Marco Heerings

The interactive web-based program MSmonitor for self-management and multidisciplinary care in multiple sclerosis: utilization and valuation by patients

Background MSmonitor is an interactive web-based program for self-management and integrated, multidisciplinary care in multiple sclerosis. Methods To assess the utilization and valuation by persons with multiple sclerosis, we held an online survey among those who had used the program for at least 1 year. We evaluated the utilization and meaningfulness of the program’s elements, perceived use of data by neurologists and nurses, and appreciation of care, self-management, and satisfaction. Results Fifty-five persons completed the questionnaire (estimated response rate 40%). The Multiple Sclerosis Impact Profile (MSIP), Medication and Adherence Inventory, Activities Diary, and electronic consultation (e-consult) were used by 40%, 55%, 47%, and 44% of respondents and were considered meaningful by 83%, 81%, 54%, and 88%, respectively. During out-patient consultations, nurses reportedly used the MSmonitor data three to six times more frequently than neurologists. As to nursing care, more symptoms were dealt with (according to 54% of respondents), symptoms were better discussed (69%), and the overall quality of care had improved (60%) since the use of the program. As to neurological care, these figures were 24%, 31%, and 27%, respectively. In 46% of the respondents, the insight into their symptoms and disabilities had increased since the use of the program; the MSIP, Activities Diary, and e-consult had contributed most to this improvement. The overall satisfaction with the program was 3.5 out of 5, and 73% of the respondents would recommend the program to other persons with multiple sclerosis. Conclusion A survey among persons with multiple sclerosis using the MSmonitor program showed that the MSIP, Medication and Adherence Inventory, Activities Diary, and e-consult were frequently used and that the MSIP, Medication and Adherence Inventory, and e-consult were appreciated the most. Moreover, the quality of nursing care, but not so neurological care, had improved, which may relate to nurses making more frequent use of the MSmonitor data than neurologists.

An intensive social cognitive program (can do treatment) in people with relapsing remitting multiple sclerosis and low disability: a randomized controlled trial protocol

BackgroundIn people with multiple sclerosis (MS) disabilities and limitations may negatively affect self-efficacy. Lowered self-efficacy has been associated with decreases in health-related quality of life, physical activity and cognitive performance. In an explorative observational study we found that a 3-day intensive social cognitive program (Can Do Treatment [CDT]) with the participation of support partners was followed by substantial increases in self-efficacy control and health-related quality of life 6 months after treatment in those people with MS who had relapsing remitting disease and low disability.Methods/DesignCDT is a sociologically oriented approach, its goal is to uncover and promote existing capabilities, and the notion “stressor” is the central concept. CDT’s components are plenary group sessions, small group sessions, consultations, a theatre evening, and start of the day with a joint activity. The small group sessions form the actual training. Depending on their individual goals the participants join the training groups ‘Body’, ‘Feeling’ or ‘Life’, to work out their aims and to reduce their stressors. The multidisciplinary team includes a psychiatrist, psychiatric nurse, neurologist, specialized MS nurse, physiotherapist, dance therapist, and a person with MS. To evaluate the (cost)effectiveness of CDT in persons with relapsing remitting MS and low disability we perform a single-centre, randomized controlled trial in 140 patients, with or without support partners. The primary outcome is self-efficacy control. The secondary outcomes are self-efficacy function, health-related quality of life, autonomy and participation, anxiety, depression, cost effectiveness and cost utility. The tertiary outcome is care-related strain to support partners. Outcomes are assessed at baseline and at 1, 3 and 6 months after CDT.DiscussionThis randomized controlled trial will adequately evaluate the clinical and cost effectiveness of a 3-day intensive social cognitive program in people with relapsing remitting MS and low disability, with self-efficacy control as primary outcome.Dutch trial registryApplication number: 22444

Perspectives and experiences of Dutch multiple sclerosis patients and multiple sclerosis-specialized neurologists on injectable disease-modifying treatment

Background The adherence to treatment with injectable disease-modifying drugs (DMDs) in multiple sclerosis (MS) may benefit from adequate information provision and management of expectations. The communication between patients and physicians is very important in this respect. The current study investigated the perspectives and experiences of the MS patients and neurologists concerning the choice and course of treatment with DMDs in the Netherlands. Methods The MS patients (aged 18–60 years; diagnosed with MS at least a year ago, currently treated with injectable DMD treatment) and MS-specialized neurologists (practicing for ≥3 years, treating ≥15 MS patients/month on average, and spending >60% of their time in clinical practice) were asked to complete semistructured Internet-based questionnaires. The neurologists in this study were not necessarily the treating neurologists of the participating MS patients. Results In all, 107 MS patients and 18 MS-specialized neurologists completed the questionnaires. The MS-specialized neurologists in this study reported discussing most of the suggested treatment goals with their patients. The MS patients indicated that certain important treatment goals, ie, reduction in disease progression, reduction or prolongation of time to long-term disability, and reduction in new magnetic resonance imaging lesions, were not discussed with them. More than one-quarter of the patients (27%) would appreciate more information about their treatment. We found evidence for suboptimal patient adherence to MS therapy (23% indicated taking a treatment break) due to diverse side effects, lack of efficacy, or practical issues. As compared to these patient reports, the scale of poor adherence was overestimated by more than half of the neurologists (on average, 30% estimated treatment breaks). Conclusion The MS patients and MS-specialized neurologists in this study differ in their experiences and perspectives on information provision and adherence to DMDs. Education programs and up-to-date information on MS treatments for both neurologists and patients may be helpful in improving patient involvement and patient–physician communication.

