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Supporting Services
and Quality of Life in People with Multiple
Sclerosis
.........................................................................................................................
Mojtaba Azimian, MD ; Mostafa Eghlima, PhD;
Ghoncheh Raheb,Phd; Mitra Zohmand,MSc.; Asghar
Dadkhah, PhD.
University of Welfare and Rehabilitation science,
Tehran
Correspondence:
Dr Asghar Dadkhah,
University of Social Welfare and Rehabilitation,
Evin, Kudakyar Avenue,
Tehran 19834, Iran.
E-mail: asgaredu@uswr.ac.ir;
Mazimian@Yahoo.com
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ABSTRACT
Background and
aim: Multiple Sclerosis is one of
the most common non-traumatic and weakening
diseases of the CNS, which causes many
somatic, psychic and social problems;
and mainly has an unpleasant effect on
different aspects of the patient's and
their families' quality of life. This
study has been performed for evaluating
the relationship between supporting services
and different aspects of life quality
in MS patients in Tehran city.
Methods and
materials: This study was a coherence
type and done by simple random sampling
from active existing files in Iranian
MS association and Sina MS Super-specialist
clinic. Among these, 60 files were selected.
By estimating sample volume in coherence
research, sample volume was determined.
Life style was evaluated by a standard
questionnaire containing 54 questions
(MSQOl-54) and for evaluation of the type
and quality of supportive services the
researcher's questionnaire used 46 questions.
The relationship among variables was assessed
by statistical test of Spearman correlation
coefficient.
Findings: There
is significant relationship between supportive
services and these items: Promotion of
somatic health, decrease in somatic/emotional
limitations in performance of the role,
increase in psychological health, fatigue
decline, increase in health sense, optimization
of cognitive and social performance, decrease
in anxiety regarding health, improvement
in health condition and promotion of life
style from the patients' point of view.
There is no significant relationship between
supportive services and increase in sexual
performance of patients and pleasure from
their sexual performance.
Conclusion:
According to the results of this study
some procedures and activities can be
used for increasing supportive service
levels in MS patients who need these services
in order to promote their quality of life.
Key Words: Supportive
Services, Quality of Life, Multiple Sclerosis.
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Disease is not a selective phenomenon but it
is a fact that it is an unwanted accident. Frequently,
it has an abrupt and unpredictable onset and
affects the subject's performance, method of
life and his/her emotions1. MS is a chronic
disorder of the CNS with gradual deterioration.2
The type of its clinical condition changes from
benign to a rapidly growing form. It is usually
seen with coming and going attacks.3 This disease
is the most common reason for neurological illness
in the young and adolescents. According to the
disorder of the CNS, symptoms of this disease
may involve different parts of the body and
make patients significantly change their life
way and their aims. In addition to producing
somatic weakness, that is, they need special
treatment activities, MS imposes many psychic,
social and economic pressures on the patient
and his/her family and due to fatigue and illness
the patient depends on others which consequently
leads to depression and lack of self-confidence.
Sometimes there is a direct relation between
degree of weakness and incidence of social and
psychic problems in MS people.4 On the other
hand, because Ms is usually seen at ages less
than 40 years, it involves young, active and
productive people and consequently causes loss
not only in professional conditions of the patient
but also endangers society in from an economical
point of view. Among these, females are more
involved in this disease and as a result it
profoundly affect smatrimonial situations and
education of children and hurts families as
practical and productive units of society, and
deteriorates the health of future generations.2
In chronic diseases, one of the most important
aspects of the social, economic and treatment
supports is to consider the quality of life
of the patient.5 The importance of the quality
of life in this kind of disease rises from these
facts:
a) there is no treatment for this diseases.
On the other hand with improvements in industrial
and treatment aspects life time/duration of
patients can be increased.2 MS is a chronic
disease with unknown etiology and no exact treatment.6
Although the final and proposed aim is treatment
of MS, until finding an exact treatment for
that, it is very important to conserve and improve
MS patients' quality of life.
