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1.
Disabil Health J ; 17(2): 101549, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38001005

RESUMO

BACKGROUND: Fatigue negatively impacts the function and quality of life of people with disabilities (PwD). Mobile health (mHealth) platforms are recognized as effective and accessible approaches to delivering health interventions and may show higher satisfaction by tailoring the information toward personalized needs for PwD. OBJECTIVE: To evaluate the acceptability, feasibility, and participant engagement with a Short Message Service (SMS) text messaging intervention for fatigue self-management and to explore the pre- and post-score health changes in PwD. METHODS: A total of 27 PwD (multiple sclerosis = 9, spinal cord injury = 9, or stroke = 9) experiencing fatigue in their daily lives participated in a 12-week self-management text messaging intervention. Participants completed a demographic survey and health outcome measures, including patient activation, self-efficacy for managing symptoms, fatigue, sleep, and satisfaction with participation in social roles before and after the intervention. Participants also completed a client satisfaction questionnaire after the intervention. We also tracked the program retention and SMS response rates over the 12-week intervention period. RESULTS: Twenty-five participants completed the entire intervention (93% retention rate), and the overall SMS response rate was 84.67%, indicating high acceptability and adherence to the intervention. The mean satisfaction score was 3.18, indicating high satisfaction with the intervention. Despite finding a negligible effect on patient activation, we found a small intervention effect on self-efficacy for managing symptoms (η2 = 0.04) and moderate effects on fatigue (η2 = 0.06-0.12), sleep (η2 = 0.11), and satisfaction with participation in social roles (η2 = 0.08). CONCLUSIONS: This study provides initial feasibility and health outcome change evidence to support an SMS text messaging intervention to manage fatigue in PwD.


Assuntos
Pessoas com Deficiência , Esclerose Múltipla , Autogestão , Traumatismos da Medula Espinal , Acidente Vascular Cerebral , Envio de Mensagens de Texto , Humanos , Projetos Piloto , Qualidade de Vida , Esclerose Múltipla/complicações , Traumatismos da Medula Espinal/complicações
2.
Biol Res Nurs ; 26(1): 101-114, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37558634

RESUMO

Objective: The purpose of this literature review article is to provide a synthesis of recent research focused on the use of 3 techniques to evaluate MS-related fatigue: electroencephalography [EEG], transcranial direct-current stimulation (tDSC), and transcranial- magnetic stimulation (TMS). Method: We performed a literature search in the Cumulative Index to Nursing and Allied Health Literature (CINAHL, EBSCOhost), MEDLINE (OVID), APA PsycInfo (OVID), Scopus (Elsevier), and Web of Science (Clarivate) databases, limited to 2015 and after. Results: Our review revealed that fatigue in MS patients can be quantified and predicted using electrophysiological techniques. Such techniques, which yield objective data, are historically assessed in relation to subjective data, or perceived fatigue. We identified studies using EEG, TMS, and/or tDCS to study fatigue in people with MS. In total, 220 records were identified with 19 studies meeting inclusion criteria. Quality appraisal revealed that the level of evidence was generally graded "good". Conclusions: Despite the heterogenous nature of reviewed the studies and selected the varied self-report fatigue measures, our literature synthesis suggests promise for the use of EEG, TMS, and/or tDCS approaches in more accurately assessing fatigue in people with MS. Further research is needed in this arena.


Assuntos
Esclerose Múltipla , Estimulação Transcraniana por Corrente Contínua , Humanos , Estimulação Transcraniana por Corrente Contínua/métodos , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Estimulação Magnética Transcraniana/métodos , Fadiga/etiologia , Fadiga/terapia , Encéfalo/fisiologia
4.
JMIR Form Res ; 6(12): e40166, 2022 Dec 21.
Artigo em Inglês | MEDLINE | ID: mdl-36542466

