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DOI: http://dx.doi.org/10.20534/ELBLS-17-1-35-39
Naska Jonida, Lecturer of Gender Sociology, Social Sciences Faculty, University of Tirana, Albania
Puca Edmond, Service of Infectious Diseases, University Hospital Center, Tirane, Albania
Zekja Ilirjana,
Service of Neurology, University Hospital Center, Tirane, Albania
Kruja Jera,
Service of Neurology, University Hospital Center, Tirane Department of Neurology, University Hospital Center, Tirane, Albania
E-mail: Edmond-puca@yahoo.com
Indicators of social support in patients with multiple sclerosis in Albania
Abstract:
Multiple sclerosis is a chronic disease that attacks the central nervous system.
Objective: The aim of this one year study was to assess the impact of neurological disability in the overall social support domains. Indicators of quality of life are assessed too and social functions and roles, economic constrains, marital status, family relationships and education of patients are included in the study as complementary evidences.
Methods: We randomly selected 67 patients diagnosed with multiple sclerosis. Female were 51 (76.1%) and male were 16 (23.9%), mean disease duration was 6 years, (m)education 12 years. In this study social support constrains were measured by MSSS (Modified Social Support Survey) questionnaire (MSQLI scale) which has 4 subscales (I) — Tangible Support Subscale (TAN) II- Emotional/Informational Support
Subscale (EMI) III- Affectionate Support Subscale (AFF) IV- Positive Social Interaction Subscale (POS). Secondly, MSSS values were divided in 3 categories including: first category MSSS value = 25-45 (21% by total), second category = 45-65 (60%) and third category = 65-85 (19%).
Results: In patients with multiple sclerosis we found that mean MSSS subscales values were as follows: TAN — 64, EMI- 47, AFF- 56, POS- 48 (range 0-100). Comparison of means showed both EMI and POS had significantly lower MSSS rates; meanwhile Tangible support score indicate greater perceived support. For each of MSSS categories corresponding these levels of disability: First- 4.4 (3; 8), Second- 3.1 (2.5; 6) and Third- 2.6 (2; 5.5) points, assessed by ratings on EDSS (mean).
Conclusion: This study show lower MSSS rates and the major constrains was related with the lack of Emotional and Informational support followed by Positive Social Interaction. Harmonised analysis of all MSSS categories showed a direct correlation between reduced social support and overall severity of neurological disability.
Keywords: MSSS, Emotional and Informational Support, Positive Social Interaction Support, EDSS.
Introduction:
Multiple sclerosis (MS) is a chronic disease that attacks the central nervous system. It's a lifelong condition that can sometimes cause serious disability and it is most commonly diagnosed in people in their 20s and 30s [1]. This disease is about two to three times more common in women than men and the symptoms of multiple sclerosis vary from person to person. The main symptoms include: vision problems such as blurred vision, difficulty walking, problems with balance and co-ordination, numbness or tingling in different parts of the body, bladder and sexual problems, cognitive problems with thinking, learning, concentration and fatigue [2]. Multiple Sclerosis affects negatively on mental fatigue, social impairment, daily activities, and sexual relationships etc. Studying the social aspects of the disease and relations inside a social organization, it is of great importance and understanding of the complex relationships that stand between the individual, family, society and culture. The individual behavior ofeach patients influenced by the age, the degree of disability, the motor disability bring a change in personal independence and personality. Some social and psychological characteristics related with multiple sclerosis are deterioration of cognitive functions, changes in emotional-affective sphere, presence of unmotivated laugher, worsening of quality of life [3-5]. Knowing the disabled characteristics related to the multiple sclerosis, the patient creates a reactive situation that is reflected in the psychological and social plan as loss of work, the changes of role, reduced social activities, interpersonal relations. Of course all these anxiety reactions lead to a profound sense of despair, from where patient tends to overcome by seeking information about the disease [6].
The aim of this one year study was to assess the impact of neurological disability in the overall social sup-
port domains. To evaluate further social and economic indicators as functions and social roles, economic constraints, civil status, family relations and level of education in Neurology Service, UHC "Mother Theresa" during the period November 2008 — February 2009 was carry out a survey with 67 patients diagnosed with multiple sclerosis.