Ms International Federation (MSIF) introduces
indices-as supportive services for improving
MS patients' quality of life as follows:
Independence and authority, Medical care, continuous
care (such as availability of care and nursing
services in home and society for the patient,
as well as possibility of use of home for aged
or other day and night centers (boarding schools)
if residence place is not fit or proper for
the patients' needs); prevention of the disease
process and health improvement, support of family
members, proper transportation systems, providing
work opportunities and volunteers working for
patients, salary and cash aid, education, optimization
of existing buildings and residence areas in
society foruse by MS patient for an exteneed
time7.
According to Olive et al (1996) quality of
life has a multi-dimensional meaning8.
In this research, quality of life is divided
into 14 indices, according to somatic and psychic
dimensions; which are: somatic and psychic improvement,
decrease of somatic and emotional limitation
of the patient in performance of role, decrease
in pain/fatigue and anxiety of the patient regarding
his/her health, improvement of social/cognitive/health
condition of the patient, sexual performance
improvement and increase of patient's pleasure
from his/her sexual performance, and also improving
of health feelings and increment of quality
of life from the patient's point of view.9
Even if the disease process does not cease,
with delivering optimal supportive services, incidence or progress of most of the symptoms
of the disease can be decreased. Comfortable
life can be provided, life quality can be increased
and patients and their family can be helped
in solving most of the problems and in compromising
with the existing situation.2
Although there is no exact statistic of the
number of MS patients in Iran, primary estimations
show that about 35 to 40 thousand MS patients
live in Iran.10 The MS association of Iran have
announced 30 thousand MS patients as an exact
number of this disease.11
Research shows that there is significant increase
in the incidence rate of MS in recent years
in Iran and the age of incidence has decreased.10
So, with considering the ever increasing number
of MS patients and the vast variety of symptoms
and problems related to it and because research
which has been done I on MS mostly pertains
to medical treatment and less to social and
psychic symptoms, and because of the lack of
enough information about types and amount of
supportive services with various aspects of
patients' quality of life, the researcher with
the aim of evaluating supportive services and
quality of life of MS patients has performed
this study.
This research is of the coherence type and
pertains to the study of the relationship between
supportive services and MS patients' quality
of life. In this research among the active existing
files of the at the MS association of Iran and
Sina high professional (super-specialist) MS
clinic, 60 files by simple random method were
selected. For determining sample volume, establishing
method for sample volume in coherence research
has been used. Gathering research information
was done via interview with patients and by
standard questionnaire containing 54 questions
about MS patients' quality of life (MSQOL-54)
and a researcher-designed questionnaire regarding
supportive services. 14 indices of a patients'
quality of life were evaluated in two different
aspects: somatic and psychic.4
Supportive services questionnaire has two parts:
part 1 for obtaining demographic characteristics
and part 2 with 46 five-choice questions for
assessing supportive services.
MSQOL-54 questionnaire has been normalized
in Iran.12 Reliability of Researcher questionnaire
was obtained with a) comparison of predetermined
measuring criteria between this research and
other research; a) consultation with other researchers
and scientists who work on this issue and individuals
who are familiar with that. Consultation with
some teachers and instructors in social work,
psychology and neurology fields with experience
in MS disease and a doctor (MD) who has MS,
and agreement of all of them regarding questionnaire
content, confirmed reliability of the questionnaire.
On the other hand, reliability of the questionnaire
content was evaluated by a pre-test on 30 individuals
in the study group, and accordingly some changes
were made in the questions.
Sustainability of the mentioned questionnaire
was verified after doing the pre-test and by
calculation of a-Kronbach (a=0.87). Gathered
information was analyzed by SPSS 15 software.
By use of descriptive statistics, demographic
information and variables were described in
graphics, frequency/absolute tables. Statistical
test of Spearman correlation coefficient was
used for assessing relationship among variables.
Findings: In this study, 73% of the sample
were female and 27% male; among them 70% were
married, 27% were single and 3% divorced. The
biggest age frequency was between 26 to 35 years.
35% of study patients have university (graduate)
degree, 32% have diploma (under graduate degree)
and 33% have under diploma (secondary) education.