RESUMO

BACKGROUND: Fatigue significantly affects daily functioning in persons with disabilities. Fatigue management can be challenging, and the information provided during routine physician visits to manage fatigue can be overwhelming. One way to address fatigue is to increase knowledge, skills, and confidence for self-management (ie, patient activation). Self-management programs have shown promising effects in targeting fatigue in persons with disabilities. However, satisfaction with self-management programs is low for persons with disabilities, and tailoring interventions to personalized needs has been recommended. SMS text messaging is increasingly being used to implement health behavior change interventions in a person's natural environment. Little has been done to link mobile health approaches with patient activation and self-management to address fatigue in persons with disabilities. OBJECTIVE: This study aimed to develop and test a mobile phone-based fatigue self-management SMS text messaging intervention targeting patient activation in 3 groups of persons with disabilities: persons with multiple sclerosis, persons who had a stroke, and persons with a spinal cord injury. METHODS: We used evidence-based resources and input from a consumer advisory board (CAB; composed of 2 participants from each of the 3 disability groups) and a neurologist to develop the intervention. The study was conducted using a 4-step process: development of the initial SMS text messaging library and categorization of the content into 9 content areas, review and modification of the SMS text messages by the neurologist and CAB, integration of the content library into a digital platform, and utility testing by CAB members. RESULTS: A total of 6 CAB participants rated SMS text messages covering 9 domain areas of fatigue self-management with good clarity (mean ratings=3.5-5.0 out of 5) and relevance (mean ratings=3.2-5.0 out of 5). Overall, SMS text messaging content was reported by CAB participants as helpful, clear, and well suited for a mobile health intervention. The CAB reached consensus on the time of day that SMS text messages should be sent (morning) and their frequency (once per day). This feedback led the research team to narrow down the program to deliver 48 SMS text messages, 1 per day, Monday through Thursday only, a total of 4 SMS text messages per week, over a 12-week period. The final set of SMS text messages was programmed into a digital platform with a predefined delivery schedule. The usability of the intervention was high, with 55 (83%) out of 66 responses endorsing the highest rating. CONCLUSIONS: This study demonstrates a step-by-step process for developing a fatigue self-management SMS text messaging intervention for persons with disabilities. For this population, whose access to health services is often limited, this intervention provides an alternative delivery model to increase access to fatigue information and deliver content that aligns with the person's needs.

5.
EBioMedicine ; 76: 103798, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-35094961

RESUMO

BACKGROUND: Multiple sclerosis (MS) has a complex genetic, immune and metabolic pathophysiology. Recent studies implicated the gut microbiome in MS pathogenesis. However, interactions between the microbiome and host immune system, metabolism and diet have not been studied over time in this disorder. METHODS: We performed a six-month longitudinal multi-omics study of 49 participants (24 untreated relapse remitting MS patients and 25 age, sex, race matched healthy control individuals. Gut microbiome composition and function were characterized using 16S and metagenomic shotgun sequencing. Flow cytometry was used to characterize blood immune cell populations and cytokine profiles. Circulating metabolites were profiled by untargeted UPLC-MS. A four-day food diary was recorded to capture the habitual dietary pattern of study participants. FINDINGS: Together with changes in blood immune cells, metagenomic analysis identified a number of gut microbiota decreased in MS patients compared to healthy controls, and microbiota positively or negatively correlated with degree of disability in MS patients. MS patients demonstrated perturbations of their blood metabolome, such as linoleate metabolic pathway, fatty acid biosynthesis, chalcone, dihydrochalcone, 4-nitrocatechol and methionine. Global correlations between multi-omics demonstrated a disrupted immune-microbiome relationship and a positive blood metabolome-microbiome correlation in MS. Specific feature association analysis identified a potential correlation network linking meat servings with decreased gut microbe B. thetaiotaomicron, increased Th17 cell and greater abundance of meat-associated blood metabolites. The microbiome and metabolome profiles remained stable over six months in MS and control individuals. INTERPRETATION: Our study identified multi-system alterations in gut microbiota, immune and blood metabolome of MS patients at global and individual feature level. Multi-OMICS data integration deciphered a potential important biological network that links meat intakes with increased meat-associated blood metabolite, decreased polysaccharides digesting bacteria, and increased circulating proinflammatory marker. FUNDING: This work was supported by the Washington University in St. Louis Institute of Clinical and Translational Sciences, funded, in part, by Grant Number # UL1 TR000448 from the National Institutes of Health, National Center for Advancing Translational Sciences, Clinical and Translational Sciences Award (Zhou Y, Piccio, L, Lovett-Racke A and Tarr PI); R01 NS10263304 (Zhou Y, Piccio L); the Leon and Harriet Felman Fund for Human MS Research (Piccio L and Cross AH). Cantoni C. was supported by the National MS Society Career Transition Fellowship (TA-180531003) and by donations from Whitelaw Terry, Jr. / Valerie Terry Fund. Ghezzi L. was supported by the Italian Multiple Sclerosis Society research fellowship (FISM 2018/B/1) and the National Multiple Sclerosis Society Post-Doctoral Fellowship (FG-190734474). Anne Cross was supported by The Manny & Rosalyn Rosenthal-Dr. John L. Trotter MS Center Chair in Neuroimmunology of the Barnes-Jewish Hospital Foundation. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.


