Feasibility and Acceptability of Self-Report and Biologically Measured Energy Intake in Adults With Multiple Sclerosis

Abstract The limitations of self-report measures of dietary intake are well known. Novel, technology-based measures of dietary intake may provide a more accurate, less burdensome alternative to existing tools. The first objective of this study was to compare participant burden for two technology-based measures of dietary intake among school-age children: the Automated-Self Administered 24-hour Dietary Assessment Tool-2018 (ASA24-2018) and the Remote Food Photography Method (RFPM). The second objective was to compare reported energy intake for each method to the Estimated Energy Requirement for each child, as a benchmark for actual intake. Forty parent-child dyads participated in 2, 3-day dietary assessments: a parent proxy-reported version of the ASA24 and the RFPM. A parent survey was subsequently administered to compare satisfaction, ease of use and burden with each method. A linear mixed model examined differences in total daily energy intake (TDEI) between assessments, and between each assessment method and the EER. Reported energy intake was 379 kcal higher with the ASA24 than the RFPM (p=0.0002). Reported energy intake with the ASA24 was 231 kcal higher than the EER (p = 0.008). Reported energy intake with the RFPM did not differ significantly from the EER (difference in predicted means = −148 kcal, p = 0.09). Median satisfaction and ease of use scores were 5 out of 6 for both methods. A higher proportion of parents reported that the ASA24 was more time consuming than the RFPM (74.4% vs. 25.6%, p = 0.002). Utilization of both methods is warranted given their high satisfaction among parents.

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Effect of Self - Care Program on the Self- Esteem of Multiple Sclerosis Patients

European Psychiatry ◽

10.1016/s0924-9338(09)71173-3 ◽

2009 ◽

Vol 24 (S1) ◽

pp. 1-1

Author(s):

H. Madani ◽

H. Navipoor ◽

P. Roozbayani

Keyword(s):

Multiple Sclerosis ◽

Self Care ◽

Care Program ◽

Self Esteem ◽

The Self ◽

Self Report ◽

The Mean ◽

Muscular Spasm ◽

Multiple Sclerosis Patients ◽

Paired T Test

Aims:According to decreased self- esteem in multiple sclerosis (MS) patients, it is necessary to utilize appropriate methods in order to improve self- esteem in MS patients. So this study was conducted on patients with MS supported by the Iranian MS society for determining the effect of self - care program on their self- esteem.Method:In this semi - experimental study 34 patients with MS who were not in the acute phase of disease were selected. The data were collected via personal questionnaires, problem list, Cooper and smith standard questionnaire for self- esteem and self report check lists. Self - care program(self - care for muscular spasm, fatigue, constipation and amnesia and …) was educated, then it was performed for one month period and the data were analyzed using paired t- test, wilcoxon, croscal - wallis and manwithney tests.Results:Application of self - care program improve the self- esteem and reduced some symptoms such as muscular spasm, fatigue, constipation and amnesia in MS patients. The mean valve of self- esteem increased from 54 before performing the program to 68 after the program ( p < 0.05).Conclusion:Using self-care program can be an effective method for improving self- esteem of MS patients.

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Quality of life in multiple sclerosis patients in Spain

Multiple Sclerosis Journal ◽

10.1191/1352458502ms851oa ◽

2002 ◽

Vol 8 (6) ◽

pp. 527-531 ◽

Cited By ~ 20

Author(s):

C-H Chang ◽

D Cella ◽

O Fernández ◽

G Luque ◽

P de Castro ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Well Being ◽

Cross Sectional Study ◽

Self Report ◽

Regression Analyses ◽

Cross Sectional ◽

Scale Scores ◽

Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

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Validation of the NARCOMS Registry: pain assessment

Multiple Sclerosis Journal ◽

10.1191/1352458505ms1167oa ◽

2005 ◽

Vol 11 (3) ◽

pp. 338-342 ◽

Cited By ~ 28

Author(s):

Ruth Ann Marrie ◽

Gary Cutter ◽

Tuula Tyry ◽

Olympia Hadjimichael ◽

Timothy Vollmer

Keyword(s):