The age in 55% of patients was 4 years and more,
in 25% between 3 to 4 years and in 20% less
than 3 years. In this research, relationship
between supportive services and 14 indices of
quality of life in somatic and psychic point
of view, was assessed and there was no significant
relationship between supportive services and
12 of these indices, but these indices have
a significant relationship with supportive services.
| Table
1 Correlation
between supportive services and variables
of improvement somatic health, decrease
of somatic and emotional limitations in
performance of role, pain decrement and
psychic health improvement. |
| Statistical
Test |
Psychic
Improve-
ment |
Pain
decrement |
Decrease
of emotional limitation in performance of
role |
Decrease
of somatic limitation in performance of
role |
Somatic
improve-
ment |
Supportive services |
| Correlation
Coefficient |
**508/0 |
*315/0 |
*277
| 512**/0 |
282*/0 |
| Significance
Level |
0/00 |
014/0 |
032/0 |
0/00 |
029/0 |
| No |
60 |
60 |
60 |
60 |
60 |
*: p < 0.05
**: p < 0.01
There is a significant relationship among
services and somatic health improvement, decrease
in emotional and somatic limitation of patient
in performance of role, pain decrement and increment
of patient's psychic health (Table 1). So, with
increase of supportive service level providing
for patients, somatic and psychic health is
improved and amount of pain of patient and their
somatic / emotional limitation in performance
of role is decreased.
| Table
2 Correlation among supportive services
and variables of fatigue decrement, increment
of health sense, improvement of social cognitive
performance and decrement in anxiety about
health. |
| Statistical
Test |
Decrease
of anxiety |
Improve-
ment in cognitive performance |
Improve-
ment in social performance |
Improve-
ment in health feeling |
Fatigue
decrement |
Supportive services |
| Correlation
Coefficient |
**392/0 |
*276/0 |
*359/0 |
*305
| **465/0 |
| Significance
Level |
002/0 |
033/0 |
005/0 |
018/0 |
00/0 |
| NO |
60 |
60 |
60 |
60 |
60 |
*: p < 0.05
**: p < 0.01
There is a significant relationship among supportive
services and fatigue decrement, health sense
increment, social / cognitive performance improvement
and decline in anxiety of patients regarding
his/her health (Table 2). This means that with
introducing further supportive services to MS
patients, the amount of his/her fatigue and
anxiety regarding health is decreased, his/her
feeling about health is increased and his/her
social/cognitive performance is improved.
| Table
3 Correlation among supportive services
and variables of sexual performance improvement,
health situation improvement, increment
in pleasure of sexual performance and improvement
in quality of life from the patient's point
of view. |
| Statistical
Test |
Improve-
ment in quality of life from patient’s point
of view |
Increase
in pleasure from sexual performance |
Improve
in health condition |
Improve
in sexual performance |
Supportive services |
| Correlation
Coefficient |
*271/0 |
268/0 |
*289/0 |
179/0 |
| Significance
Level |
036/0 |
086/0 |
025/0 |
257/0 |
| NO
|
60 |
42 |
60 |
42 |
*: p < 0.05
There is a significant relationship among supportive
services, and improvement of health condition
and improvement in quality of life from the
patient's point of view (Table 3). But there
is no significant relationship between supportive
services and variables of sexual performance
improvement and increase of patient's performance
from his/her sexual performance. So, with increase
of supportive services level, patient's health
condition and quality of life (from his/her
point of view) is improved.
| Table
4 Correlation between supportive services
and somatic/psychic aspects of quality of
life. |
| Statistical
Test |
Psychic
dimension of quality of life |
Somatic
dimension of quality of life |
Supportive services |
| Correlation
Coefficient |
**487/0 |
504**/0 |
| Significance
Level |
00/0 |
00/0 |
| NO
|
60 |
60 |
*: p < 0.01
In this research the relationship between supportive
services and somatic/psychic dimensions of quality
of life have been evaluated separately (Table
4). With increment in supporter services level
(delivery to MS patients), there is improvement
in their somatic/psychic aspects of quality
of life.
