya Slifka Longitudinal Multiple Sclerosis Study and the North American Research Committee on Multiple Sclerosis (NAR- COMS) Registry (now the NARCOMS/Global Patient Registry) indicate that the average age at diagnosis is between 37 and 38 years. 8,9 About 28% of participants in the NARCOMS Registry were diagnosed with MS at 30 years of age or younger. 10 Onset of MS at an older age tends to be associated with primary progressive disease (PPMS), while onset before age 30 typically begins as relapsing-remitting MS (RRMS) Younger age at onset, female gender, and relapsing-remitting course are linked to a more favorable prognosis, while older age at onset, male gender, and progressive course are associated with a less favorable course. 15,16 Health-Related Quality of Life Multiple sclerosis can have physical, psychological, and social impacts, 17 while the unpredictability of the 190

2 Quality of Life Among Young Adults with MS disease may cause stress that can negatively affect the patient s quality of life (QOL). 18 Quality of life reflects total well-being, including measures of social roles, physical health, emotional status, social interactions, intellectual function, and self-perceptions of health. 19 Healthrelated quality of life (HRQOL) is a multidimensional construct that includes aspects of life quality or function affected by health status, such as physical health and symptoms, psychosocial factors, and psychiatric conditions. 17,18,20-22 This construct provides a broader measure of disease burden than physical impairment or disability level, 23 approximating the World Health Organization s definition of health as including physical, mental, and social well-being and not just the absence of disease or infirmity. 19 Chronic illnesses such as MS have multidimensional impacts, affecting physical and social function as well as emotional well-being. 24 Measures of HRQOL record patients perceptions of their overall health and how their health affects their daily lives. 25 A study of QOL measures in MS research found that the use of QOL questionnaires provided a more comprehensive measure of the impact of MS than relying solely on assessments of physical impairment or disease activity and effects. 26 People with MS tend to rate aspects of their HRQOL lower than do people in the general population and even those with other chronic conditions The objective of this pilot study funded by the National Multiple Sclerosis Society (NMSS) was to identify factors affecting HRQOL in young adults with MS, defined as people between ages 18 and 31, as they leave their parental nuclear families, complete their education, establish their careers, form adult relationships, and start households of their own. HRQOL and MS Previous studies analyzing HRQOL among people with MS included adults across the age spectrum and identified a range of demographic factors, MS disease characteristics, and treatments affecting mental and physical dimensions of HRQOL. We built on these previous studies to determine how the same characteristics affect the HRQOL of young adults with MS. In addition, a previous study found that young adults with MS were more likely than other adults with MS to use services provided by neurologists and receive their MSfocused care at MS clinics. 33 Are these treatment options linked to the HRQOL of young adults with MS? We wanted to identify factors associated with the physical and mental domains of HRQOL among young adults with MS, which will facilitate the development of ser- vices and programs addressing their health-care needs and help guide future study. Demographic Characteristics Men with MS were found to have higher HRQOL than women for various dimensions, such as physical role and emotional role limitations. 34,35 An HRQOL study in Scandinavia found that younger age was associated with higher social isolation scores among a subgroup of people with secondary progressive MS (SPMS). 36 The authors suggested that adjustment to MS may improve with age and that a lower level of acceptance among younger people with MS may lead to this social isolation. Another study, however, found that age was not associated with HRQOL among people with MS. 37 Employed people with MS were found to have higher HRQOL than those with employment problems or limitations. 17,34,38 Forbes et al. 17 theorized that factors contributing to problems with employment may also affect the ability of people with MS to perform daily activities. MS Characteristics The literature indicates that the clinical course of MS influences HRQOL, with progressive types of MS having a more negative association with HRQOL than RRMS. 18,35,39-41 The relationship between the duration of MS and HRQOL in people with MS is unclear: some studies have indicated that HRQOL improves over the course of the disease, and others have found that MS disease duration is inversely associated with aspects of HRQOL. 18,22,35,39 Multiple sclerosis related disabilities have been associated with lower HRQOL across many domains. 35,40,42 For example, people with MS who scored 3 or lower on the Expanded Disability Status Scale (EDSS) had better physical and mental domains of HRQOL than those who scored 6 or higher. 