Functional and self-care capacity of people with multiple sclerosis

Objective: describe the self-care and functionality levels of patients with multiple sclerosis and determine whether sociodemographic, clinical and functional variables interfere with self-care and/or functionality. Method: correlational, cross-sectional study with a quantitative approach performed with individuals in outpatient follow-up. We collected sociodemographic and clinical data and applied the Appraisal of Self-care Agency Scale, the Barthel index, the Lawtton and Brody Scale, and the instrument to investigate the performance in Advanced Activities of Daily Living. We performed descriptive and inferential analysis. Results: most patients were classified as “having self-care” (82.14%); with moderate dependence (51.19%) for the basic activities of daily living, partial dependence for the instrumental activities of daily living (55.95%), and more active for the advanced activities of daily living (85.71%). Patients with longer disease duration had a higher number of disabilities and, in those with better socioeconomic and educational profile, the functionality was better. Conclusion: disease duration was strongly correlated with a higher number of disabilities and better socioeconomic and educational profiles showed to be protective factors for functionality. Care planning should consider the needs observed by the multidisciplinary team, stimulating the development of self-care, functionality and sociability.


Introduction
Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system (CNS), with an autoimmune, demyelinating character that leads to defects in the conduction of synapses. This results in motor and sensory deficits that can last for days or weeks and are completely or partially reversible.
The disease affects about 2.5 million people in the world, in the age group from 20 to 45 years, mostly women, with a higher prevalence in temperate regions (2)(3) . In Brazil, although the distribution is still not well known, the Southeast region has a higher prevalence, of 15 cases/100,000 habitants (5-6) . The etiology is unknown, but it is suggested that it is a multifactorial event, caused by genetic predisposition, autoimmune disease, environmental factors, emotional and/or psychological stress (1)(2)(3)(4) .
Typically there may be numerous restrictions for the individual, initiated with uncontrollable fatigue or weakness, which may be followed by paresis or hemiparesis, spasticity, gait alteration, incoordination of movements and involuntary tremors. The most common symptoms are monocular visual loss due to optic neuritis, double vision caused by brain stem dysfunction, sensory loss because of transverse myelitis and/or ataxia due to a cerebellar lesion (1)(2)(3)(4)(5)(6)(7)(8) .
Other manifestations are cognitive dysfunction, in which there are difficulties to maintain attention, alterations in verbal fluency, decreased information processing capacity and memory problems. There may also be alterations in language (dysarthria and/or aphasia), vesical symptoms (alterations in frequency/ urgency), intestinal symptoms (constipation more often), as well as autonomic dysreflexia that can lead to cardiovascular alterations, thermal deregulation, or heat sensitivity (7)(8) . Other conditions that may not be visible to healthcare professionals include anxiety, stress, depression, pain, altered sleep patterns, and sexual dysfunction (1)(2)(3)(4)(5)(6)(7)(8) .
Considering this context, it is important to discuss the rehabilitation of individuals with MS, because it is an incapacitating disease that gradually affects the person's self-care capacity and causes functional decline, evidenced by the evaluation of basic, instrumental, and advanced activities of daily living. Such activities, if compromised, may have an impact not only on self-care, but also on quality of life, social interaction, and may contribute to the isolation of the individual (9)(10) .
Self-care is defined by the World Health Organization (WHO) as "the capacity of individuals, families and communities to promote health, prevent disease, maintain health, and deal with diseases and disabilities with or without support from a health care provider" (11) . Functionality, according to the International Classification of Functioning, Disability and Health (ICF), reflects the interaction between the health condition and the environmental and personal context of the individual and depends on the preservation of autonomy and independence, which are ensured by the preservation of cognition, humor, mobility, and communication (12) . This evidences that the relation between these constructs is bidirectional: functional capacity affects self-care and vice-versa.
In this context, nurses have a fundamental role in integrating the multidisciplinary team and ensuring the promotion, protection, and rehabilitation of health, focusing on the maintenance of self-care and on the functionality of these patients. However, we noticed a shortage of scientific publications, including nursing, to address this issue. Therefore, the objectives of the study were to describe the levels of self-care and functionality of patients with multiple sclerosis and to verify if sociodemographic, clinical, and functional variables interfere with self-care and/or functionality. We believe that this study may contribute to improve the care, the professionals' understanding about functionality and selfcare, and to the development of rehabilitation services.