Disease is an event which reduces quality of
life.13 MS is a chronic disease with various
and day-to-day changing signs and symptoms in
different individuals.14 This research depicts
that there is a significant relationship between
supportive services and somatic/psychic aspects
of quality of life of MS patients. As mentioned
in this study there is a significant relationship
between supportive services and all indices
of quality of life except variables of sexual
performance and patient's pleasure of his/her
sexual performance. Despite lack of presence
of any study regarding relationship between
supportive services and quality of life in MS
patients, but with considering research in the
same fields the following results can be elicited:
The findings of this research are consistent
with this fact that by increment in supportive
services delivered to MS patients their somatic/psychic
health is improved and patients' abilities for
doing everyday activities are increased and
they feel more pleasure, relax more and have
more enjoyment than before.
In addition, these results show that with increment
of supportive services, social/cognitive performance
of patients is improved and they will be able
to further participate in group work and activities
and to have more proper relationships with family
and friends and background people and also to
increase their concentration and attention on
long-term and thoughtful activities. Results
of this study depict that self-care works and
education/support programs have a significant
effect on increment of scores of quality of
life in MS patients in the fields of social/psychic/public
health performance. These mentioned results
are in agreement with the results of the present
study.15
Significant relationships between supportive
services and decrement in social/emotional limitations
of MS patients in performance of their role,
is another finding of this study. So if further
supportive services will be delivered to patients,
their problems in house and work place, due
to their social and sensual condition, which
results in limitation in performance of role,
would be decreased. Southerland et al (2005)
in a study in Australia under the title of "Method
of relaxation and quality of life of MS patients:
example for self-education" on 11 MS patients
(control group) and 11 MS patients (without
intervention as a control group) concluded that
use of these services cause more acceptance
of energy and less limitation in somatic/psychic
activities.16 These results are in agreement
with the present study.
Other findings of this research are consistent
with this fact that increase in supportive services
will decrease the amount of pain and fatigue
of the patient and the patient will have more
somatic abilities, more joy from his/her life
and experience and less weakness. Results of
one research project under the title of "Effect
of education on method of self-care and amount
of incidence of common problems in MS patients"
shows that education (one of the supportive
services indices in this research) is effective
in causing improvement in self-care and decrement
in fatigue and somatic pain of patients, which
ate one of the symptoms of MS disease.2 These
results are in agreement with the results of
this study.
Findings of this study show that there is a
significant relationship between supportive
services and health feelings and condition of
patients and decrement in anxiety regarding
their health. This means that with increase
in supportive services, health condition of
patients compromised previously will be increased
and they feel more relaxation and less anxiety
in this regard. In the study by di-Fabio et
al in America (1997) (one group of patients
with comprehensive rehabilitation services and
one group without these services) value of these
services in regard to improvement of quality
of life in correspondence with patients' health,
were shown.17 These results are in agreement
with the results of this present study.
In this research, also, relationship between
supportive services and improvement of quality
of life from the patient's point of view is
evaluated. According to these results, there
is a direct relationship between them. As a
result it can be deducted that with delivering
more supportive services, how the patients feel
about his/her life and his/her evaluation of
quality of life will be better. According to
Peres, quality of life, in fact, is a manifestation,
and projection of the patient's life experiences
on the base of an individual's views.18 So,
it is important to estimate the views and thoughst
of the patient regarding his/her health condition.19
According to the study by Benedickt et al (2005)
about the effect of different parameters regarding
prediction of quality of life, it is seen that
quality of life according to the patients view,
is the most powerful predictor in quality of
life of a MS patient.20
Since MS is a chronic disease with different
signs and symptoms, it has a great effect on
the life of patients and their family and mainly
affects their everyday, familial, vocational
and social activities and causes somatic/psychic
disorders, which result in decrement in quality
of life.
Because in the present study there is a significant
relationship between supportive services and
MS patients' quality of life , it is better
to make a positive step toward improvement of
quality of life of patients by increasing supportive
services levels delivered to MS-affected individuals
and consequently help them to experience better
and proper life.
