ABSTRACT
As human and economic resources are limited, especially in Latin America (LATAM), it is important to identify research priorities to improve multiple sclerosis (MS) patients care in the region. The objective was to generate a multidisciplinary consensus on research priorities in MS for patients care in LATAM by involving healthcare professionals and MS patient associations. METHODS: consensus was reached through a four-step modified Delphi method designed to identify and rate research priorities in MS in LATAM. The process consisted of two qualitative assessments, a general ranking phase and a consensus meeting followed by a more detailed ranking phase RESULTS: a total of 62 participants (35 neurologists, 4 nurses, 12 kinesiologists, 7 neuropsychologists and 4 patient association members) developed the process. At the final ranking stage following the consensus meeting, each participant provided their final rankings, and the top priority research questions were outlined. 11 research priorities were identified focusing on healthcare access, costs of the disease, physical and cognitive evaluation and rehabilitation, quality of life, symptoms management, prognostic factors, the need of MS care units and patient's management in emergencies like COVID-19. CONCLUSION: this work establishes MS research priorities in LATAM from multiple perspectives. To pursue the actions suggested could launch the drive to obtain information that will help us to better understand the disease in our region and, especially, to better care for affected patients.
Subject(s)
COVID-19 , Multiple Sclerosis , Humans , Latin America/epidemiology , Multiple Sclerosis/epidemiology , Multiple Sclerosis/therapy , Quality of Life , Research , SARS-CoV-2ABSTRACT
Individuals with multiple sclerosis (MS), especially those living in Latin America, often require assistance from family caregivers throughout the duration of the disease. Previous research suggests that family caregivers may experience positive and negative outcomes from providing care to individuals with MS, but few studies have examined the unmet needs of individuals providing care to family members with MS and how these unmet needs may mediate the relationship between MS symptoms and caregiver mental health. The current study examined the relationships among MS impairments (functional, neurological, cognitive, behavioral, and emotional), unmet family needs (household, informational, financial, social support, and health), and caregiver mental health (satisfaction with life, anxiety, burden, and depression) in a sample of 81 MS caregivers from Guadalajara, Mexico. A structural equation model demonstrated the mediational effect of unmet family needs on the relationship between MS impairments and caregiver mental health. These findings suggest that intervention research on MS caregivers in Latin America may consider focusing on caregiver mental health problems by addressing unmet family needs and teaching caregivers ways to manage the impairments of the individual with MS.
Subject(s)
Caregivers/psychology , Family/psychology , Health Services Needs and Demand , Mental Health , Multiple Sclerosis , Adult , Depression/psychology , Female , Humans , Male , Mexico , Middle Aged , Personal Satisfaction , Social Support , Surveys and QuestionnairesABSTRACT
BACKGROUND: Multiple sclerosis (MS) rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. METHODS: This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory), health-related quality of life (HRQOL; Short Form-36), and social support (Interpersonal Support Evaluation List-12) in 81 (66.7% women) Mexican MS caregivers. RESULTS: As compared to men caregivers, women had lower mental health (p = 0.006), HRQOL (p < 0.001), and social support (p < 0.001). This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, p = 0.018) and for nearly three times as many months (66.31 versus 24.30, p = 0.002). CONCLUSIONS: Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America-particularly for women caregivers-should address the influence of gender-role conformity on care and psychosocial functioning.
Subject(s)
Caregivers/psychology , Cost of Illness , Mental Health , Multiple Sclerosis , Quality of Life/psychology , Sex Characteristics , Social Support , Adult , Anxiety/psychology , Depression/psychology , Female , Health Status , Humans , Male , Mexico , Middle Aged , Personal Satisfaction , Self Concept , Young AdultABSTRACT
BACKGROUND AND OBJECTIVE: Women with multiple sclerosis (MS) who intend to get pregnant are often advised to discontinue disease modifying therapy (DMT) prior to conception. This recommendation is not based on medical evidence and may interfere with disease control by immunomodulatory drugs. The present study was designed to help discuss the effect of DMT for MS on pregnancy and on disease course. PATIENTS AND METHODS: Retrospective data from 152 pregnancies of 132 women with MS were collected by the physician in charge of the case. All data were entered into a specific file for qualitative and quantitative statistical analysis. RESULTS: From the total group of patients, 89 pregnancies occurred without any exposure to MS drugs, while 61 pregnancies occurred with at least eight weeks of exposure to MS immunomodulatory drugs. The rate of obstetric and neonatal complications was similar in both groups, except for the newborn weight and height which was smaller for mothers receiving medications. Mothers' post-delivery relapse rate and EDSS scores in the follow-up period were significantly higher in the absence of treatment. CONCLUSION: It is possible that, with further such supportive data, international guidelines on MS treatment in young women who intend to get pregnant may need to be revised.