Materials and Methodology
Quality of Life (QOL) is impaired in multiple sclerosis in part due to physical disability. The methodology of the study is focused in comparing the Expanded Disability Status Scale (EDSS) and self-rated quality of life scores (MSSS) as measures of disease impact in MS patients. The EDSS is the most common outcome measure of impairment for MS patients [2]. The EDSS is an ordinal clinical rating scale ranging from 0 (normal neurologic examination) to 10 (death due to MS) in half-point increments. EDSS constitute one of the oldest and probably the most widely utilized assessment instruments in Multiple Sclerosis [7] Differences in quality of life scores were assessed after computing Expanded Disability Status Scale (EDSS) by the neurologist. The MSSS is a slightly modified version of the Social Support Survey developed as part of the Medical Outcomes Study in order to assess perceived social support [8]. The full-length MSSS consists of18 items and this instrument provides an assessment of several domains of social support including tangible support, emotional support, affective support, and positive support. Administration time is approximately 5-10 minutes for the full-length version. The MSSS is a structured, self-report questionnaire that the patient can generally complete with little or no intervention from an interviewer. However, patients with visual or upper extremity impairments may need to have the MSSS administered as an interview. According Psy-
chometric Properties the full-length version of the MSSS has a Cronbach's alpha of 0.97. In Service of Neurology "UHC" Mother Theresa a randomized control trial of patients (n=67) with a definite diagnosis of MS completed validated questionnaire of MultipleSclerosis Quality
Table 1. - Social and demographics c
of Life Inventory (MSQLI), section MSSS — Form with a particular attention to the positive social interaction. Complementary evidences about patients are collected over social and economic indicators, level of education and additional lifestyle features (see the Table I below).
'acteristic of participants in the study
Variables By total sample in%
Gender
Female 76.1
Male 23.8
Education
Elementary education (4-9 years of education) 41.7
High School 46.2
University 11.9
Economic Status
Employed 16.4
Unemployed or economic assistance 83.5
Marital status
Divorced 11.9
Unmarried 14.9
Married 74.6
The indicators used in this study are interpreted by harmonizing qualitative and quantitative analyses. In this study social support constrains were measured by MSSS (Modified Social Support Survey) questionnaire (MSQLI scale) which has 4 subscales (I) — Tangible Support Subscale (TAN) II- Emotional/Informational Support Subscale (EMI) III- Affectionate Support Subscale (AFF) IV- Positive Social Interaction Subscale (POS) while for clinical evaluation was used EDSS (Expanded Disability Status Scale).
Secondly, MSSS values were divided
in
3 categories including: first category MSSS value = 25-45 (21% by total), second category = 45-65 (60%) and
third category = 65-85 (19%). For each of categories correspond these levels of disability: First- 4.4 (3; 8), Second- 3.1 (2.5; 6) and Third- 2.6 (2; 5.5) points, assessed by ratings on EDSS (mean).
Results
In patients with multiple sclerosis we found that mean MSSS subscales values were as follows: TAN — 64, EMI- 47, AFF- 56, POS- 48 (MSSS score 0-100). Comparison of means showed both EMI and POS had significantly lower MSSS rates; meanwhile Tangible support score indicate greater perceived support (see the Figure 1).
Minimum Values ■ Max Values
Figure 1. Distribution of values over social support in MS patients (score 0-100)
The scoring system for the MSSS is relatively complex and generates a total score as well as subscale scores for Tangible support, emotional/informational support, affectionate support, and positive social interaction. Health-related quality of life (HQOL) is poor in multiple sclerosis (MS) but the clinical precipitants of the problem
are not well understood. Previous correlative studies demonstrated relationships between various clinical parameters and diminished quality of life in MS [9]. EDSS scores correlated highly with physical functioning and patients had lower mean scores for all four MSSS dimensions as showed above.