Assuntos
Microbioma Gastrointestinal , Esclerose Múltipla , Cromatografia Líquida , Microbioma Gastrointestinal/genética , Humanos , Metaboloma , Metagenômica , Esclerose Múltipla/etiologia , Espectrometria de Massas em Tandem
6.
Biol Res Nurs ; 24(1): 123-127, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34719978

RESUMO

Multiple sclerosis (MS), an inflammatory neurodegenerative disease of the central nervous system (CNS), afflicts over one per thousand people in the United States. The pathology of MS typically involves lesions in several regions, including the brain and spinal cord. The manifestation of MS is variable and carries great potential to negatively impact quality of life (QOL). Evidence that inflammatory markers are related to depression in MS is accumulating. However, there are barriers in precisely identifying the biological mechanisms underlying depression and inflammation. Analysis of cytokines provides one promising approach for understanding the mechanisms that may contribute to MS symptoms. METHODS: In this pilot study, we measured salivary levels of interleukin (IL)-6, IL-1beta (ß), and IL-10 in 24 veterans with MS. Descriptive statistics were reported and Pearson correlation coefficients were obtained between cytokines and depression. RESULTS: The anti-inflammatory cytokine IL-10 was significantly negatively associated with depression in veterans with MS (r = -0.47, p = .024). CONCLUSION: Cytokines may be useful for elucidating biological mechanisms associated with the depression and a measure for nurses caring for veterans with MS.


Assuntos
Esclerose Múltipla , Doenças Neurodegenerativas , Veteranos , Biomarcadores , Citocinas , Depressão , Humanos , Interleucina-10 , Interleucina-6 , Projetos Piloto , Qualidade de Vida
7.
Int J MS Care ; 23(4): 157-161, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34483754

RESUMO

BACKGROUND: Adults with multiple sclerosis (MS) experience many complex symptoms. However, research is lacking on the best method to record their symptom experience. The primary goal of this study was to test the feasibility of journal writing to capture the description of core symptoms experienced by adults with MS. A secondary goal was to collect self-report symptom data to assess concordance between the journal entries and MS-Related Symptom Checklist (MS-RS) scores. METHODS: A preselected group of participants (n = 5) from the total sample of 16 participants with MS were asked to complete the revised MS-RS and Web-based journal writing for 20 minutes per day for 4 consecutive days over a 4-week period. Feasibility was evaluated by journal completion rates. RESULTS: Most participants found journal writing acceptable as a method for writing about symptoms. Participants were able to write about symptoms that formed clusters: unpredictable physical alterations and unpredictable sensory and emotional changes. Likewise, participants reported frequent fatigue, difficulty sleeping, heat intolerance, and difficulty concentrating/cognitive problems from the revised MS-RS. Disconcordance between revised MS-RS data and journal entries included lack of disclosure of difficulty sleeping and "pins and needles" in the journals. CONCLUSIONS: Preliminary findings from this study provide the personal perspectives of core symptoms experienced by adults with MS. These results provide preliminary evidence of the feasibility of journal writing, along with self-report survey, to describe symptoms in adults with MS.

