Online. Rates of Adherence to Neuropsychological Recommendations Among Patients with. Multiple Sclerosis

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1 Rates of Adherence to Neuropsychological Recommendations Among Patients with Multiple Sclerosis Marnina Stimmel, MA; Shaina Shagalow, BA; Elizabeth K. Seng, PhD; Jeffrey G. Portnoy, MA; Roseann Archetti, BA; Elana Mendelowitz, MA; Jessica Sloan, MA; Jason Botvinick, MA; Lisa Glukhovsky, MA; Frederick W. Foley, PhD From the Ferkauf Graduate School of Psychology, Yeshiva University, Bronx, NY, USA (MS, SS, EKS, JGP, RA, EM, JS, JB, LG, FWF); Saul R. Korey Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA (EKS); and Multiple Sclerosis Comprehensive Care Center, Holy Name Medical Center, Teaneck, NJ, USA (FWF). Correspondence: Marnina Stimmel, 705 Chestnut Ave Apt. B, Teaneck, NJ 07666; Running head: Adherence to Neuropsychological Recommendations DOI: / Consortium of Multiple Sclerosis Centers. 1

2 Practice Points We completed phone interviews of 45 MS patients to determine if they had followed-up on the recommendations made following neuropsychological testing. We found that a minority of patients had followed the recommendations, particularly when they involved cognitive rehabilitation. Recommendations involving psychotropic medications were more consistently followed. Patients who remembered at least some of the recommendations and patients who received both a written report and a phone call with results of neuropsychological testing had higher rates of adherence. Adherence to recommendations may be improved by providing written and phone feedback, explaining the recommendations in depth, helping patients navigate insurance or finding a provider, and by having patients repeat back their recommendations. 2

3 Abstract Background: Adherence to non-medication recommendations is typically low, as seen in various health populations. Adherence to treatment recommendations made following neuropsychological testing has not been assessed in multiple sclerosis (MS). This study evaluated adherence and reasons for non-adherence. Additionally, the relationship between adherence to recommendations and various other factors were evaluated. Methods: Of 66 patients seen for neuropsychological testing at an MS center in Teaneck, NJ, in , 55 were eligible for this study. Forty-five patients were reached (mean age: 43.4 years; 75.6% women), and all agreed to a phone interview involving questions regarding adherence to treatment recommendations. Other information was obtained through retrospective chart review. Results: Overall self-reported adherence to recommendations made from neuropsychological testing was 38%. Adherence rate varied depending on recommendation type. Psychopharmacological management had the highest rate (80%), while referrals for cognitive rehabilitation had the lowest (6.5%). Reasons for non-adherence included needing more information and wishing to speak with one s physician regarding the recommendations. Adherence was associated with patients ability to spontaneously recall at least some of their recommendations and with receiving both a written report and a phone call with the results from testing. Conclusions: Adherence to recommendations made following neuropsychological testing is low. Points of intervention may be to give directed feedback for each recommendation and to provide both a written report and a phone call with results and recommendations. Additionally, asking a 3

4 patient to repeat back their recommendations may be a simple and efficient way to increase understanding and ultimately improve adherence. 4

5 Introduction As many as 70% of people with multiple sclerosis (pwms) experience mild to severe cognitive deficits, most commonly in processing speed, executive functioning, visual learning and memory. 1 Cognitive impairments impact quality of life 2 and employment status, 3 and are associated with anxiety and depression. 4,5 Comprehensive neuropsychological testing can identify areas of cognitive dysfunction and other moderating symptoms such as fatigue and psychiatric distress. 6,7 Most importantly, neuropsychological testing may yield recommendations for beneficial interventions, such as cognitive remediation, fatigue management, and psychiatric care. 8 In MS, literature is lacking on adherence rates to recommendations made following neuropsychological testing. While adherence to medication in pwms is adequate (65-80%), 9-11 literature from other populations suggests that adherence to non-medication recommendations is substantially lower Adherence to treatment recommendations is likely beneficial to pwms as with other populations, 15 but data is insufficient. In addition, while the literature indicates oral feedback is beneficial for patients and improves adherence, it is unknown whether written and/or oral feedback leads to better adherence to treatment recommendations in pwms. To our knowledge, there are no published studies identifying whether pwms complete recommendations made following neuropsychological testing, nor what factors prevent adherence. Thus, for pwms we sought to explore: 1) rates of adherence to such recommendations; 2) reasons for non-adherence; 3) the effect of oral (phone call) and written feedback over written feedback alone. We hypothesized that phone plus written feedback would be associated with higher adherence. 5