43 Care and Treatments Wu et al. 40 found that not having a usual provider of MS care was associated with worse physical domains of HRQOL, while difficulty obtaining mental health care and difficulty obtaining medical care were associated with lower mental health dimensions of HRQOL. Buchanan et al. 44 concluded that receiving MS care at an MS clinic was associated with better physical dimensions of HRQOL and having a neurologist as the principalcare physician was linked to better mental health dimensions of HRQOL among people with MS. Turner et al. 45 found that exercise was associated with better physical and mental health, concluding that physical activity and exercise programs should be integrated into chronic 191

3 Buchanan et al. illness management and programs that promote selfmanagement of MS. Research on the impact of interferon beta (IFNβ) or disease-modifying treatments on HRQOL in people with MS is inconclusive, with results ranging from worsening domains of HRQOL, to no effect, to significant improvement. 21,43,46 Mental Health Previous studies have found a strong relationship between depression or depressive symptoms in people with MS and HRQOL. 18,22,39,41,47-49 Spain et al. 50 observed that while depression was less prevalent among people with MS than anxiety, depression had a greater impact on HRQOL. Treatment of depression in people with MS has been shown to improve HRQOL. 49,51,52 Turpin et al. 53 found that illness intrusiveness in people with MS (defined as the degree to which MS interferes with important life domains) was the only MSspecific characteristic included in their analyses that was significantly associated with mental health dimensions of HRQOL. Casetta et al. 54 concluded that level of MSrelated disability affected the mental well-being of men with MS more than women, while Turpin et al. 53 found worse mental health dimensions of HRQOL among older men than among older women. In contrast, Schwartz and Frohner 24 found no significant relationships between the mental health dimension of HRQOL and gender, age, marital status, and years of education. Methods For this pilot study, we surveyed 100 young adults with MS who were born between 1976 and 1989 (aged 18 to 31 years when surveyed), recruited from the NAR- COMS Registry. (Ninety-three respondents provided all data needed for analyses of our regression models.) NARCOMS was initiated in 1993 by the Consortium of Multiple Sclerosis Centers (CMSC) to facilitate MS research, becoming the largest self-report registry of MS patients in the world. By March 2010 the Registry contained the names and contact information for 35,000 people with MS who had volunteered to participate in routine data collection and possibly other research projects. People with MS who are at least 18 years of age are invited to enroll in the Registry through direct mailings, MS centers, support groups, and the NARCOMS Registry website. 55 Participants are assured confidentiality and that their names will not be disclosed to other parties without the participant s written permission. Estimates place up to 10% of the American MS population in the NARCOMS Registry. 9 Institutional review board approval was received from the Office of Regulatory Compliance at Mississippi State University (study design and data analysis) and the Office of Research Compliance at Texas A&M University (interview administration). The Lone Star Chapter of the NMSS in Houston, Texas, recruited three young adults with MS during September 2007 to participate in the computer-assisted telephone interview process to assess the clarity and acceptability of survey questions. When this review was completed, no changes to the questionnaire or interview process were necessary. NARCOMS mailed letters in September 2007 to all 452 individuals in the NARCOMS Registry who were born in 1976 or later, inviting them to participate in this study. The recruitment letter described the purpose of the study and contained a toll-free number to call to complete the telephone interview, including times each day that interviewers were available. This letter also requested that the young adults be prepared to tell the interviewer their type of MS (with definitions provided), the practice specialties of any physicians they saw in the past 12 months, and any MS disease-modifying medications currently used (with a list of these drugs provided). The survey ended in November 2007, with 100 young adults completing the interview (participation rate of 22%). The study design dictated that the survey would end when no young adult called to be interviewed during a 2-week period. Telephone Interview Demographics and MS Disease Characteristics The interview, which averaged 25 minutes to complete, included questions on demographics, such as age, gender, marital status, employment, income, and health insurance coverage. These young adults with MS also were asked about their MS disease and symptoms, such as the type of MS, age when MS symptoms first appeared, and age at MS diagnosis. To assess how MS symptoms affected daily life, the interviewers asked participants if their MS symptoms in general affect your activities or lifestyle, with scales of 0 to 10 provided for responses. A response of 0 indicated that MS symptoms had no interference at all, and a response of 10 signified that your MS symptoms prevent you from doing many of your daily activities each day. The young adults were asked to compare their current MS symptoms with MS symptoms experienced 1 year earlier. 192