Multiple Sclerosis ◽

Convergent Validity ◽

Disease Duration ◽

Self Report ◽

Research Committee ◽

Retest Reliability ◽

The North ◽

Disability Status ◽

Pain Question ◽

Test Retest Reliability

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a multiple sclerosis (MS) self-report registry with more than 24 000 participants. Participants report disability status upon enrolment, and semi-annually using Performance Scales (PS), Patient Determined Disease Steps (PDDS) and a pain question. In November 2000 and 2001, we also collected the Pain Effects Scale (PES). Our aim was to validate the NARCOMS pain question using the PES as our criterion measure. We measured correlations between the pain question and age, disease duration, various PS subscales and PDDS to assess construct validity. We correlated pain question responses in participants who reported no change in PDSS or the PS subscales between questionnaires to determine test—retest reliability. We measured responsiveness in participants who reported a substantial change in the sensory, spasticity PS subscales. The correlation between the pain question and PES was r=0.61 in November 2000, and r=0.64 in November 2001 (both P<0.0001). Correlations between the pain question and age, and disease duration were low, indicating divergent validity. Correlations between the pain question and spasticity, sensory PS subscales and PDSS were moderate, indicating convergent validity. Test—retest reliability was r=0.84 (P<0.0001). Responsiveness was 70.7%. The pain question is a valid self-report measure of pain in MS.

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Lower self-report fatigue in multiple sclerosis is associated with localized white matter tract disruption between amygdala, temporal pole, insula, and other connected structures

Multiple Sclerosis and Related Disorders ◽

10.1016/j.msard.2018.11.005 ◽

2019 ◽

Vol 27 ◽

pp. 298-304 ◽

Cited By ~ 5

Author(s):

Tom A. Fuchs ◽

Caila B. Vaughn ◽

Ralph H.B. Benedict ◽

Bianca Weinstock-Guttman ◽

Sanjeevani Choudhery ◽

...

Keyword(s):

Multiple Sclerosis ◽

White Matter ◽

Self Report ◽

White Matter Tract ◽

Temporal Pole

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Transcutaneous tibial nerve stimulation for the treatment of bladder storage symptoms in people with multiple sclerosis: Protocol of a single-arm feasibility study

HRB Open Research ◽

10.12688/hrbopenres.13107.1 ◽

2020 ◽

Vol 3 ◽

pp. 66

Author(s):

Hawra B. Al Dandan ◽

Rose Galvin ◽

Katie Robinson ◽

Dorren McClurg ◽

Susan Coote

Keyword(s):

Multiple Sclerosis ◽

Nerve Stimulation ◽

Tibial Nerve ◽

Randomised Trial ◽

Self Report ◽

Urinary Symptoms ◽

Lower Urinary Tract Dysfunction ◽

Convenience Sample ◽

Tibial Nerve Stimulation ◽

Qualitative Interview Study

Background: Neurogenic lower urinary tract dysfunction (NLUTD) is common among people with multiple sclerosis (MS) with a pooled prevalence of 68.41% using self-report measures and 63.95% using urodynamic studies. Transcutaneous tibial nerve stimulation (TTNS) is a non-invasive option to manage bladder storage symptoms; however, the potential efficacy of TTNS among people with MS is based on a small number of studies with the absence of high-quality evidence relating to efficacy, and lack of clarity of the optimal electrical stimulation parameters and frequency, duration and number of treatment sessions. This study aims to assess whether TTNS is feasible and acceptable as a treatment for bladder storage symptoms in people with MS. Methods: We will use a single-arm experimental study to explore the feasibility and acceptability of TTNS in the treatment of bladder storage symptoms in MS. The CONSORT extension for pilot and feasibility studies will be followed to standardise the conduct and reporting of the study. The recruitment plan is twofold: 1) Open recruitment for people with MS through MS Ireland’s communication channels; 2) recruitment from a convenience sample of people with MS who have previously participated in a qualitative interview study of urinary symptoms. We will assess recruitment/retention rates, the urinary symptoms changes and the effect on quality of life pre and post intervention using ICIQ-OAB, 3-day bladder diary, King’s Health Questionnaire and collect self-reported data on adherence and adverse events. Acceptability of using TTNS will be evaluated at the end of intervention. This study has been reviewed and approved by the Education and Health Science’s Faculty Research Ethics Committee, University of Limerick [2020_06_07_EHS]. Conclusion: It is anticipated that assessing the feasibility and acceptability of TTNS for storage bladder symptoms in MS will inform the development of a definitive randomised trial. Trial registration: ClinicalTrials.gov NCT04528784 27/08/2020