6 Participants Methods Patients included in this retrospective, cross-sectional study received neuropsychological testing as part of routine clinical care at the MS Center, Holy Name Medical Center in Teaneck, NJ, throughout (Range between testing and phone interview was 2-25 months; median 11 months). Number of months since testing was unrelated to recommendation adherence (t = -.037, P =.971) or spontaneous recall of recommendations (t = 1.224, P =.228). All patients were fluent English speakers. Eligibility criteria included having MS and having received recommendations following neuropsychological testing. Of the 66 patients seen during this period, 8 received no specific recommendations, 1 did not have MS, 1 had noninterpretable results and 1 was included in another study, making her ineligible; thus 55 were eligible and were contacted by phone. At least four attempts to contact a patient were made before excluding a patient from the study. A total of 45 patients were reached and included in this study. Patients were given 1-4 recommendations; the majority (N = 24; 53%) received three. Data collection took place January-March Procedures Albert Einstein College of Medicine provided institutional review board approval. Patients were contacted by the study coordinator and by doctoral students in the MS Psychology 6

7 Lab, and were asked standardized closed- and open-ended questions regarding adherence to recommendations from neuropsychological testing. Other information, including demographic variables and neuropsychological functioning, was obtained via retrospective chart review. Measures During the standardized interview, patients were asked if they recalled receiving a mailed report and a phone call from the psychologist regarding feedback from testing. These two variables were dichotomized between a Yes response and those responding No or who were unsure. Despite standard procedure to both mail a copy of the report and provide phone feedback to patients, some patients did not receive phone feedback if the psychologist was unable to reach them. Additionally, on one occasion, a spouse confirmed that a patient had received phone feedback but was unable to recall it (the patient s report, not the spouse s, was coded). Thus, these variables were coded as Recalled receiving paper copy of report in the mail and Recalled receiving phone feedback of results and recommendations. Next, patients were asked what recommendations they recalled. This variable was dichotomized between patients with no recall of any recommendations and those who had spontaneous recall of some or all recommendations. After the interviewer reminded the patient of any forgotten recommendations, the patient was asked which they had completed, why they had not completed the others, and if they planned to complete them. Reasons for non-adherence were sorted into five categories (post-hoc): 1. Wanting more information or to speak with their neurologist about the recommendation; 2. Difficulty navigating insurance or finding a provider; 3. Not thinking the recommendation was necessary; 4. Too busy/ lack of time; 5. Other. 7

8 Finally, patients were asked if they adhered to their disease-modifying therapy (DMT) or other medication they take regularly. The following options were given for this question: I take it as prescribed; I miss it once in a while; I miss it often; I never take it; I am not currently taking a DMT or medication regularly. Responses were dichotomized into Takes as prescribed or Misses it once in a while or more. The following measures were used to evaluate neuropsychological functioning, mood and fatigue at the time of testing: The Minimal Assessment of Cognitive Function in Multiple Sclerosis (MACFIMS) battery is a well-validated neuropsychological measure in pwms which takes approximately 90 minutes to administer. 20 A composite z-score was created to include 1-2 aspects of each domain from this battery (included scores: California Verbal Learning Test-II [CLVT-II] total immediate recall; CLVT-II delayed free recall; Brief Visuospatial Memory Test R [BVMT-R] total immediate recall; BVMT-R delayed recall; Delis-Kaplan Executive Function System Sorting Test, free sorting description score and sort recognition description score; Symbol Digit Modalities Test [SDMT]; Paced Auditory Serial Addition Test [PASAT] three-second trial; Verbal fluency tests: FAS and Animals; Judgment of Line Orientation). For participants who did not complete one or more MACFIMS tests, composite scores were calculated without those variables. The Patient Health Questionnaire (PHQ-9) 21 is a nine-item Likert-type scale measuring depression. Scoring 5,10,15 or 20 indicates mild, moderate, moderately-severe and severe depression, respectively. 8