Method
Correlational, quantitative, and cross-sectional study carried out in outpatient clinics of a public tertiary hospital in the city of Campinas, São Paulo, Brazil, from October to December 2017. We included patients regardless of disease diagnosis time, aged above 18 years, and excluded those with other neurological diseases.
The sample size was calculated with the objective of evaluating the correlation between functionality and self-care by Pearson's correlation coefficient. We assumed a test power of 80%, a significance level of 5%, an estimate for the correlation coefficient equal to 0.30, which can be considered a coefficient of average degree, and a correlation coefficient equal to 0.00 as null hypothesis (13) . The calculation resulted in a minimum sample of 84 patients. To perform the sample calculations we used the G*Power 3.1.9.2. software.
The LBS evaluates the functional condition for instrumental activities of daily living (IADL) graded as to the degree of assistance required for each activity, namely: use telephone, shop, prepare meal, perform domestic activities, use means of transport, take medications, and manage finance (14) . The score for each item ranges from 1 to 3 and, for global interpretation, the scale was converted into three groups: equal to or lower than 7 means total dependence; from 7 to 20 corresponds to partial dependence; and equal to 21 expresses independence (21) .
The BI evaluates the basic activities of daily living (BADLs) and aims to evaluate independence (physical or verbal) in personal care, mobility, locomotion, and eliminations. It has ten items and each one is scored according to the patient's performance. The score ranges from 0 to 100: a total of 0-20 indicates total dependence; 21-60, severe dependence; 61-90, moderate dependence; 91-99, slight dependence; and 100, independence (17,22) .
To evaluate the AADLs we used the same instrument (2) visiting friends and family members at their homes; (3) care or assistance to other people (including personal care, transportation, purchases for family or friends); (4) voluntary work outside the home; (5) trip out of the city spending at least one night out; (6) participation in any regular exercise program (e.g. sports, physical exercises, walks and corporal practice groups); (7) inviting people to come to your home for meals or leisure; (8) go out with other people to public places such as restaurant or cinema; (9) conducting some manual activity, crafts or artistic activity; (10) participation in organized social activities (clubs, community or religious groups, elderly coexistence centers, bingo); (11) using computer, including the Internet; (12) driving motor vehicles (18) .
The questions for evaluating the AADLs were answered through a scale with five answer options (always, often, occasionally, rarely, and never).
The answers: always, often, and occasionally were considered as performance of the activity and received value 1. The total score ranged from 0 to 12, being classified as "more active" those who performed five or more activities (18) .
We qualitative variable with more than two categories and one quantitative variable, we applied the non-parametric Kruskal-Wallis test, followed by Dunn's post-test (23)(24) .
We applied the Spearman correlation coefficient to check the correlations between the quantitative variables and used the following classification: 0.1 to 0.29 (weak correlation), 0.30 to 0.49 (moderate correlation), and greater than or equal to 0.50 (strong correlation) (13) . To study the associations between the qualitative variables, we applied the Pearson's chi-squared test and, for the cases in which the assumptions were not met, we used Fisher's exact test (23)(24) . For all analyses we used the statistical software SAS version 9.4 and SPSS version 24.0. and Natalizumab (26.2%). When evaluating the influence of functioning and sociodemographic measures on the ASA-R, we found no correlation between the variables (Table 2).

By investigating in isolation the influence of clinical
variables on patient self-care, we found that only the presence of pyramidal manifestations interfered with this measure (p=0.0281). Classification for AADL || 6,6 (2,9) 6,5 1,0 -12,0 More active 72 (85,7) Less active 12 (  with higher income were more active for AADLs (Table 3).    impact on functional capacity, to rapidly accumulating disability, loss of independent ambulation, and extensive cognitive impairment (29) .
Regarding the profile of our patients, there was in the first 10 years of the disease, patients tend to be slightly more dependent to perform the activities of daily living and with a greater need for self-care (27) . have shown worse prognosis and loss of functional reserve, which will limit their self-care in advance (4) .
This reinforces the idea that biopsychosocial mechanisms are associated with the level of disability.
Since MS is a neurodegenerative disease, it affects neural structures, which hinders or even prevents the transmission of stimuli to the other systems and organs of the body, and this has direct impact on cognition, sphincter control, manual skills, mobility, transfer, and is evident in difficulties to perform the basic and instrumental activities of daily living (26,42) . These factors should be considered in the survey of nursing diagnoses performed by nurses (30,43) .
A study aimed at implementing the Systematization  (10) .
Often times, after the onset of demyelinating diseases, psychiatric disorders may arise (8) . From this perspective, the maintenance of AADLs, related to social interaction, are beneficial to these patients, because they generate benefits for both physical and psychological health. In addition to improving self-esteem, decreasing social isolation and the onset of depressive disorders (30) .
Some studies have also pointed out the protective effect of AADLs by decreasing cognitive declines and the onset of dementia, avoiding the decline of memory and language, executive functions, attention, and global cognitive functions (8,44) . Therefore, nurses should act since the onset of the first clinical manifestations, by providing emotional support to the person, who will possibly be shaken, due to the possible disabilities and the changes that will occur not only in the body, but also in the lifestyle (8,26) . This may be conducted through motivation to preserve self-care activities, as well as through support and suggestion of alternatives for the functional disabilities (10,30) .
The planning of care, as well as its implementation must be consistent with the needs observed, considering, mainly, the time of manifestation of the disease, since we know that it has a crucial role for functional decline.