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Effect of COVID-19 Lockdown on Patients with Multiple Sclerosis: an Italian Survey

10.47363/jnrrr/2021(3)138 ◽

2021 ◽

pp. 1-7

Author(s):

Marta Altieri ◽

◽

Mariangela Fratino ◽

Flavia Pauri ◽

Antonella Conte ◽

...

Keyword(s):

Multiple Sclerosis ◽

Family Caregiving ◽

Social Life ◽

Negative Impact ◽

Self Report ◽

Psychological Status ◽

Control Group ◽

Clinical Effects ◽

Future Expectations ◽

The Impact

Background: Italy was one of the first affected countries by coronavirus disease 2019 (COVID-19) pandemic. Public health measures like quarantine or national lockdown were adopted, with negative psychological and clinical effects on patients with chronic diseases. To investigate the impact of lockdown on patients with multiple sclerosis (MS), we developed a 36 items self-report questionnaire. Methods: Questionnaires were emailed to 120 patients with MS and 100 with chronic migraine (CM) as a control group, matched for age, sex, and education. The questionnaire was divided into five domains, evaluating concerns about 1) MS and therapy during COVID-19 pandemic, 2) personal and family caregiving, 3) working activities, 4) general and disease-related emotions during the lockdown, 5) future expectations concerning health status, social life, and working activity. Results: patients with MS had higher scores than those with CM in domains 4 and 5, investigating respectively general and disease-related emotions and future expectations (p= 0.05 and 0.02 respectively). About half of the patients with MS expressed some concern about the need to continue their therapy during the pandemic compared to people with CM (p= 0.0002). Conclusions: Covid-19 pandemic had a more negative impact on psychological status of patients with MS compared with those with CM

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Strategies to Address Misestimation of Energy Intake Based on Self-Report Dietary Consumption in Examining Associations Between Dietary Patterns and Cancer Risk

Nutrients ◽

10.3390/nu11112614 ◽

2019 ◽

Vol 11 (11) ◽

pp. 2614

Author(s):

Solbak ◽

Al Rajabi ◽

Akawung ◽

Lo Siou ◽

Kirkpatrick ◽

...

Keyword(s):

Cluster Analysis ◽

Cancer Risk ◽

Energy Intake ◽

Dietary Patterns ◽

Nearest Neighbor ◽

Self Report ◽

Cox Proportional Hazard ◽

Disease Associations ◽

Cox Proportional Hazard Regression ◽

Risk Of Cancer

The objective of this study was to determine the influence of strategies of handling misestimation of energy intake (EI) on observed associations between dietary patterns and cancer risk. Data from Alberta’s Tomorrow Project participants (n = 9,847 men and 16,241 women) were linked to the Alberta Cancer Registry. The revised-Goldberg method was used to characterize EI misestimation. Four strategies assessed the influence of EI misestimation: Retaining individuals with EI misestimation in the cluster analysis (Inclusion), excluding before (ExBefore) or after cluster analysis (ExAfter), or reassigning into ExBefore clusters using the nearest neighbor method (InclusionNN). Misestimation of EI affected approximately 50% of participants. Cluster analysis identified three patterns: Healthy, Meats/Pizza and Sweets/Dairy. Cox proportional hazard regression models assessed associations between the risk of cancer and dietary patterns. Among men, no significant associations (based on an often-used threshold of p < 0.05) between dietary patterns and cancer risk were observed. In women, significant associations were observed between the Sweets/Dairy and Meats/Pizza patterns and all cancer risk in the ExBefore (HR (95% CI): 1.28 (1.04–1.58)) and InclusionNN (HR (95% CI): 1.14 (1.00–1.30)), respectively. Thus, strategies to address misestimation of EI can influence associations between dietary patterns and disease outcomes. Identifying optimal approaches for addressing EI misestimation, for example, by leveraging biomarker-based studies could improve our ability to characterize diet-disease associations.