9 The Fatigue Severity Scale (FSS) 22 is a nine-item self-report measure of fatigue severity wherein respondents rate their agreement with statements about their fatigue. A score exceeding 44 indicates clinically-significant fatigue. 23 Data Analysis Data were analyzed using statistical software (IBM SPSS Statistics for Macintosh, v23.0:ibm Corp, Armonk, NY). Skewness and kurtosis were examined and found acceptably normal for all variables used. Associations between a dichotomized adherence variable and patient descriptive variables (including demographics and patient characteristics) were calculated using independent t tests for continuous variables and Fisher s exact X 2 tests for dichotomous or nominal variables (due to the small cell size of several variables 24 ). Adherence descriptive statistics were also calculated. Results Forty-five patients with MS were included in this study (average age 43.4, SD = 12) (Table 1). Women made up 75.6% of the sample, consistent with the higher prevalence of women in the MS population. 25 The mean MACFIMS composite score was in the normal range (no significant differences between groups; P =.667). For the 42 patients reporting taking medication/dmts regularly, there was 76.2% adherence (taking medication as prescribed), while 23.8% reported they missed medication once in a while or often. Table 2 further describes patient characteristics and descriptive statistics. 9

10 Partial or complete adherence to neuropsychological test recommendations was associated with recalling having received both written and phone feedback rather than only written (P =.028). Partial or complete adherence was also associated with greater depression (P =.037), being separated, divorced or widowed (P =.037), and spontaneous recall of some or all recommendations (P =.012). No significant relationship was found between neuropsychological functioning and adherence to recommendations (P =.667). Overall, this sample of 45 MS patients received 115 recommendations, of which 44 were reportedly completed, yielding a 38.2% overall adherence rate. Five patients completed all recommendations (11.1% total adherence), 24 completed some (53.3% partial adherence) and 16 completed none (35.6%). Of the 40 patients with no or partial adherence, 20 reported they planned to complete them (50.0%) and 9 reported they might (22.5%). Adherence to recommendations that patients follow-up with a neurologist or psychiatrist regarding psychopharmacological management of psychiatric symptoms was 80%. Adherence to recommendations for fatigue and sleep management was 51.4%. A general recommendation for psychotherapy and/or psychiatry referral, without specifying the provider to be used, had adherence of 43.8%. Finally, recommendations for cognitive rehabilitation were followed 6.5% of the time. Reasons for non-adherence included wanting more information and/or to speak with one s neurologist regarding the recommendation (42.5%), difficulty navigating insurance or finding a provider (27.5%), deciding the recommendation was unnecessary (25.0%), and being too busy or not having time (12.5%). Other reasons for non-adherence were categorized as other (12.5%). 10

