Multiple Sclerosis and Parenting: How Our Children Respond to Diagnosis, Treatment, and Daily Life

Abstract Background Besides coping with a disease with many uncertainties, people with relapsing-remitting multiple sclerosis face complex decisions concerning disease-modifying therapies (DMTs). In an interview study, we aimed to assess patients’ experiences with DMTs. Methods Problem-centred interviews were conducted with 50 people with relapsing-remitting multiple sclerosis in Germany using maximum variation sampling and covering all licensed DMTs. Data were analysed thematically using deductive and inductive categories. Results 47 of 50 patients had treatment with at least one of the approved DMTs. The main themes were: (1) starting a DMT, (2) switching to another DMT, (3) discontinuing a DMT, and (4) multiple sclerosis without starting a DMT. Different intercorrelated factors influenced the decision-making processes for or against a DMT. Individual experiences with DMTs in daily life contained the effort in administration, success, and failure of DMTs, coping strategies and well-being without DMTs. The decision-making process for or against a DMT and the use of those treatments can be understood as a constant, continually shifting process, complicated by different factors, which change over time. Experiences with DMTs were characterized by attempts to handle uncertainty and to (re)gain control and integrate adaptivity into one’s life. Conclusions The study provides a rich and nuanced amount of patients’ experiences with DMTs. The findings demonstrate the importance for practitioners to look at current life circumstances of patients with multiple sclerosis when recommending a DMT and to promote and enable patients to make informed decisions.

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Laboratory versus daily life gait characteristics in patients with multiple sclerosis, Parkinson’s disease, and matched controls

Journal of NeuroEngineering and Rehabilitation ◽

10.1186/s12984-020-00781-4 ◽

2020 ◽

Vol 17 (1) ◽

Cited By ~ 1

Author(s):

Vrutangkumar V. Shah ◽

James McNames ◽

Martina Mancini ◽

Patricia Carlson-Kuhta ◽

Rebecca I. Spain ◽

...

Keyword(s):

Multiple Sclerosis ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Neurological Disease ◽

Inertial Sensors ◽

Daily Life ◽

Area Under The Curve ◽

Gait Characteristics ◽

Discrete Moment ◽

Healthy Control

Abstract Background and purpose Recent findings suggest that a gait assessment at a discrete moment in a clinic or laboratory setting may not reflect functional, everyday mobility. As a step towards better understanding gait during daily life in neurological populations, we compared gait measures that best discriminated people with multiple sclerosis (MS) and people with Parkinson’s Disease (PD) from their respective, age-matched, healthy control subjects (MS-Ctl, PD-Ctl) in laboratory tests versus a week of daily life monitoring. Methods We recruited 15 people with MS (age mean ± SD: 49 ± 10 years), 16 MS-Ctl (45 ± 11 years), 16 people with idiopathic PD (71 ± 5 years), and 15 PD-Ctl (69 ± 7 years). Subjects wore 3 inertial sensors (one each foot and lower back) in the laboratory followed by 7 days during daily life. Mann–Whitney U test and area under the curve (AUC) compared differences between PD and PD-Ctl, and between MS and MS-Ctl in the laboratory and in daily life. Results Participants wore sensors for 60–68 h in daily life. Measures that best discriminated gait characteristics in people with MS and PD from their respective control groups were different between the laboratory gait test and a week of daily life. Specifically, the toe-off angle best discriminated MS versus MS-Ctl in the laboratory (AUC [95% CI] = 0.80 [0.63–0.96]) whereas gait speed in daily life (AUC = 0.84 [0.69–1.00]). In contrast, the lumbar coronal range of motion best discriminated PD versus PD-Ctl in the laboratory (AUC = 0.78 [0.59–0.96]) whereas foot-strike angle in daily life (AUC = 0.84 [0.70–0.98]). AUCs were larger in daily life compared to the laboratory. Conclusions Larger AUC for daily life gait measures compared to the laboratory gait measures suggest that daily life monitoring may be more sensitive to impairments from neurological disease, but each neurological disease may require different gait outcome measures.