4 Quality of Life Among Young Adults with MS Physician Care The interviewer asked these young adults about the care they received from physicians, including their principal-care physician, defined in the NARCOMS recruitment letter and by the interviewer during the survey as the physician you see most often and who knows you best. The respondents were asked to identify the practice specialty of their principal-care physician (with the NARCOMS recruitment letter requesting that the young adult have this physician information available when calling to participate in the survey). The interviewer also asked how well the principal-care physician understood the medical aspects of MS and how MS symptoms affected the young adult s daily life, with a response of 0 indicating no understanding and a response of 10 indicating complete understanding. Participants were asked about their satisfaction with their ability to obtain needed MS-focused care and mental health care. For example, the interviewers asked them to use any number from 0 to 10 to rate their satisfaction with their ability to get needed MS-focused care in the past 12 months, with 0 indicating total dissatisfaction with access or not able to access this care and 10 indicating complete satisfaction with access. The interview adapted the various scales of 0 to 10 used in our survey from the Consumer Assessment of Health Care Providers and Systems (CAHPS) survey sponsored by the US Agency for Health Care Research and Quality. 56 The interviewers also asked the participants if they go to an MS clinic or health center that specializes in the care of people with MS for the majority of your MS-focused health care. Mental Health The interviewers asked participants if they had been diagnosed with depression at any time. If the young adult had received a diagnosis of depression in the past, the interviewers asked if he or she had received treatment and the type of treatment received. Treatment options for depression provided by the interviewer as possible responses during the interview were a combination of medications and counseling, counseling only, and medications only. The survey also included two questions that assessed current mood and loss of interest or pleasure in the preceding 2 weeks that Mohr et al. 57 found to reliably identify depressive symptoms in people with MS. The interviewer asked respondents whether they had 1) often been bothered by feeling down, depressed, or hopeless and 2) often been bothered by little interest or pleasure doing things. Based on the findings of Mohr et al., we used a positive response to either question to indicate the presence of current depressive symptoms. Feelings/MS Experiences The interview collected information from the young adults concerning their feelings about having MS, their experiences with the illness, and how they thought MS had affected various relationships based on their agreement or disagreement with a number of statements about MS. For example, the interviewers read the statement: I do not have as good a social life as most people my age because of my MS. The young adults selected from the following choices to respond: strongly disagree, disagree, neither agree nor disagree, agree, or strongly agree. Short Form Health Status Survey The interview also included the 8-item Short Form Health Status Survey (SF-8), which is designed to provide an HRQOL profile. 20,25,58,59 The SF-8 HRQOL profile consists of eight items as well as a Physical Component Summary (PCS) and a Mental Component Summary (MCS), which are positively scored, with higher scores indicating better health status. The SF-8 was designed as a shorter alternative to the SF-36 for use in large population-based surveys of general or specific populations. 20 It includes items representing the eight scales and the PCS and MCS also used in the SF ,59 Previous studies documented the validity of the SF-8 in the United States, 59 and the instrument meets standard evaluation criteria for content, construct, and criterionrelated validity. 20 Survey Nonparticipants Each recruitment letter sent to the young adults with MS included a unique identifier that allowed comparison of survey participants with nonparticipants (young adults who received a recruitment letter but did not call the toll-free number to complete the interview). The comparison used NARCOMS Registry data and was completed by NARCOMS staff to protect the privacy of Registry members. The only significant difference between participants and nonparticipants was in level of self-reported pain, with participants reporting less pain than nonparticipants. 33 No significant differences were found between participants and nonparticipants in terms of demographics (gender, age, and marital status), overall health, limits on activities, use of disease-modifying therapies, and MS-related symptoms (mobility, fatigue, bladder/bowel function, and spasticity). 193