8.
J Child Neurol ; 36(10): 901-910, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34048290

RESUMO

BACKGROUND: The objective of this qualitative methods study was to develop the domains and items to support the content validity for the Pediatric Quality of Life Inventory (PedsQL) Multiple Sclerosis Module for youth with pediatric-onset multiple sclerosis. METHODS: A literature review of multiple sclerosis-specific questionnaires and clinical research was conducted to generate domains. An expert panel composed of 12 neurologists who were pediatric-onset multiple sclerosis specialists provided feedback on the conceptual framework. Focus interviews with 9 youth with pediatric-onset multiple sclerosis and 6 parents were conducted to develop the relevant domains and item content from the patient and parent perspective. In the cognitive interviews phase, 9 youth with pediatric-onset multiple sclerosis and 6 parents provided feedback on item content, relevance, importance, and understandability of the pediatric-onset multiple sclerosis-specific domains and items. The final interview phase with 5 youth with pediatric-onset multiple sclerosis and 5 parents comprised a pilot testing of the new PedsQL MS Module. RESULTS: Eighteen domains were derived from the qualitative methods with item content saturation achieved at 100 items based on 40 interviews with 23 youth with pediatric-onset multiple sclerosis aged 10-21 years and 17 parents. The domains derived include general fatigue, sleep/rest fatigue, cognitive functioning, tingling sensations, numbness sensations, physical weakness, pain, speech, balance, fine motor, vision, urination, constipation, bowel incontinence, worry, communication, treatment, and medicines. CONCLUSIONS: Qualitative methods involving 23 youth with pediatric-onset multiple sclerosis and 17 parents in the domain and item development process support the content validity for the new PedsQL MS Module. Future plans include a national field test of the PedsQL MS Module scales and items.


Assuntos
Esclerose Múltipla/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Reprodutibilidade dos Testes , Adulto Jovem
9.
J Health Psychol ; 26(1): 103-114, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32830587

RESUMO

Patient activation is an important aspect of self-management for adults with chronic non cancerous health conditions (CHC). However, there is limited evidence about which measures of patient activation and healthrelated quality of life are most useful to clinicians. This systematic review examined regarding the types of measures used to evaluate a patient's readiness for self-management including patient activation and healthrelated quality of life (HRQOL). Two such as measurements are the Patient Activation Measure (PAM) and overall PROMIS® Global health. Ten articles were identified which included measurement of patient activation and HRQOL. The results indicate that HRQOL is evaluated with various measurement tools. Most researchers agree that patient activation and the measurement of global HRQOL positively contribute to successful self-management strategies.


Assuntos
Participação do Paciente , Qualidade de Vida , Adulto , Doença Crônica , Humanos
10.
West J Nurs Res ; 43(3): 273-283, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32744186

RESUMO

We explored the feasibility of a mindfulness plus sleep education intervention, SleepWell!, delivered via videoconference compared to onsite among adults with MS. A non-randomized wait-list control design was used. Participants wore actigraphy watches and kept sleep diaries for seven days pre- and post intervention. Questionnaires were completed pre-intervention, post-intervention, and three months post-intervention. One group was conducted onsite. Three groups participated via videoconference. Attrition among videoconference groups was 23% compared to 57% in the onsite group. Within group analysis showed moderate-to-large effect sizes on sleep efficiency (d=0.78) and total sleep time (d=0.54) in the videoconference groups. One-way repeated measures ANOVA post-hoc analysis suggested small-to-medium effect over three months on sleep quality (ηp2 =0.28), physical health quality of life (ηp2 =0.42), mental health quality of life (ηp2 =0.13), and mindfulness (ηp2 =0.29). Results indicate feasibility of providing our intervention via videoconferencing. Preliminary analysis suggests that SleepWell! improves sleep and mindfulness among adults with MS.


Assuntos
Atenção Plena , Esclerose Múltipla , Adulto , Humanos , Saúde Mental , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Qualidade de Vida , Sono
11.
J Neurosci Nurs ; 52(6): E19-E23, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33156593

RESUMO

BACKGROUND: Mindfulness-based art therapy (MBAT) has been shown to provide a strategy for adults with multiple sclerosis (MS) to self-manage their symptoms. There is a need for the use of an MBAT intervention that can be delivered in any setting for adults with MS. The purpose of this pilot feasibility study was to test the feasibility and acceptability of an MBAT intervention delivered via videoconference. METHODS: We developed an MBAT intervention to be delivered by videoconference to adults with MS recruited from an academic center registry. We also conducted phone interviews to collect acceptability data. RESULTS: Most of the participants (n = 5) were very positive about the MBAT video sessions and stated content as clear and easy to follow and understand. The time and delivering method were acceptable. CONCLUSION: Mindfulness-based art therapy sessions delivered through videoconference are acceptable and feasible for adults with MS.