Subject(s)
Immunologic Factors/adverse effects , Immunologic Factors/therapeutic use , Multiple Sclerosis/complications , Multiple Sclerosis/drug therapy , Pregnancy Complications , Adult , Argentina , Brazil , Breast Feeding , Cesarean Section , Databases, Factual , Delivery, Obstetric , Disease Progression , Female , Glatiramer Acetate , Humans , Infant, Newborn , Infant, Newborn, Diseases/chemically induced , Infant, Newborn, Diseases/epidemiology , Interferons/adverse effects , Male , Mexico , Obstetric Labor Complications/epidemiology , Peptides/adverse effects , Pregnancy , Recurrence , Retrospective Studies , United KingdomABSTRACT
PURPOSE/OBJECTIVE: The objectives of this quantitative correlational study were to: (a) determine the frequency and level of distress associated with patients' symptoms as reported by caregivers of individuals with multiple sclerosis (MS), (b) determine the prevalence of depression in these caregivers, and (c) examine the relationship between these caregivers' total symptom distress and depression after controlling for patient, caregiver, and illness characteristics. METHOD/DESIGN: In this quantitative correlational study, data from 79 caregivers of individuals with MS in Mexico were analyzed. RESULTS: The patient symptoms with the highest average level of distress for caregivers were depression, difficulty talking, difficulty hearing, becoming upset easily, and upsetting other people. Patient symptoms with the lowest average level of distress for caregivers included difficulty learning, seizures, trouble reading, difficulty eating, and difficulty writing. Forty percent of the caregivers met the criteria for probable major depressive disorder. Results of a multivariate regression analysis showed that caregiver total symptom distress was significantly related to caregiver depression, after controlling for patient marital status, caregiver gender, caregiver relationship to patient, caregiver current employment, and months spent caregiving. CONCLUSIONS: These findings have implications for MS patients and caregivers as well as larger society, as depression in caregivers often results in the institutionalization of individuals with chronic illnesses and disabilities, which is costly for both individuals and society. In addition, there might be increased expenditures associated with the caregivers' own declining health. For these reasons, it is important to develop a better understanding of its risk factors to identify caregivers who might benefit from intervention.
Subject(s)
Anxiety Disorders/ethnology , Anxiety Disorders/psychology , Caregivers/psychology , Cost of Illness , Depressive Disorder, Major/ethnology , Depressive Disorder, Major/psychology , Multiple Sclerosis/psychology , Multiple Sclerosis/rehabilitation , Activities of Daily Living/classification , Activities of Daily Living/psychology , Adult , Anxiety Disorders/diagnosis , Anxiety Disorders/epidemiology , Cross-Sectional Studies , Depressive Disorder, Major/diagnosis , Depressive Disorder, Major/epidemiology , Disability Evaluation , Female , Humans , Institutionalization , Male , Mexico , Middle Aged , Statistics as Topic , Stress, Psychological/complications , Surveys and QuestionnairesABSTRACT
OBJECTIVE: To determine the oxidative stress markers in serum from patients with relapsing-remitting multiple sclerosis. METHODS: Blood samples from healthy controls and 22 patients 15 women (7 aged from 20 to 30 and 8 were > 40 years old) and 7 men (5 aged from 20 to 30 and 2 were > 40 years old) fulfilling the McDonald Criteria and classified as having Relapsing-Remitting Multiple Sclerosis accordingly with Lublin were collected for oxidative stress markers quantification. RESULTS: Nitric oxide metabolites (nitrates/nitrites), lipid peroxidation products (malondialdehyde plus 4-hidroxialkenals), and glutathione peroxidase activity were significantly increased in serum of subjects with relapsing-remitting multiple sclerosis in comparison with that of healthy controls. These data support the hypothesis that multiple sclerosis is a component closely linked to oxidative stress.