11 Discussion To our knowledge, this cross-sectional study is the first to evaluate adherence and reasons for non-adherence to recommendations and referrals made following neuropsychological testing among persons with multiple sclerosis (pwms). This study of 45 patients revealed that overall adherence was low. There was however significant variation in adherence rate depending on recommendation type. Recommendations for the patient to seek psychopharmacological management from their neurologist or psychiatrist had the highest adherence (notably, this was only measured among 10 patients). Other recommendations were followed less frequently. Referrals for fatigue and sleep management, or for general psychotherapy or psychiatry were followed about half the time. Patients reported the lowest adherence to cognitive rehabilitation referrals. Reasons for non-adherence were multi-faceted. Most commonly, patients wanted more information and/or to speak with their neurologist. While it is not standard practice for neurologists to review neuropsychological test reports with patients, this suggests such a practice may be beneficial. It would also be worth investigating in a future study whether follow-up by the patients neurologist who endorses the recommendations and facilitates adherence might reduce the disparity between rates of adherence to pharmacological and non-pharmacological recommendations. A large percentage of patients also reported difficulty with logistical aspects of completing a recommendation, such as navigating insurance, finding a provider, or finding the time. This suggests that pwms require more support than they are currently receiving. Closer monitoring by a clinical case manager/social worker might improve adherence by reminding patients about recommendations and helping them overcome these logistical problems. Finally, a 11

12 quarter of patients reported they found a recommendation unnecessary, suggesting that psychoeducation and greater discussion of recommendations with either the psychologist or neurologist is warranted. Notably, more than three-quarters of patients reported they planned to complete or would consider completing the given recommendations if barriers to completion were removed, suggesting there is significant room for interventions to improve adherence. With respect to our hypothesis, when patients recalled having received both a phone call and a mailed report, they were more likely to complete at least some recommendations as compared to patients who recalled only a mailed report. This supports our hypothesis, suggesting that providing oral feedback in-person or by phone, in addition to a written report, may be critical to improving adherence. Additionally, we found that spontaneous recall of at least some recommendations was associated with treatment adherence (although notably, rates of recall for recommendations was only 37.8%). This is in line with other research that one s ability to recall information is associated with better understanding of that information, often due to physicianpatient communication that allows the patient to ask questions and understand the importance of recommendations. 18,19 Thus, asking the patient to repeat back a recommendation or confirm understanding is likely beneficial. Our findings also revealed that adherence to at least some of the recommendations was associated with being separated, divorced or widowed as well as having higher depression. However, depressed patients were likely to receive more recommendations, and thus had more opportunity to complete one or more. Also, surprisingly, neither neuropsychological functioning nor employment status was related to treatment adherence in our sample, despite the considerable logistical and motivational barriers presented by both. 12

13 Limitations to this study include a small sample size, limiting multivariate analyses and correction for multiple comparisons. Further, this study did not randomize participants to receive a paper copy or a paper copy plus oral (phone) feedback, limiting causal interpretations. Instead, we relied on uncorroborated, retrospective patient self-reporting, which is susceptible to recall bias. Additionally, given that the psychologist attempted to contact all patients, there may be inherent differences between patients who did and did not return the psychologist s phone call. Finally, it is notable that patients in this study received free neuropsychological testing at Holy Name Medical Center. Adherence rates could differ for a population that pays (or has to access payer approval) for the service. Financial Disclosures: Dr. Seng has received funding from the National Institute of Neurological Diseases and Stroke (K23 NS096101) and served as a consultant for GlaxoSmithKline. The other authors declare no conflicts of interest. Funding/Support: This study was funded in part by the National Institutes of Health (K award to Dr. Seng). References 1. Julian LJ. Cognitive functioning in multiple sclerosis. Neurologic clinics. 2011;29:

14 2. Glanz BI, Healy BC, Rintell DJ, Jaffin SK, Bakshi R, Weiner HL. The association between cognitive impairment and quality of life in patients with early multiple sclerosis. Journal of the neurological sciences. 2010;290: Julian LJ, Vella L, Vollmer T, Hadjimichael O, Mohr DC. Employment in multiple sclerosis. Journal of neurology. 2008;255: Niino M, Mifune N, Kohriyama T, et al. Apathy/depression, but not subjective fatigue, is related with cognitive dysfunction in patients with multiple sclerosis. BMC neurology. 2014;14:3. 5. Lester K, Stepleman L, Hughes M. The association of illness severity, self-reported cognitive impairment, and perceived illness management with depression and anxiety in a multiple sclerosis clinic population. J Behav Med. 2007;30: Charvet L, Serafin D, Krupp LB. Fatigue in multiple sclerosis. Fatigue: Biomedicine, Health & Behavior. 2014;2: Koch MW, Patten S, Berzins S, et al. Depression in multiple sclerosis: a long-term longitudinal study. Multiple Sclerosis Journal. 2015;21: Moghadasi AN, Pourmand S, Sharifian M, Minagar A, Sahraian MA. Behavioral neurology of multiple sclerosis and autoimmune encephalopathies. Neurologic clinics. 2016;34: Treadaway K, Cutter G, Salter A, et al. Factors that influence adherence with diseasemodifying therapy in MS. Journal of neurology. 2009;256: Devonshire V, Lapierre Y, Macdonell R, et al. The Global Adherence Project (GAP): A multicenter observational study on adherence to disease modifying therapies in patients 14

15 with relapsing remitting multiple sclerosis. European Journal of Neurology. 2011;18: Turner A, Kivlahan D, Sloan A, Haselkorn J. Predicting ongoing adherence to disease modifying therapies in multiple sclerosis: utility of the health beliefs model. Multiple Sclerosis Journal. 2007;13: Aminzadeh F. Adherence to recommendations of community-based comprehensive geriatric assessment programmes. Age and Ageing. 2000;29: Alosco ML, Spitznagel MB, Van Dulmen M, et al. Cognitive function and treatment adherence in older adults with heart failure. Psychosomatic medicine. 2012;74: Meth M, Calamia M, Tranel D. Does a Simple Intervention Enhance Memory and Adherence for Neuropsychological Recommendations? Applied Neuropsychology: Adult. 2016;23: Alosco ML, Spitznagel MB, Cohen R, et al. Better adherence to treatment recommendations in heart failure predicts improved cognitive function at a one-year follow-up. Journal of clinical and experimental neuropsychology. 2014;36: Rosado DL. The Impact of Feedback Services of Neuropsychological Test Findings on Quality of Life and Social Adjustment, Rosalind Franklin University of Medicine and Science; Gorske TT. Therapeutic neuropsychological assessment: A humanistic model and case example. Journal of Humanistic Psychology. 2008;48: Beck RS, Daughtridge R, Sloane PD. Physician-patient communication in the primary care office: a systematic review. The Journal of the American Board of Family Practice. 2002;15:

16 19. Martin LR, Williams SL, Haskard KB, DiMatteo MR. The challenge of patient adherence. Ther Clin Risk Manag. 2005;1: Benedict RH, Cookfair D, Gavett R, et al. Validity of the minimal assessment of cognitive function in multiple sclerosis (MACFIMS). Journal of the International Neuropsychological Society. 2006;12: Kroenke K, Spitzer RL. The PHQ-9: a new depression diagnostic and severity measure. Psychiatric annals. 2002;32: Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. The fatigue severity scale: application to patients with multiple sclerosis and systemic lupus erythematosus. Archives of neurology. 1989;46: Lerdal A, Wahl AK, Rustoen T, Hanestad BR, Moum T. Fatigue in the general population: a translation and test of the psychometric properties of the Norwegian version of the fatigue severity scale. Scandinavian Journal of Social Medicine. 2005;33: Bower KM. When to use Fisher s exact test. Paper presented at: American Society for Quality, Six Sigma Forum Magazine Trojano M, Lucchese G, Graziano G, et al. Geographical variations in sex ratio trends over time in multiple sclerosis. PLOS one. 2012;7:e