Assuntos
Arteterapia/normas , Atenção Plena/educação , Esclerose Múltipla/terapia , Gravação de Videoteipe/normas , Arteterapia/métodos , Estudos de Viabilidade , Humanos , Atenção Plena/normas , Esclerose Múltipla/psicologia , Projetos Piloto , Inquéritos e Questionários , Gravação de Videoteipe/métodos
12.
Complement Ther Clin Pract ; 41: 101246, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33075726

RESUMO

BACKGROUND AND PURPOSE: Many people with chronic medical conditions experience symptoms that are complex and negatively impact their quality of life (QOL). This review and meta-analysis examined the benefits of mindfulness based art therapy (MBAT) to relieve symptoms. METHODS: Included were studies that (a) evaluated an MBAT intervention in adults, (b) included a sufficient effect size and control group, and (c) assessed symptoms and QOL outcomes. RESULTS: Fourteen studies sampling adolescents and adults met inclusion criteria. Participants who received MBAT interventions reported significant improvements in psychological and physical symptoms indices compared to controls; the meta-analysis MBAT interventions revealed a medium effect size whereas that for controls the effect size was equivalent to zero. CONCLUSION: MBAT is a promising intervention for symptom relief. However, the literature is limited by the small number of studies. Randomized controlled trials with larger samples are needed to validate findings.


Assuntos
Ansiedade/terapia , Arteterapia , Depressão/terapia , Fadiga/terapia , Atenção Plena , Adolescente , Adulto , Humanos , Qualidade de Vida
13.
J Neurosci Nurs ; 52(4): 160-165, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32511174

RESUMO

BACKGROUND: Disease-modifying therapies (DMTs) are the cornerstone of multiple sclerosis (MS) treatment. DMT treatment is a preference-sensitive decision in which shared decision making is indicated. METHODS: We used qualitative methods to explore usability of MS decision aids in people aged 18 to 70 years diagnosed with MS. Semistructured interviews aimed to assess patients' overall reaction to using the decision aids. This included specific aspects of the user experience to improve readability, format, content, and patient opinions about whether the integration of the decision aids into visits with MS clinicians would be feasible and assist with making better DMT selections. RESULTS: Twenty-three interviews were completed with eligible patients with MS aged 18 to 70 years to improve readability. Using thematic analysis, 5 themes emerged from the analysis including decision aids are easy and understandable, include cost, prioritize side effects and tests, increase font size, and have a simpler injectable grid. We also identified areas for improvement including formatting, side effects of DMT options, transparency of data sources, research, and development. CONCLUSION: Overall findings suggest that the decision aids are usable, easy to understand, and helpful to facilitate shared decision making for DMT selection. This work will help guide further modifications to the prototype MS decision aids before publication and can inform the growing body of knowledge regarding the development of high-quality decision aids.


Assuntos
Técnicas de Apoio para a Decisão , Esclerose Múltipla/terapia , Preferência do Paciente/psicologia , Autocuidado , Adulto , Idoso , Estudos de Viabilidade , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade
14.
Rehabil Nurs ; 45(2): 80-87, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-30649037

RESUMO

BACKGROUND AND PURPOSE: Multiple sclerosis (MS) is a progressive neurological disorder, characterized by exacerbations and remissions, often resulting in disability affecting multiple neurological functions. The purpose of this article was (1) to describe the frequencies of self-reported symptoms in a natural environment and (2) to determine characteristics and associations between self-reported symptoms and home gait parameters (speed, stride time, and stride length) at baseline and at 3 months in patients with MS. METHODS: Participants completed the self-report MS-Related Symptom Scale to measure symptoms. A three-dimensional depth imaging system (Foresite Healthcare) was used to measure gait parameters in the home environment. RESULTS: These data show significant correlations between the following symptoms: knee locking or collapsing, difficulty sleeping, depression, and anxiety with decreased number of average walks per day; however, the symptoms including trouble-making toilet: day and difficulty in starting urine were positively correlated with average walks per day. The symptom numbness was significantly correlated with decreased speed and decreased stride length. DISCUSSION AND CONCLUSIONS: Our findings suggest that certain groups of symptoms were more frequently reported with certain gait parameters (stride time/speed) in persons with MS. Rehabilitation nurses can provide optimal care to prevent future decline in symptoms and gait.


