multiple sclerosis - social networking - quality of life
esclerose múltipla - rede social - qualidade de vida
Multiple sclerosis (MS) is a chronic illness of the central nervous system that affects
the physical[1], psychological[2] and social function[3] of patients. These disturbances have a negative impact in the daily life activities
and the quality of life of patients who are socially disadvantaged[4], because they often lose their jobs, economic and social status, friends and family[5],[6],[7].
In the last two decades, drug therapies that modify the MS natural history[8],[9], and the development of physical and psychological rehabilitation techniques[10], have represented major contributions to improving the quality of life of patients
and promoting their adaptation to the illness[11]. However, as those therapies are not curative and MS is a progressive disease, the
importance of social support in the long term must be highlighted. In this field,
several studies have shown that social support is an important positive factor in
the health related quality of life (HRQOL) of patients with MS and may decrease their
depressive symptoms[3],[12],[13],[14],[15],[16].
Conceptually, social support is a function of the social network that represents the
social relationships with which each person interacts, maintains contact or some form
of sharing[3]. These concepts are frequently described as equivalent, but, in fact, they are different
and have a distinct practical expression[17]. In practice, the social network is made up of all people with whom contact is maintained,
which includes the frequency, the social ties, involvement in religious groups, voluntary
associations and other groups[18].
The social support network (SSN) is a subset of the social network, in which people
are linked by social roles and relationships, whose functions are the exchange of
emotional support, financial assistance, guidance and advice in a variety of situations,
particularly when someone is sick[19]. The SSN may be measured by composition, size and participation in sports groups,
social meetings and voluntary work. Sociological studies conducted in Portugal have
shown that different types of social support is provided by the SSN, specifically,
by close family members[20]. This evidence revealed that the structure of the SSN seems to influence the social
support that is provided.
Research about the relationship between the SSN and HRQOL show that participation
in supporting groups is strongly linked to the decrease of anxiety and to satisfaction
with life[21]. Other studies about HRQOL with chronic patients have revealed that the patients’
SSN is less than the SSN of healthy people[19],[22]. The size of the SSN is less important for a patient than the ties between people.
For patients with Hodgkin’s lymphoma, the composition of the SSN, for example, friends
or close family, is associated with a better HRQOL[23]. However, there are no studies on the association between the SSN of MS patients
and their HRQOL.
All these aspects are the major reason for the aim of this study, which analyzed the
relationship between the SSN of patients with MS and their HRQOL.
METHODS
Patients
The sample included 150 adult patients with the diagnosis of MS according to the McDonald
criteria[24], consecutively evaluated at the Multiple Sclerosis Outpatient Clinic of Hospital
S. João, Porto, who gave their informed consent. Illiterate patients were excluded,
as well as those with physical and mental disabilities prior to the onset of disease.
The Ethics Committee of Hospital S. João approved the study.
Methods
Clinical data about the MS history, such as duration, clinical course and disability
assessed by the Expanded Disability Status Score (EDSS), were collected from medical
records[25].
Demographic data (age, gender, marital status, education level, profession) and the
evaluation of the social support network and quality of life were obtained in an interview
using a questionnaire specifically designed for this study.
Instruments
-
The EDSS results obtained after rating in the different Kurtzke functional systems
is the most widely-used scale for assessing the disability of patients with MS. It
is an ordinal scale with a range of values from 0 corresponding with a normal neurological
examination, and 10 with death due to MS. It shows increments of 0.5 between units
except between 0 and 1. A mild disability is determined by scores from 0 - 3.5, moderate
disability scores by between 4.0 - 6.0, and severe disability by scores greater than
or equal to 6.5[25].
-
The Medical Outcomes Study Social Support Survey was used to assess the social support
network. This scale was created and tested in a study of 2,987 adult users of health
services in Boston, Chicago and Los Angeles, who had at least one of the following
chronic diseases: hypertension, diabetes, coronary heart disease or depression[26]. The scale was translated and validated for the Portuguese language by Griep et
al.[18] The Medical Outcomes Study Social Support Survey comprises two subscales, one to
assess the SSN and another to assess social support. The SSN subscale has five questions
about composition, size and social contact frequency.