5 Buchanan et al. Multiple Regression Models Multiple linear regression models were used to analyze our survey data. We used the stepwise selection procedure to reduce the number of independent variables in our regression models. This procedure eliminates the least significant independent variables from the original regression models, which included all independent variables we theorized might be associated with HRQOL in young adults with MS. The stopping rule in the stepwise selection procedure for inclusion or exclusion of independent variables from the regression model applies the standard significance level for testing of hypotheses (α =.05). Stepwise selection has the advantage of producing a small, readily interpretable model, containing the most important predictor variables. 60 The dependent variables in our analyses were the PCS and the MCS from the SF-8 survey, with PCS measuring physical health and MCS measuring mental health dimensions. The independent variables provide data on a range of characteristics collected in the survey of young adults with MS, including demographic characteristics, MS disease and health characteristics, and utilization of health and support services. The independent variables used in these initial analyses, with coding explained, are presented in Table 1. Many characteristics from the survey, theorized to have possible predictive power based on the literature review, were included as independent variables at the beginning of each regression analysis. The stepwise selection method excluded 13 independent variables from the PCS model, including demographic and mental health characteristics, as well as health and support services utilized. The final PCS regression model included five independent variables that are significant in predicting PCS at the level of a =.05. Statistical analyses of the MCS regression model also were performed, with independent variables initially included in the MCS model presented in Table 1. The stepwise selection method excluded 14 independent variables from the MCS model, including all demographic variables and most MS and health characteristics, as well as most health and support services utilized. Compared with the PCS, a different set of independent variables was obtained for the final MCS model that are significant at the level of α =.05. Results Table 2 provides descriptive statistics for the 93 young adults with MS included in our multiple regression models (those who provided complete data for the regression models during the interview). The average Table 1. Independent variables used in the quality of life analyses for young adults with MS Independent variable Sociodemographics Age Gender Married Full-time employment Income MS/health characteristics Relapsing-remitting MS Years with MS MS symptoms currently worse than 1 year ago MS symptoms affect activities or lifestyle Current depressive symptoms Have ever received a diagnosis of depression Not as good a social life as most people my age because of my MS Health and support services Neurologist as principal-care physician Principal-care physician understands how MS symptoms affect life Ability to get MS-focused care in past 12 months Go to MS clinic for MS care Sought access to a mental health professional in previous 12 months Taking disease-modifying medications at time of survey Description/coding of independent variable Age, using date of birth and 9/ = male; 1 = female 5 ascending categories of income Current age minus age when MS diagnosed 0 10 scale, with 0 = no interference; 10 = prevent performance of many daily activities each day a 1 = strongly disagree; 2 = disagree; 3 = neither agree nor disagree; 4 = agree; 5 = strongly agree (everyone else = no ) 0 10 scale, with 0 = no understanding; 10 = complete understanding a 0 10 scale, with 0 = total dissatisfaction; 10 = complete satisfaction a Abbreviation: MS, multiple sclerosis. a For the analyses this 0 10 scale was collapsed into three groups: 0 3 = 1; 4 7 = 2; and 8 10 =

6 Quality of Life Among Young Adults with MS age of the participants was 28.5 years, and their average duration of MS from diagnosis was 5.5 years. Almost 9 in 10 of these young adults had RRMS. About 53% had received a diagnosis of depression, 41% reported depressive symptoms in the 2 weeks preceding the telephone interview, and almost half had sought care from a mental health professional in the preceding 12 months. PCS Model A range of demographic characteristics of young adults with MS collected during the telephone interviews and presented in Table 1 were initially included in the PCS multiple regression model. The adjusted R 2 of indicates that the final PCS model has an excellent ability to explain the variability of the PCS among the participants. Most of these demographic characteristics were not significantly associated with the physical dimensions of HRQOL and were excluded from the final PCS model presented in Table 3. For example, we found