Assuntos
Análise da Marcha/métodos , Monitorização Fisiológica/métodos , Esclerose Múltipla/complicações , Autorrelato/normas , Adulto , Feminino , Serviços de Assistência Domiciliar/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Monitorização Fisiológica/tendências , Esclerose Múltipla/classificação , Projetos Piloto , Estudos Prospectivos , Autorrelato/estatística & dados numéricos
15.
J Neurosci Nurs ; 51(6): 331-334, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31688283

RESUMO

BACKGROUND: Fatigue is a significant and burdensome symptom for patients with multiple sclerosis and is associated with other symptoms, signs, and decreased quality of life. METHODS: A prospective pilot study was conducted with a convenience sample (n = 34) of patients with relapsing-remitting multiple sclerosis using a phone application, FatigueApp.com, to collect data on patient-reported outcome measures (Patient-Reported Outcomes Measurement Information System [PROMIS]). RESULTS: FatigueApp feasibility was good, with the ability to collect data on self-reported fatigue and other symptoms using PROMIS measures. CONCLUSIONS: This study showed that using a phone application with PROMIS may be useful in the future to provide estimates of fatigue and other variables to facilitate clinical monitoring of fatigue for neurology clinic settings.


Assuntos
Fadiga/diagnóstico , Aplicativos Móveis , Esclerose Múltipla Recidivante-Remitente/complicações , Medidas de Resultados Relatados pelo Paciente , Estudos de Viabilidade , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Estudos Prospectivos , Autorrelato , Inquéritos e Questionários
16.
J Neurosci Nurs ; 51(1): 37-42, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30489419

RESUMO

AIMS AND OBJECTIVES: The aim of this study was to examine the relationships among multiple sclerosis (MS)-related symptoms, sleep hygiene behaviors, and sleep quality in adults with MS who self-report fatigue. BACKGROUND: Fatigue is a frequent, prevalent symptom among adults with MS. Few studies have examined the relationship among fatigue and other symptoms with sleep quality and sleep behaviors. DESIGN: This is a descriptive correlational study. METHODS: A convenience sample of 39 adults with MS were recruited for the study. Instruments used included the revised MS Related Symptom Scale and the Pittsburgh Sleep Quality Index. Correlations examined the relationships among fatigue and other MS symptoms with sleep quality and sleep hygiene behaviors. RESULTS: The frequency of several symptoms correlated with poor sleep quality, and fatigue frequency was higher in those who used electronic devices and practiced poor sleep hygiene behaviors. NURSING IMPLICATIONS: Nurses should incorporate interventions for symptoms that impact sleep quality. These findings suggest that sleep hygiene education should be a part of routine clinical care. CONCLUSION: Adults with MS experience the burden of many symptoms that impact sleep quality. Interventions that include education to improve symptoms, sleep hygiene behaviors, and sleep quality are needed.


Assuntos
Esclerose Múltipla/complicações , Higiene do Sono/fisiologia , Transtornos do Sono-Vigília/etiologia , Inquéritos e Questionários , Adulto , Fadiga/etiologia , Feminino , Humanos , Vida Independente , Masculino , Prevalência , Autorrelato
17.
J Neurosci Nurs ; 50(3): 171-176, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29652736

RESUMO

PURPOSE: The purpose of this article was to demonstrate the feasibility of using common data elements (CDEs) to search for information on the pediatric patient with multiple sclerosis (MS) and provide recommendations for future quality improvement and research in the use of CDEs for pediatric MS symptom management strategies Methods: The St. Louis Children's Hospital (SLCH), Washington University (WU) pediatrics data network was evaluated for use of CDEs identified from a database to identify variables in pediatric MS, including the key clinical features from the disease course of MS. The algorithms used were based on International Classification of Diseases, Ninth/Tenth Revision, codes and text keywords to identify pediatric patients with MS from a de-identified database. Data from a coordinating center of SLCH/WU pediatrics data network, which houses inpatient and outpatient records consisting of patients (N = 498 000), were identified, and detailed information regarding the clinical course of MS were located from the text of the medical records, including medications, presence of oligoclonal bands, year of diagnosis, and diagnosis code. RESULTS: There were 466 pediatric patients with MS, with a few also having the comorbid diagnosis of anxiety and depression. CONCLUSIONS: St. Louis Children's Hospital/WU pediatrics data network is one of the largest databases in the United States of detailed data, with the ability to query and validate clinical data for research on MS. Nurses and other healthcare professionals working with pediatric MS patients will benefit from having common disease identifiers for quality improvement, research, and practice. The increased knowledge of big data from SLCH/WU pediatrics data network has the potential to provide information for intervention and decision-making that can be personalized to the pediatric MS patient.