-
The HRQOL was assessed using the Health Status Questionnaire (SF-36v2) Portuguese
version of the Medical Outcome Study 36-Item Health Survey Short Form (SF-36)[27]. It is an evaluation scale to assess HRQOL, adapted and validated for the Portuguese
population, that measures eight dimensions of HRQOL based on the multidimensional
model of health that is divided into two main components - physical and mental. The
assessment of each item is made by using the method of points scored with values ranging
from 0 to 100, where higher scores indicate a better quality of life. The scores of
the fields are derived from the scores of items of that field and the scores of physical
and mental components are derived from the fields associated with them.
Statistical analysis
We used the Statistical Package for the Social Sciences - SPSS ® for Windows, version
20.0 computer program to perform the statistical analysis.
To analyze the magnitude of the relationship between SSN and HRQOL, Spearman’s correlation
was used.
RESULTS
The social and clinical characteristics of the sample are shown in [Table 1].
Table 1
Sample description (social characteristics and disease parameters).
|
Variables
|
n
|
%
|
M (± Dp:Range)
|
|
Age (years)
|
150
|
-
|
41.7 (10.5;18–70)
|
|
Sex
|
|
Female
|
106
|
70.7
|
-
|
|
Male
|
44
|
29.3
|
-
|
|
Marital status
|
|
Married
|
99
|
66.0
|
-
|
|
Single
|
25
|
16.7
|
-
|
|
Widow
|
9
|
6.0
|
-
|
|
Divorced or separated
|
17
|
11.3
|
-
|
|
School level
|
|
Inferior to primary education
|
19
|
12.7
|
-
|
|
Completed primary education
|
58
|
38.7
|
-
|
|
Completed secondary education
|
48
|
32.0
|
-
|
|
Completed higher education
|
25
|
16.7
|
-
|
|
Profession
|
|
Skilled workers
|
71
|
47.3
|
-
|
|
Unskilled workers
|
79
|
52.7
|
-
|
|
Clinical course of MS
|
|
Relapsing-remitting
|
128
|
85.3
|
-
|
|
Primary progressive
|
6
|
4.0
|
-
|
|
Secundary progressive
|
16
|
10.7
|
-
|
|
MS Duration (years)
|
150
|
-
|
9.1(6.4;1–25)
|
|
Disability
|
|
Low
|
103
|
68.7
|
-
|
|
Moderate
|
29
|
19.3
|
-
|
|
Severe
|
18
|
12.0
|
-
|
|
EDSS
|
150
|
|
2.5(2.4: 0–9)
|
MS: multiple sclerosis; EDSS: expanded disability status scale
The mean age of patients was 41.7 years and the ratio women:men was 2:4.
Most patients were married (66.0%), had a lower secondary education (12.7%; 38.7%)
and unskilled occupations (52.7%).The clinical parameters indicated that the form
of relapsing-remitting MS was the most common (85.3%), the mean duration of MS was
9.1 years (6.4; 1–25) and the disability score (68.7%) was low.
The composition of the SSN is shown in [Table 2].
Table 2
Social support network.
|
Questions
|
n
|
%
|
|
How many relatives can you trust to talk to about almost anything?
|
|
No relative
|
15
|
10.0
|
|
One relative
|
43
|
28.7
|
|
Two relatives
|
37
|
24.7
|
|
Three relatives
|
25
|
16.7
|
|
Four relatives
|
12
|
8.0
|
|
Five relatives
|
6
|
4.0
|
|
Six relatives
|
7
|
4.7
|
|
Seven relatives
|
4
|
2.7
|
|
Eight relatives
|
1
|
0.7
|
|
How many friends can you trust to talk to about almost anything?