17 Table 1. Patient descriptive statistics Total (N = 45) No adherence to neuropsychological recommendations (N = 16) Some or complete adherence to recommendations (N = 29) Variable Mean (SD)/ N (%) Mean (SD)/ N (%) Mean (SD)/ N (%) Age Education (years) Years Since MS diagnosis Months Between Date of Testing and Phone Interview Depression (PHQ) Fatigue (FSS) Neuropsychological functioning (MACFIMS composite z-score) Race White Other Gender Female Male Marital Status Married Single Separated/Divorced/Widowed 43.4 (12.0) 15.1 (2.1) 7.7 (7.1) 12.6 (7.4) 10.7 (6.8) 47.6 (14.9) -.69 (1.0) 29 (64.4%) 16 (35.6%) 34 (75.6%) 11 (24.4%) 29 (64.4%) 8 (17.8%) 8 (17.8%) 51.3 (15.8) 14.3 (2.5) 8.9 (5.5) 12.5 (7.6) 7.9 (6.5) 43.9 (14.0) -.59 (1.3) 11 (68.8%) 5 (31.3%) 10 (62.5%) 6 (37.5%) 12 (75.0%) 4 (25.0%) 0 (0.0%) irst (9.3) 15.5 (1.9) 7.0 (5.0) 12.6 (7.5) 12.3 (6.6) 49.7 (15.2) -.74 (0.8) 18 (62.1%) 11 (37.9%) 24 (82.8%) 5 (17.2%) 17 (58.6%) 4 (13.8%) 8 (27.6%) P value

18 Adherence to Medication Takes as prescribed Misses it once in a while or more Employment Status Employed/Student Unemployed/Retired Recommendations spontaneously recalled by patient None Some or All Recalled receiving phone feedback of results and recommendations Yes No/Unsure Recalled receiving paper copy of report in the mail Yes No/Unsure Recalled receiving both phone feedback and paper copy or only paper copy of report Mail and Phone Feedback Mail Only 32 (76.2%) 10 (23.8%) 19 (42.2%) 26 (57.8%) 28 (62.2%) 17 (37.8%) 24 (53.3%) 21 (46.7%) 36 (80.0%) 9 (20.0%) 20 (55.6%) 16 (44.4%) 11 (68.8%) 4 (25.0%) 9 (56.3%) 7 (43.8%) 14 (87.5%) 2 (12.5%) 6 (37.5%) 10 (62.5%) 11 (68.8%) 5 (31.3%) 3 (27.3%) 8 (72.7%) = N of 44, No Adherence group N of 16, Some or All Adherence group N of 28; =N of 42; =N of 36 irst 2 21 (77.8%) 6 (22.2%) 17 (58.6%) 12 (41.4%) 14 (48.3%) 15 (51.7%) 18 (62.1%) 11 (37.9%) 25 (86.2%) 4 (13.8%) 17 (68.0%) 8 (32.0%) Abbreviations: PHQ =Patient Health Questionnaire; FSS = Fatigue Severity Scale; SDMT= Symbol Digit Modalities Test Marital Status was analyzed as a dichotomous variable: separated/divorced/ widowed as compared to other groups

19 Table 2. Adherence Descriptive Statistics Variable N (%) Recommendations; Number Completed/ Total Given 1. Fatigue/sleep Management 2. Psychotherapy/Psychiatry 3. Cognitive Rehabilitation 4. Psychopharmacology 5. Other Adherence Level Completed all recommendations Partial adherence Completed no recommendations Reasons for non-adherence 1. Wants more information/ wants to speak with neurologist 2. Difficulty navigating insurance/ difficulty finding provider 3. Does not think it s necessary 4. Too busy/ no time to complete 5. Other Plan on future completion Yes No Maybe 40 people gave 48 reasons for non-adherence; = N of 40 irst 3 44/115 (38.2%) 18/35 (51.4%) 14/32 (43.8%) 2/31 (6.5%) 8/10 (80.0%) 2/7 (28.6%) 5 (11.1%) 24 (53.3%) 16 (35.6%) 17 (42.5%) 11 (27.5%) 10 (25.0%) 5 (12.5%) 5 (12.5%) 20 (50.0%) 11 (27.5%) 9 (22.5%)