that age, gender, marital status, and income had no significant association with the PCS in the initial model. However, full-time employment status was significantly and positively associated with the PCS. Several MS disease characteristics from the survey results were included in the initial PCS model. We observed that a relapsing-remitting course of MS was significantly associated with higher physical dimensions of HRQOL, as measured by the PCS. In contrast, participants who reported that their MS symptoms had greater interference with their ability to perform daily activities tended to have significantly lower physical dimensions of HRQOL. Typically, the more strongly the participants agreed that their social life was not as good as that of most people their age because of their MS, the lower their PCS scores. However, we found no significant association in the initial model between the duration of MS, the presence of current depressive symptoms, or worsening MS symptoms over the preceding year and the PCS. The PCS multiple regression model included survey results on health and support services utilized. Participants who reported higher levels of satisfaction with their ability to obtain needed MS-focused care tended to have significantly higher physical dimensions of health. However, having a neurologist as the principalcare physician (the physician seen most often and who knows the person with MS best), seeing a mental health specialist in the preceding 12 months, and receiving disease-modifying therapies for the treatment of MS were not significantly associated with the PCS in the initial Table 2. Demographics, MS characteristics, and health and support services Independent variable Value Sociodemographics Age, mean (SD), y 28.5 (2.26) Female 92.5 Married 44.1 Full-time employment 54.8 Income, $ <25, ,000 49, ,000 74, ,000 99, , MS/health characteristics Relapsing-remitting MS 88.2 Duration of MS, mean (SD), y 5.5 (3.16) MS symptoms worse than 1 year ago 29.0 MS symptoms affect daily life Group 1 (survey response of 0 3) 48.4 Group 2 (survey response of 4 7) 40.9 Group 3 (survey response of 8 10) 10.8 Current depressive symptoms 40.9 Received a diagnosis of depression 52.7 Not as good a social life as other people my age because of MS Strongly disagree 22.6 Disagree 29.0 Neither agree nor disagree 3.2 Agree 33.3 Strongly agree 11.8 Health services Neurologist is principal-care MD 49.5 Principal-care MD understands how MS symptoms affect life Group 1 (survey response of 0 3) 10.8 Group 2 (survey response of 4 7) 21.5 Group 3 (survey response of 8 10) 67.7 Ability to get MS-focused care in the previous 12 months Group 1 (survey response of 0 3) 11.8 Group 2 (survey response of 4 7) 16.1 Group 3 (survey response of 8 10) 72.0 Go to MS clinic for MS care 46.2 Sought access to a mental health professional in previous 12 months Taking disease-modifying medications at time of survey Abbreviations: MS, multiple sclerosis; SD, standard deviation. Note: Unless otherwise indicated, data are given as percentage. 195

7 Buchanan et al. Table 3. Factors associated with HRQOL among young adults with MS Independent variable Coefficient estimate SE P Physical Component Summary (PCS) model Full-time employment Relapsing-remitting MS MS symptoms affect activities or lifestyle <.001 Not as good a social life as other people my age because of MS <.001 Ability to get MS-focused care in previous 12 months PCS model, adjusted R 2 = Mental Component Summary (MCS) model MS symptoms worse than 1 year ago <.001 Not as good a social life as other people my age because of MS <.001 Saw a mental health professional in past 12 months MCS model, adjusted R 2 = Abbreviations: HRQOL, health-related quality of life; MS, multiple sclerosis; SE, standard error. model. Similarly, receiving the majority of MS-focused care at a clinic or health center specializing in the care of people with MS and how well the principal-care physician understood the effects of MS symptoms on daily life were not significantly linked to the PCS in the initial model. MCS Model Several demographic characteristics of participants were included in the initial MCS multiple regression model, with none significantly associated with the mental dimensions of HRQOL. The adjusted R 2 of indicates that the final MCS model has good ability to explain the variability of the MCS among the young adults with MS in our study. We found no significant association between age, gender, marital status, full-time employment, or income and the MCS in the initial model (Table 3). Young adults who reported that their MS symptoms were worse than 1 year earlier tended to have significantly lower mental dimensions of HRQOL, as measured by the MCS. Similarly, agreement that their social life was not as good as that of most people their age because of their MS was significantly associated with lower mental health related HRQOL. The type of MS, the duration of MS, a diagnosis of depression at any time during the respondent s life, and how MS symptoms affected daily life were not significantly associated with the MCS in the initial model. Young adults who reported seeing a mental