|
|
No friends
|
38
|
25.3
|
|
One friend
|
32
|
21.3
|
|
Two friends
|
28
|
18.7
|
|
Three friends
|
16
|
10.7
|
|
Four friends
|
17
|
11.3
|
|
Five friends
|
9
|
6.0
|
|
Six friends
|
5
|
3.3
|
|
Seven friends
|
2
|
1.3
|
|
Eight friends
|
1
|
0.7
|
|
Ten friends
|
2
|
1.3
|
|
Have you participated in sports in a group in the last 12 months?
|
|
No
|
110
|
73.3
|
|
More than once per week
|
13
|
8,7
|
|
Once a week
|
2
|
1.3
|
|
Two or three times per week
|
18
|
12.0
|
|
Few times a year
|
7
|
4.7
|
|
Once a year
|
0
|
0.0
|
|
Have you participated in meetings in the last 12 months?
|
|
No
|
118
|
78.7
|
|
More than once per week
|
12
|
8.0
|
|
Once a week
|
5
|
3.3
|
|
Two or three times per week
|
10
|
6.7
|
|
Few times a year
|
0
|
0
|
|
Once a year
|
5
|
3.3
|
|
Have you participated in voluntary work in the last 12 months?
|
|
No
|
127
|
84.7
|
|
More than once per week
|
14
|
9.3
|
|
Once a week
|
2
|
1.3
|
|
Two or three times per week
|
1
|
0.7
|
|
Few times a year
|
5
|
3.3
|
|
Once a year
|
1
|
0.7
|
This composition consisted mostly of one to three relatives (28.7%; 24.7%; 16.7%).
However 10.0% of patients said they did not have a family member with whom they could
talk to about almost everything.
Concerning friends, 21.3% said they could not trust them. But on the other hand, most
said they could count on one or more friends to talk to about everything (74.75%).
Most patients did not participate in sports groups (73.3%), meetings (78.7%) or in
voluntary work (84.75%).
The relationship between the SSN and HRQOL is shown in [Table 3].
Table 3
Correlation analysis: Relationship between SSN and HRQOL.
|
Social support network
|
HRQOL Physical health
|
HRQOL Mental health
|
|
How many relatives can you trust to talk to about almost anything?
|
|
Correlation coefficient
|
0.227**
|
0.302**
|
|
Sig. (2-tailed); p-value
|
0.005
|
0.000
|
|
n
|
150
|
150
|
|
How many friends can you trust to talk to about almost anything?
|
|
Correlation coefficient
|
0.159
|
0.208*
|
|
Sig. (2-tailed); p-value
|
0.051
|
0.011
|
|
n
|
150
|
150
|
|
Have you participated in sports in a group in the last 12 months?
|
|
Correlation coefficient
|
0.283**
|
0.221**
|
|
Sig. (2-tailed); p-value
|
0.000
|
0.007
|
|
n
|
150
|
150
|
|
Have you participated in meetings in the last 12 months?
|
|
Correlation coefficient
|
0.280**
|
0.269**
|
|
Sig. (2-tailed); p-value
|
0.001
|
0.001
|
|
n
|
150
|
150
|
|
Have you participated in voluntary work in the last 12 months?
|
|
Correlation coefficient
|
0.245**
|
0.247**
|
|
Sig. (2-tailed); p-value
|
0.003
|
0.002
|
|
n
|
150
|
150
|
*Correlation is significant at the 0.05 level (2-tailed); **Correlation is significant
at the 0.01 level (2-tailed). HRQOL: health related quality of life; SSN: Social Support
Network.
A statistically significant correlation between the number of relatives, number of
friends, participation in sports groups, participation in meetings, participation
in volunteer work and the mental dimension of the HRQOL was found. The same correlation
was observed for the physical dimension except for the question about the number of
friends the patients could count on to talk to about almost everything.
DISCUSSION
The literature review showed that there are few studies on the association between
the SSN and HRQOL of chronic patients[17],[19],[22].
Moreover, there are no known studies about this field in MS patients. However, some
studies have shown that participation in supporting groups for patients with MS was
strongly linked to decreased anxiety and increased satisfaction with life[21], and supporting a person with MS had an impact on the lives of informal caregivers[28].