The capability set for work - correlates of sustainable employability in workers with multiple sclerosis

BackgroundThe aim of this study was to examine whether work capabilities differ between workers with Multiple Sclerosis (MS) and workers from the general population. The second aim was to investigate whether the capability set was related to work and health outcomes.MethodsA total of 163 workers with MS from the MS@Work study and 163 workers from the general population were matched for gender, age, educational level and working hours. All participants completed online questionnaires on demographics, health and work functioning. The Capability Set for Work Questionnaire was used to explore whether a set of seven work values is considered valuable (A), is enabled in the work context (B), and can be achieved by the individual (C). When all three criteria are met a work value can be considered part of the individual’s ‘capability set’.ResultsGroup differences and relationships with work and health outcomes were examined. Despite lower physical work functioning (U = 4250, p = 0.001), lower work ability (U = 10591, p = 0.006) and worse self-reported health (U = 9091, p ≤ 0.001) workers with MS had a larger capability set (U = 9649, p ≤ 0.001) than the general population. In workers with MS, a larger capability set was associated with better flexible work functioning (r = 0.30), work ability (r = 0.25), self-rated health (r = 0.25); and with less absenteeism (r = − 0.26), presenteeism (r = − 0.31), cognitive/neuropsychiatric impairment (r = − 0.35), depression (r = − 0.43), anxiety (r = − 0.31) and fatigue (r = − 0.34).ConclusionsWorkers with MS have a larger capability set than workers from the general population. In workers with MS a larger capability set was associated with better work and health outcomes.Trial registrationThis observational study is registered under NL43098.008.12: ‘Voorspellers van arbeidsparticipatie bij mensen met relapsing-remitting Multiple Sclerose’. The study is registered at the Dutch CCMO register (https://www.toetsingonline.nl). This study is approved by the METC Brabant, 12 February 2014. First participants are enrolled 1st of March 2014.

Coping strategies in relation to negative work events and accommodations in employed multiple sclerosis patients

Background Job loss is common in multiple sclerosis (MS) and is known to exert a negative effect on quality of life. The process leading up to job loss typically includes negative work events, productivity losses and a need for accommodations. By using active coping strategies job loss may be prevented or delayed. Objective Our goal was to examine negative work events and accommodations in relation to coping strategies in employed relapsing–remitting MS patients. Methods Ninety-seven MS patients (77% females; 21–59 years old) completed questionnaires concerning the patient’s work situation, coping strategies, demographics, physical, psychological and cognitive functioning. Forward binary logistic regression analyses were conducted to examine coping strategies and other (disease) characteristics predictive of reported negative work events and accommodations. Results Nineteen per cent of the employed MS patients reported one or more negative work events, associated with a higher use of emotion-oriented coping and more absenteeism. Seventy-three per cent reported using one or more work accommodations, associated with a higher educational level and more presenteeism. MS patients reporting physical changes to the workplace employed more emotion-oriented coping, while flexible scheduling was associated with task-oriented coping. Conclusion Emotion-oriented and task-oriented coping strategies are associated with negative work events and the use of accommodations.

Validation of a Dutch version of the Actionable 8-item screening questionnaire for neurogenic bladder overactivity in multiple sclerosis: an observational web-based study

BackgroundIn patients with multiple sclerosis (MS) the impact of urological symptoms on quality of life and daily activities is considerable. Yet, a substantial percentage of patients may not be urologically evaluated and thus fail to be treated concordantly. The 8-item Actionable questionnaire is a validated English screening tool for the detection of neurogenic bladder overactivity in MS. To enable the use of the 8-item Actionable in The Netherlands and Belgium we translated the questionnaire into the Dutch language and investigated the test-retest reliability and the concurrent validity of the Dutch version.MethodsThe process of translating the English Actionable questionnaire into the Dutch language included forward translations and back-translations. Then, in an online observational study, MS patients completed the Dutch Actionable at Days 1 and 8, and the Multiple Sclerosis Quality of Life 54-Items (MSQoL-54) and Multiple Sclerosis Impact Profile (MSIP) questionnaires at Day 1; the Expanded Disability Status Scale (EDSS) score was assessed by phone at Day 1. For assessment of the test-retest reliability Pearson’s correlation coefficient (r) between the Day 1 and Day 8 Actionable scores was calculated. For assessment of the concurrent validity r values were calculated between the Day 1 Actionable score and the EDSS score, the Physical and Mental MSQoL-54 composites, and the MSIP domain and symptom disability scores.ResultsStudy population: N = 141 (106 female, 35 male) (80 relapsing remitting, 48 progressive, 13 unknown), mean age 47.8 (standard deviation [SD] 10.4) years, mean EDSS score 4.7 (SD 1.8); 137 patients completed the Day 8 assessment. Pearson’s r between Actionable scores Day 1 and Day 8: 0.85 (P < .0001). Pearson’s r between Actionable score Day 1 and scores for EDSS 0.41 (P < 0.0001), MSQoL-54 Physical −0.31 (P = 0.0002), MSQoL-54 Mental −0.29 (P = 0.0005), MSIP Excretion and Reproductive Functions 0.44 (P < 0.0001), Muscle and Movement Functions 0.39 (P < .0001), Basic Movement Activities 0.37 (P < 0.0001), Activities of Daily Living 0.32 (P < 0.0001), Participation in Life Situations 0.29 (P = 0.0006) and Mental Functions 0.20 (P = 0.0189).ConclusionsThe Dutch version of the Actionable urological screening tool for MS shows a good test-retest reliability and a good concurrent validity with disabilities and HRQoL.