health professional in the 12 months preceding the interview tended to have significantly lower mental dimensions of HRQOL, as measured by the MCS. None of the other health and support services in the initial model present- ed in Table 1 was significantly associated with mental health dimensions of HRQOL. Discussion A review of the literature revealed no previous studies of HRQOL among young adults with MS. Our study builds on findings of previous studies analyzing factors associated with HRQOL among adults with MS of various ages to determine whether and how these demographic, MS disease, and treatment characteristics affect the HRQOL of young adults with MS. Consistent with earlier studies, we found that young adults with MS rated their HRQOL lower than did the general US population ,31 Our results of significant associations of full-time employment, course of MS (relapsing-remitting), and MS symptoms with the physical dimensions of HRQOL among young adults with MS, as measured by the PCS, are consistent with previous studies of people with MS of all ages. Unlike previous studies, however, we found no association between depressive symptoms and the physical dimensions of HRQOL. Given the large preponderance of females in our study, it is not surprising that we found no significant relationship between gender and HRQOL. Importantly, we found a significant positive association between satisfaction with the ability to obtain needed MS-focused care and physical dimensions of HRQOL in young adults with MS. Typically, MSfocused care provides access to a physician or group of specialists with a comprehensive knowledge of the multifaceted problems that people with MS encounter. Comprehensive MS-focused care integrates the expertise of many different health-care professionals, including 196

8 Quality of Life Among Young Adults with MS neurologists, nurses, rehabilitation specialists (including physiatrists), ophthalmologists, urologists, orthopedists, physical therapists, occupational therapists, speech/language pathologists, mental health specialists, social workers, and dietitians. The ultimate goal of MS-focused care is comprehensive, coordinated care designed to manage the disease and promote function, independence, health, and wellness. 61 For example, MS-focused care and this diverse team of experts can integrate appropriate exercise patterns and physical activity into comprehensive treatments that Turner et al. 45 found improved mental health and QOL among people with MS. People with MS also can access a range of needed specialists and specialty care through MS centers, although this is uncommon even at the largest MS centers. Most MS centers do not have on-site specialty providers to address the symptoms of MS that involve a variety of organ systems, but have established relationships with subspecialists to whom referrals are made to provide comprehensive care. These subspecialists include physiatrists, orthopedists, psychiatrists, neuro-urologists, and neuro-ophthalmologists, as well as allied providers such as occupational therapists, speech therapists, physical therapists, social workers, and psychologists experienced with the treatment of patients who have chronic diseases. More than 200 MS centers in the United States, Canada, and Europe are members of the CMSC, which provides continuing medical education to promote the MS clinical expertise of its members. 62 We found that having worse MS symptoms than a year earlier, perceptions of not having as good a social life as other people their age because of MS, and being treated by a mental health professional in the preceding 12 months were significantly associated with lower mental health dimensions of HRQOL among young adults with MS, as measured by the MCS. Buchanan et al. 44 theorized that recent negative changes in disability level may be more important psychologically and affect the mental health domains of HRQOL more than the absolute level of physical disability. MS-related factors contributing to problems with their social life may also negatively affect the physical and mental dimensions of HRQOL of these young adults with MS. Our analyses demonstrate that young adults who saw a mental health professional in the preceding 12 months tended to have significantly lower scores on the MCS. A recent mental health episode could require mental health care, and this mental health episode would negatively affect the mental health dimensions of HRQOL. 44 In other words, people with a recent psychiatric disorder are more likely to visit mental health professionals. 63 Limitations This pilot study surveyed 100 young adults with MS, with 93 respondents providing complete data needed for our regression models. Our survey sample was selected from the NARCOMS Registry. Participation in this registry is voluntary, and participants may not represent the entire MS population in the United States. However, the Registry population is large, with participants having comparable age at onset of MS symptoms and similar demographic characteristics to people with MS in the Sonya Slifka Longitudinal Multiple Sclerosis Study and the National Health Interview Survey. 