One explanation for the low frequency of this type of analysis may be linked to the
fact that the concept of a SSN is poorly defined, due to the heterogeneity in the
analysis of its dimensions held by investigators, and it sometimes is confused with
other close concepts, such as social support[17],[29]. This theoretical obstacle requires the construction of network measurement scales
of social support, systematizing the way of measuring all its dimensions. However,
there is consensus that the SSN should be assessed in its composition, size, frequency
of contact, and duration.
The composition may include family, neighbors and community organizations. The size
refers to the number of people present in the network. The assessment of the SSN may
capture the frequency of contacts between the number of people present and the duration
of such contacts.
The analyzed literature used different scales to assess the SSN: The Arizona Social Support Interview Survey
[22], the Norbeck Social Support Questionnaire
[19] and the Convoy of Social Support
[17]. These studies were cross-sectional types[17],[19]or descriptive approaches[22] with 224, 69 and 14 participants, respectively.
In this study, we used the Medical Outcomes Study Social Support Survey because it is adapted to the Portuguese language and was used in the measurement
of the SSN.
Considering the lack of studies on the relationship between the SSN and the HRQOL
of patients with MS, we compared the results of studies with other chronic patients.
The social characteristics of patients described in the literature showed different
results among them. However, we observed that patients with spinal cord injury[22]had a mean age of 47.5 years and 59.4 years for cancer patients[17]. These ages are characteristics of a productive period of life. These mean ages
are close to the ages of patients of this study ([Table 1]), which is younger than the patients of the other samples analyzed.
The patients were mainly married (66.0%) and female (70.7%). Most had middle socioeconomic
status, which included education (38.7%), and occupation (52.7%). No study presented
an assessment of the physical disability of patients in order to compare this with
MS patients (EDSS mean = 2.5; 2.4: 0 –9).
With regard to the size of the SSN ([Table 2]), the majority of MS patients reported that they had only one available person to
help (relative 28.7%; friends 21.3%), two or three family members (24.7%; 16.7%) or
friends (18.7%; 10.7%) to help. This result is in line with the results of the reviewed
studies, showing that the SSN is made up of family members and people that patients
consider as friends, which indicates that the size associated with the type of bond
has a positive effect in the social support for patients[3],[17],[19].
However, the relationship of other SSN dimensions (size, type of participants, contact
frequency) with the HRQOL of patients is not known. The analyzed studies concluded
that there was a statistically significant relationship between the SSN and HRQOL,
or that the SSN was associated with better HRQOL in the patients studied,[23] which was a source of the social support structure[19],[22] and group membership was strongly linked to life satisfaction[21]. These results are in accordance with the data from our study ([Table 3]) that showed statistically significant positive correlations between the SSN composition,
social group membership, participation in voluntary work, engaging in sports activities
in a group and the HRQOL (physical health and mental health dimensions). The fact
that someone has friends is correlated with the psychological dimension, but not with
the physical dimension, of the HRQOL.
Unlike other studies, we used the Medical Outcomes Study Social Support Survey because it also evaluates the levels of patient participation in sporting activities
in groups, attending meetings and participating in volunteer work. In this study,
the frequency of participation was low, because the majority of patients reported
they had not participated in activities in recent months, despite the levels of disability
of the disease being minimal. It can be assumed that MS is not a disease that affects
this kind of participation, which seems to be the result of an SSN being centered
in family and friends, and not in other social groups. However, despite the low participation
in the aforementioned social groups, this was correlated with the HRQOL, which gives
it a significant influence in this relationship.
In conclusion, social support network composition, social group membership, taking
part in group sports and participation in voluntary work, have an important role in
the HRQOL of patients with MS.
It is the SSN that provides the essential social support for the patient’s adaptation
to the daily living circumstances related to the disease.
The specialist working with MS needs to look at the individual patient and respective
SSN as important elements of adaptation to illness and HRQOL, and encourage patients
to participate in different social groups.
In practice, this study highlights the importance of a multidisciplinary team in repairing
the SSN that is often affected by the loss of social functions in MS patients.