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Memantine for cognitive impairment in multiple sclerosis: a randomized placebo-controlled trial

Multiple Sclerosis Journal ◽

10.1177/1352458510367662 ◽

2010 ◽

Vol 16 (6) ◽

pp. 715-723 ◽

Cited By ~ 57

Author(s):

JF Lovera ◽

E. Frohman ◽

TR Brown ◽

D. Bandari ◽

L. Nguyen ◽

...

Keyword(s):

Multiple Sclerosis ◽

Cognitive Impairment ◽

Free Recall ◽

Controlled Trial ◽

Neuropsychiatric Symptoms ◽

Verbal Learning ◽

Self Report ◽

California Verbal Learning Test ◽

Cognitive Improvement ◽

Learning Test

Background: Memantine, an NMDA antagonist, is effective for moderate to severe Alzheimer’s disease. Objective: Determine whether memantine improves cognitive performance (CP) among subjects with multiple sclerosis (MS) and cognitive impairment (CI). Methods: This double-blind, randomized, placebo-controlled trial (Clinicaltrials.gov NCT00300716) compared memantine 10 mg twice a day (4 week titration followed by 12 weeks on the highest tolerated dose) with placebo. The primary outcome was the change from baseline to exit on the Paced Auditory Serial Addition Test (PASAT) and the California Verbal Learning Test-II (CVLT-II) Long Delay Free Recall (LDFR). Secondary outcomes included additional neuropsychological tests; self-report measures of quality of life, fatigue, and depression; and family/caregiver reports of subjects’ CI and neuropsychiatric symptoms. Results: The differences between the groups on the change on the PASAT (placebo—memantine = 0.0 correct responses, 95% CI 3.4, 3.4; p = 0.9) and on CVLT-II LDFR (placebo—memantine =—0.6 words, 95% CI —2.1, 0.8; p = 0.4) as well as on the other cognitive tests were not significant. Subjects on memantine had no serious adverse events (AEs) but had more fatigue and neurological AEs as well as, per family members’ reports, less cognitive improvement and greater neuropsychiatric symptoms than subjects on placebo. Conclusion: Memantine 10 mg twice a day does not improve CP in subjects with MS, ages 18—65, without major depression, who have subjective cognitive complaints and perform worse than one SD below the mean on the PASAT or on the California Verbal Learning Test-II (total recall or delayed free recall).

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Pilot Trial of a Social Cognitive Theory-Based Physical Activity Intervention Delivered by Nonsupervised Technology in Persons With Multiple Sclerosis

Journal of Physical Activity and Health ◽

10.1123/jpah.2014-0018 ◽

2015 ◽

Vol 12 (7) ◽

pp. 924-930 ◽

Cited By ~ 17

Author(s):

Yoojin Suh ◽

Robert W. Motl ◽

Connor Olsen ◽

Ina Joshi

Keyword(s):

Physical Activity ◽

Multiple Sclerosis ◽

Social Cognitive Theory ◽

Behavioral Intervention ◽

Social Cognitive ◽

Cognitive Theory ◽

Pilot Trial ◽

Intervention Group ◽

Self Report ◽

Phone Calls

Background:Physical inactivity is prevalent in people with multiple sclerosis (MS) and this highlights the importance of developing behavioral interventions for increasing physical activity (PA) in MS. This pilot trial examined the efficacy of a 6-week, behavioral intervention based on social cognitive theory (SCT) delivered by newsletters and phone calls for increasing PA in persons with MS who were physically inactive and had middle levels of self-efficacy.Methods:The sample included 68 persons with relapsing-remitting MS who were randomly assigned into intervention and control groups. The intervention group received SCT-based information by newsletters and phone calls, whereas the controls received information regarding topics such as stress management over 6 weeks. Participants completed self-report of PA and social cognitive variables.Results:The intervention group had a significant increase in self-reported PA (d = 0.56, P = .02) over the 6 weeks, but the controls had a nonsignificant change (d = –0.13, P = .45). Goal setting was changed in the intervention group (d = 0.68, P ≤ .01) and identified as a significant mediator of change in self-reported PA.Conclusions:This study provides initial evidence for the benefit of a theory-based behavioral intervention for increasing PA in MS.

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