Consultation services to patients and their
families for accepting, understanding and compatibility
with the present situation should be provided.
For improving some indices of quality of life,
which have had more correlation with supportive
services, delivering of proper procedures and
activities should have a preference. (in the
present research three indices for decrement
somatic limitation of patient in performance
of role, increment of psychic health and decrement
in fatigue have had , respectively, the most
correlation with supportive services) and every
possibility which increases supportive services
levels must be used for improving their quality
of life.
- Karimi Darman H.R.; Rehabilitation of special
group with a focus on social work services,
Tehran, Gostareh Publication; 2003.
- Raeisi H; Thesis on assessment of education
effect on self-care method and the incidence
of common problems in MS patients referred
to internal/neurology clinics of Shiraz city,
Iran medical sciences and health treatment
services university, 1998.
- Azimian M; Somatic and psychic rehabilitation
in MS patients; Journal of Rehabilitation.
No 3,2000.
- Murphy N, Confaureux C, Haas J, et. al.
Quality of life in Multiple Sclerosis in French,
Germany and the United Kingdom. Cost of Multiple
Sclerosis study Group, Journal Neurosurg Psychiatry
1988;65: 460-6.
- Dunn, Sheila A., et al. Quality of life
for spouses of CAPD patients Journal of advanced
Nursing,1994.
- Madani H,Navipoor H, Roozbayani P; Effect
of self-care on use of comparative procedures
by MS patients; Kashan Medical sciences and
health- treatment services univ., Journal
of Feyz, , year 9, No. 3; 53-57,2005
- Trisolini M, Wiener J, Miller D; Principles
to promote the Quality of Life of people with
MS. 2002 (www.
Nationalmssociety.org).
- Olive ,J, et al. Quality of life and Mental
Services .Firsted ,London , Rutledge ,1996
:14-18 .
- Barbara G.Vickrey, MD. Multiple Sclerosis
Quality of life (MSQOL)- 54 Instrument. Los
Angeles, University of callifornia,1995.
- Etemadifar M, No of MS-affected individuals
in Iran country (www.sanimemorirs.com/archives/2006/09/2)
- MS association of Iran; No of MS-affected
individuals in Iran(www.irmss.org)
- Borhani Haghighi A, Ghaem H; Study of quality
of life in MS patients ; translation and cultural
comparison of 54-question questionnaire regarding
quality of life of MS patients; Journal of
Brain and neuron sciences of Iran; year 4,
No. 11-10,40-56,2005.
- Cmilleri J, Brennan S. management of quality
of life in surgery, J, R, Surg, Edinb, 1999;44:252-259.
- Somerset M, Sharp D, Campbell R. multiple
Sclerosis and Quality of life; a qualitative
investigation. J Health servers policy 2002;7(3):151-9.Level
of Evidence: 3.
- Pahlavanzadeh S, Alimohammadi N; Effect
of self-care on quality of life in multiple
sclerosis referred to M.S clinic of Isfahan.2000.
- Sutherland G, Andersen MB, Morris T. Relaxation
and Health - related Quality of life in Multiple
sclerosis: The example of autogenic training.
J Behar Med. 2005;28,249-256.
- Di Fabio RP, Choit, Soderberg, J, Hansen
CR. Health-relate Quality of life for patient
with progressive Multiple Sclerosis. University
of Minnesota, 1977; 77(12) : 1704-16.
- Parse, Rosemire. R. Quality of life: Science
and living the art of human be coming. Nursing
science Quattery, 1994;7(1) :16-20.
- Ferel BR, Cohenn Ms, Rhiner M, Rozek A.
pain as a metaphor for illness. Part 2: family
caregiver's management of pain, oncology Nursing
Forum,1991;18(8): 1315-21.
- Benedict RH, Wahling E, Bakshi R. Fishman
I, Munschauer F, Zivadinor R, Weinstock Guttman
B. Predicting quality of life in multiple
sclerosis. J Neurol Sci, 2005;231 (1-2):29-34.
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