Figure 2. Relationship between EDSS
Disease time duration of total sample was 5.8 years and means age for female participants was 34 years old and 40 years old for males. The figure II shows the direct relationship between EDSS and Modified Social Support Survey. Further data analysing asses the association between neurological impairment and social — economic difficulties. Female patients reported elevated social isolation features measured in 76% by total. Fifteen percent ofsubjects interviewed and evaluated with moderate social problematic are divorced meanwhile the low education level (4-8 years of basic education) is represented by 42% of total sample. Over 50% of total interviewed patients (mean age 36) are classified with moderate social difficulties, to which correspond moderate levels of disability of 4.3 [3; 8] points, assessed by ratings on the Expanded Disability Status Scale (EDSS).
How often someone is available to inform you about disease and help you understand more about disease is another question directed to patients with multiple sclerosis. About 46 percent of patients answered that sometime is someone available to inform them about the disease and help them understand the situation. Lack of solidarity as an important societal value show that families and communities has lost the important role of the past in Albanian society.
Discussion
This study show lower MSSS rates and the major constrains was related with the lack of Emotional and In-
and Mean MSSS Score (score 0-100) formational support followed by Positive Social Interaction. Harmonised analyze of all MSSS categories showed a direct correlation between reduced social support and overall severity of neurological disability. Accomplishment of social functions and roles is associated with the scale of disease disability. Surely, social and economic inclusion plays an important role to the patient's life trajectory and multiple sclerosis reduces opportunities and appropriate choices of patients [6]. Psycho-social stress that characterizes a considerable part of patients is associated with the impossibility of socialization, education, communication, development of individual skills etc. Risk factors are associated with difficulty and resistance of adaption of patient with a chronic disease. There are significant changes in social roles inside a relationship, the family, the workplace, the community.
Social support evaluation, which are not reflected in the Expanded Disability Status Scale, should be given more attention in the treatment of Multiple Sclerosis and when evaluating interventions.
This study demonstrates that multiple sclerosis impaired quality of life, after accounting for physical disability, suggesting that treatment according to patients' answers can potentially improve QOL. Multiple sclerosis can be a challenging condition to live with, but new treatments over the past 10 years in Albania have considerably improved the quality of life of people with the condition.
Features of the immune status of patients with community-acquired viral pneumonia which was complicated.
Summarizing the existing evidences of this study about quality of life indicators we can conclude:
Multiple Sclerosis reduces real choices and opportunities to individuals, restricting individual actions and independence with a direct impact on quality of life.
The fulfillment of social roles and functions is linked to the degree of disability. Lack of solidarity as an important societal value show that families and communities has lost the important role of the past even in Albanian society.
The analysis of the data also highlighted a trend manifestation of isolation by the interviewed subjects leading to the reduction of social relations and social exclusion.
Disability in Multiple sclerosis was not directly correlated with age of patients but there was a correlation between disability and disease duration. Low levels of MSSS score are recorded in patients suffering from years by multiple sclerosis.
A multidisciplinary rehabilitation and intervention program improve the quality of life of people with multiple sclerosis and reduce the grade of disability. The presence of clinicists, psychologists, sociologists, social workers, physioterapists as an multidisiplinary team in clinical unit can improve the overall quality of life of patients with multiple scleorosis.
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DOI: http://dx.doi.org/10.20534/ELBLS-17-1-39-42
Sviatlitskaya Volha Ivanauna, MD, Associate professor of Belarusian Medical Academy of Post-Graduate Education E-mail: goodlife@tut.by
Features of the immune status of patients with community-acquired viral pneumonia which was complicated by development of the acute respiratory distress syndrome
Abstract: 30 patients with community-acquired viral pneumonia with laboratory confirmed diagnoses virus of an influenza A H1N1 (n=17) and a parainfluenza (n=13), complicated by the development of the acute respiratory a distress syndrome are examined. At these patients was established: decrease of proliferative activity of T lymphocytes, of quantity of serum immunoglobulins of a class M and G and active formation of immune complexes. At the died patients direct correlation dependence of quantity of the mononuclear cells which entered an apoptosis with the relative number of natural killers and absolute