8,9,64 Our survey collected self-reported data (eg, type of MS, practice specialties of physicians, or use of medications), which have limitations. However, we attempted to minimize any self-reporting problems by asking in the NARCOMS recruitment letter that the young adults be prepared to discuss during the interview their type of MS (with definitions provided), the practice specialty of the physician they see most often and who knows them best, and any MS disease-modifying medication they were currently taking. Another limitation of our study is the low response rate (22%), with possible sample bias if participants differ from nonresponders. The possibility of an unrepresentative sample would limit the inferences and conclusions we can draw from our results and apply to the larger population of young adults with MS. Hence, caution must be used when interpreting the results and PracticePoints More than 40% of the young adults in this study reported depressive symptoms in the 2 weeks preceding a telephone interview, highlighting the need for mental health screening and care among young adults with MS. Young adults who reported that their MS symptoms were worse than they were 1 year earlier tended to have significantly lower mental dimensions of health-related quality of life (HRQOL). Young adults who reported higher levels of satisfaction with their ability to obtain MS-focused care tended to have significantly higher physical dimensions of HRQOL. To improve care and outcomes for young adults with MS, future research should identify the components of MS-focused care that have the greatest beneficial impact on HRQOL. 197

9 Buchanan et al. applying conclusions of our study to the larger population of young adults with MS. However, this is a pilot study intended to identify areas for future research on HRQOL among young adults with MS, including how health, treatment, social, and cultural factors affect QOL in this population. Although we cannot establish with certainty that our sample is representative of young adults with MS in the United States, consistency is observed for a number of demographic and MS characteristics between our sample and other young adults with MS in the NARCOMS Registry who did not reply to our recruitment letter. Analysis of Registry data revealed no significant differences between these two groups of young adults with MS in terms of gender, age, marital status, and overall health. 33 Nor were there significant differences between these two groups in how physical health and emotional problems limit activities or how most MS symptoms affect disability. The only significant difference between these two groups was in self-reported pain, with a larger proportion of participants in our study reporting no problems with pain or minimal problems with pain that do not interfere with activities. To the extent that pain adversely affects HRQOL, 65 the nonresponder group may have demonstrated lower domains of HRQOL. Our PCS model explains much more of the variability (adjusted R 2 = ) of physical dimensions of HRQOL among the young adults in our study than our MCS model (adjusted R 2 = ) explains the variability of mental dimensions of HRQOL. Similar to the methodological conclusions of Pfaffenberger et al., 35 we found that demographic and MS-specific characteristics and health and support services utilized included in our analyses explain less variability of the mental dimensions of HRQOL than they do the physical dimensions. Similar to our results, Spain et al. 50 found fewer factors associated with the mental health dimension than with the physical domains of HRQOL. Conclusion Our study highlights the association that MS-focused care has with better physical dimensions of HRQOL among young adults with MS. This positive relationship of satisfaction with the ability to get needed MSfocused care in the past 12 months with the physical domain of the HRQOL is unexpected. One possible explanation for this association is that MS-focused care results in a positive change in physical adaptation from baseline that causes patients to view their physical HRQOL (PCS) in more positive terms. To improve the care and outcomes of young adults with MS, future research should identify which components of MS-focused care have the greatest beneficial impact on HRQOL. o Acknowledgments: We thank Dr. Patricia O Looney, Vice President, Biomedical Research Programs, Dr. Nicholas LaRocca, Associate Vice President, Health Care Delivery and Policy Research Program, and Dorothy Northrop, National Director of Clinical Programs, at the National Multiple Sclerosis Society for their assistance with this research. We are especially grateful to the young adults who participated in the study and completed the telephone interview. Without their cooperation and input, this study could not have been conducted. Financial Disclosures: The authors have no conflicts of interest to disclose. Funding/Support: This work was supported by a Pilot Research Award (PP 1349) from the National Multiple Sclerosis Society. References 1. National Multiple Sclerosis Society. 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