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Does gait bout definition influence the ability to discriminate gait quality between people with and without multiple sclerosis during daily life?

Gait & Posture ◽

10.1016/j.gaitpost.2020.11.024 ◽

2021 ◽

Vol 84 ◽

pp. 108-113

Author(s):

Vrutangkumar V. Shah ◽

James McNames ◽

Graham Harker ◽

Carolin Curtze ◽

Patricia Carlson-Kuhta ◽

...

Keyword(s):

Multiple Sclerosis ◽

Daily Life ◽

Gait Quality

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Observational Study on Daily Life Practice in 15039 Patient with Multiple Sclerosis in France

Value in Health ◽

10.1016/j.jval.2016.09.463 ◽

2016 ◽

Vol 19 (7) ◽

pp. A426-A427

Author(s):

G Defer ◽

J de Seze ◽

M Clanet ◽

S Bouee ◽

L Courouve ◽

...

Keyword(s):

Multiple Sclerosis ◽

Observational Study ◽

Daily Life

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Clinical impact of 20% worsening on Timed 25-foot Walk and 9-hole Peg Test in multiple sclerosis

Multiple Sclerosis Journal ◽

10.1177/1352458506070768 ◽

2006 ◽

Vol 12 (5) ◽

pp. 594-598 ◽

Cited By ~ 109

Author(s):

J J Kragt ◽

F AH van der Linden ◽

J M Nielsen ◽

B MJ Uitdehaag ◽

C H Polman

Keyword(s):

Multiple Sclerosis ◽

Daily Life ◽

Clinical Impact ◽

Time Interval ◽

Lower Extremity Function ◽

Perceived Disability ◽

Quantitative Measurements ◽

Disability Scale ◽

Life Functioning ◽

Clinical Meaning

Introduction: Quantitative tests of motor function, like the Timed 25-foot Walk (T25FW) and 9-hole Peg Test (9HPT), are increasingly being applied as outcome measures in multiple sclerosis (MS) clinical trials. The quantitative nature of the data has a favorable impact on responsiveness, but the clinical impact of the changes is uncertain. The goal of this study was to assess whether a change on T25FW and 9HPT does indeed have a clinical meaning. This was accomplished by comparing 20% changes on these quantitative measurements to concomitant changes on the Guy’s Neurological Disability Scale (GNDS), a scale which measures patient-perceived daily life disability. Methods: From a longitudinal database, we selected patients with at least two measurements of T25FW, 9HPT and GNDS with a minimal time interval of 350 days. In those patients who experienced at least a 20% change on T25FW or 9HPT, GNDS score changes were examined more closely. Results: Of 527 patients, 143 experienced a >20% worsening on their T25FW and 71 on their 9HPT, respectively. Patients with a 20% increase in T25FW or 9HPT had more GNDS worsening than patients without such an increase. GNDS worsening associated with an increase in T25FW was mainly due to an increase in perceived disability related to lower extremity function and fatigue; GNDS worsening associated with an increase in 9HPT was more diffuse with respect to domains involved. Conclusion: Worsening on T25FW or 9HPT has a clinical impact on disability, as perceived by MS patients during daily life functioning.

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‘I just want someone to rub some life into them!’: the lived experience of impaired sensation in the feet related to multiple sclerosis

British Journal of Neuroscience Nursing ◽

10.12968/bjnn.2021.17.sup1.s48 ◽

2021 ◽

Vol 17 (Sup1) ◽

pp. S48-S54

Author(s):

Claire Cook ◽

Pirjo Vuoskoski

Keyword(s):