Assuntos
Algoritmos , Elementos de Dados Comuns , Esclerose Múltipla/diagnóstico , Adolescente , Criança , Bases de Dados Factuais/estatística & dados numéricos , Prática Clínica Baseada em Evidências , Feminino , Hospitais Pediátricos , Humanos , Masculino , Melhoria de Qualidade , Adulto Jovem
18.
J Neurosci Nurs ; 49(4): 241-246, 2017 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-28661948

RESUMO

Gait impairment represents one of the most common and disabling symptoms of multiple sclerosis (MS). To identify which temporal or spatial parameters of gait could be used as outcome measures in interventional studies of individuals with MS with different levels of disability, we evaluated characteristics of these parameters in a case study of 3 participants with MS, using 1 case as an exemplar and the other participants as validation. A case study of an exemplar participant was conducted with a 67-year-old woman with secondary progressive MS served as exemplar, with 2 other participants (52 and 55 years old) as validation. The primary outcome measures we used were stride time, stride length, gait velocity, and daily symptoms. Stride length and velocity of gait decreased with increasing pain and fatigue. The step time was significantly longer later in the day, whereas the step length remained the same. Stride length and velocity are associated with the level of fatigue and pain, as well as the time of day. These characteristics and parameters of gait need to be considered in future studies of gait in MS, with particular attention to temporality of occurrence in persons with MS.


Assuntos
Transtornos Neurológicos da Marcha/terapia , Limitação da Mobilidade , Esclerose Múltipla/complicações , Amplitude de Movimento Articular/fisiologia , Tecnologia Assistiva/estatística & dados numéricos , Adjuvantes Imunológicos/uso terapêutico , Idoso , Feminino , Transtornos Neurológicos da Marcha/etiologia , Acetato de Glatiramer/uso terapêutico , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/tratamento farmacológico , Andadores
19.
Disabil Health J ; 10(4): 587-591, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28351749

RESUMO

BACKGROUND: In individuals with multiple sclerosis (MS) comorbidities and quality of life (QOL) may be affected by tobacco use. OBJECTIVE: To evaluate the associations between smoking status, in particular quit attempts, and comorbidities among individuals with MS. METHODS: We used a web-based survey to obtain cross-sectional data from 335 individuals with MS who were members of the Gateway Chapter of the National MS Society email registry. We then examined the associations between smoking variables (current use, frequency, and quit attempts) and comorbidities. RESULTS: The prevalence of participants who ever smoked was 50%, which is greater than that reported for the general population; 20% were current smokers. Migraine headaches were associated with current use and everyday smoking, and those with recent failed quit attempts had a higher prevalence of depression than those who were current smokers but who did not attempt to quit or had successfully quit in the past year. CONCLUSION: Given the associations between smoking and comorbidities in individuals with MS, health care providers should both (1) assess smoking history and quit attempts, and (2) encourage individuals with MS who smoke to become non-smokers and refer for treatment, as indicated. In order to increase the chances that individuals will be successful in becoming non-smokers, clinicians would do well to also assess and treat depression in their patients who smoke and are also depressed.


Assuntos
Depressão/etiologia , Pessoas com Deficiência , Esclerose Múltipla/psicologia , Abandono do Hábito de Fumar , Fumar Tabaco/efeitos adversos , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Transtornos de Enxaqueca/etiologia , Prevalência , Qualidade de Vida , Inquéritos e Questionários
20.
Appl Nurs Res ; 33: 49-53, 2017 02.
Artigo em Inglês | MEDLINE | ID: mdl-28096022

RESUMO

In addition to the underlying health problems and disability associated with multiple sclerosis (MS) and cardiovascular disease (CVD), adults with each of these chronic illnesses are independently known to experience fatigue. While fatigue's influence on physical activity and health related quality of life (HRQOL) with each of these illnesses has been discussed, what is lacking is information on how fatigue impacts physical activity and health related quality of life, and ultimately self-management for adults with these conditions. Additionally, individuals may be unaware of the significance of maintaining optimal physical activity in order to maintain everyday function and self-management. Thus, the purpose of this article is to discuss the complex effect of fatigue on physical activity and HRQOL among adults with MS and CVD, and to present potential self-management strategies.


Assuntos
Doenças Cardiovasculares/fisiopatologia , Exercício Físico , Fadiga , Esclerose Múltipla/fisiopatologia , Qualidade de Vida , Adulto , Humanos
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