Multiple Sclerosis ◽

Lived Experience ◽

Lived Experiences ◽

Daily Life ◽

The Self ◽

Phenomenological Method ◽

Body Sensation

Background: Impaired sensation in the feet is a commonly reported symptom experienced by people with multiple sclerosis. Aim: To explore the lived experiences of people living with multiple sclerosis-related impaired sensation in their feet. Method: Five open, unstructured interviews were analysed using a descriptive phenomenological method developed by Amedeo Giorgi. Findings: The essential structure of the research phenomenon consists of six key constituents: sense of heightened awareness of body sensation; sense of changed relationship to the feet; sense of changed participation in daily life; sense of the self with multiple sclerosis; sense of the meaning of interaction with others; and sense of being with impaired sensation. Conclusions: Findings imply that the experience of impaired sensation in the feet related to multiple sclerosis is a complex, lived-through phenomenon, interrelated to other aspects experienced with the condition. Clinicians are encouraged to consider implications of the phenomenon during encounters with people with multiple sclerosis, being well-placed to provide meaningful support.

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Role of Rehabilitation in Promoting Engagement in Daily Life in Multiple Sclerosis

International Journal of MS Care ◽

10.7224/1537-2073.2019-094 ◽

2020 ◽

Vol 22 (6) ◽

pp. 256-262

Author(s):

Niels Peeters ◽

Inger Grethe Løyning ◽

Sofie Ferdinand ◽

Daphne Kos

Keyword(s):

Multiple Sclerosis ◽

Cognitive Decline ◽

Daily Life ◽

Future Research ◽

Men And Women ◽

Multidisciplinary Rehabilitation ◽

Beneficial Effects ◽

Rehabilitation Programs ◽

Activity Performance

Abstract The purpose of this narrative review is to define the theoretical constructs of engagement, participation, and balance. The implementation of these constructs in multiple sclerosis (MS) rehabilitation are described because MS symptoms such as fatigue and cognitive decline may affect engagement in daily life. The constructs of engagement and participation can be considered to be different when they are studied. The constructs related to balance are of interest when targeting engagement. Multidisciplinary rehabilitation programs may have beneficial effects in optimizing engagement. Therefore, the measurement of these constructs is primordial because they give us a deeper understanding of the meaning of activity performance that reflects engagement in daily life. Future research may focus on describing engagement in both men and women at all stages of MS and may explore variables that influence engagement in daily life to integrate engagement optimization in MS rehabilitation. Engagement may have beneficial effects as part of multidisciplinary rehabilitation in MS.

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Tracking of a “Moving” Fused Auditory Image Under Conditions that Elicit the Precedence Effect

Journal of Speech Language and Hearing Research ◽

10.1044/jshr.3301.141 ◽

1990 ◽

Vol 33 (1) ◽

pp. 141-148 ◽

Cited By ~ 10

Author(s):

Christopher A. Moore ◽

Jerry L. Cranford ◽

Angela E. Rahn

Keyword(s):

Multiple Sclerosis ◽

Sound Localization ◽

Daily Life ◽

Normal Subjects ◽

Great Accuracy ◽

Precedence Effect ◽

Neural Function ◽

Auditory Image ◽

Conventional Tests ◽

Temporal Lobe Lesions

Pursuit auditory tracking of a fused auditory image (FAI), based on stimulus conditions known to elicit the precedence effect phenomenon in sound localization, was investigated in 36 normal subjects and in a small group of subjects with known neuropathology. Movement of the FAI was simulated by incrementally varying the delay between two clicks presented, one each, from two loudspeakers placed on opposite sides of the listener. The group of normal listeners tracked the movement of the FAI without difficulty and with great accuracy; the perceived location of the FAI varied linearly with the interspeaker delay. The sensitivity of the task in detecting neural timing or integration deficits was investigated in 5 subjects with neuropathology, including subjects with unilateral temporal lobe lesions, multiple sclerosis, or dyslexia. These disorders, previously shown to disrupt neural timing, yielded characteristic patterns of tracking inaccuracy for this task. These subjects had no difficulty localizing either a moving unitary click source or sounds in daily life. These data support the suggestion that sound localization using stimulus conditions known to elicit the precedence effect places greater demands on neural timing and integration than conventional tests of localization, and may provide a more sensitive index of neural function.

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