Quality of life of people with multiple sclerosis and their caregivers

Background: Multiple sclerosis (MS) is a chronic disease that interferes with the quality of life (QoL) of people with MS and their caregivers. Objectives: To assess the perception of QoL of people with MS and their caregivers. To assess the perception of QoL of people with MS and their caregivers according to gender. To compare the QoL of people with MS with the QoL of their caregivers. Methodology: Application of a questionnaire on the sociodemographic characteristics and QoL (WHOQOL-Bref) in 2 groups, and clinical profiling of people with MS. Results: People with MS and caregivers have a better perception of QoL in the domain of Social relationships and a worse perception in the physical domain. Women with MS and male caregivers have better QoL. The QoL of people with MS is different from that of caregivers, with a statistically significant difference in the overall QoL and general Health (p=.039), Physical (p=.001), and Environment (p=.012) domains. Conclusion: The results suggest that people with MS have worse QoL than caregivers. A nursing intervention should be planned to improve the QoL of both patients and caregivers.


Introduction
Multiple sclerosis (MS) is a chronic neurologic disease that influences the quality of life (QoL) of people at the physical, psychological, and social levels.It affects mainly fully capable young adults, hinders the accomplishment of their projects, and creates uncertainty about their future.In Portugal, the estimated prevalence of this disease is 46.3/100,000 inhabitants (Carvalho et al., 2014).It also has an impact on family members, who have to make the transition to the role of caregivers at some point of their lives.Based on this issue, we intend to assess the QoL of people with MS and their caregivers.The sample of this study was composed of users of the outpatient consultation and day hospital of the Neurology Unit of the Hospital Center of Baixo Vouga, E.P.E., Aveiro.This study aimed to assess the perception of QoL of people with MS, to assess the perception of QoL of caregivers, to assess the perception of QoL of people with MS and their caregivers according to gender, and to compare the QoL of people with MS with the QoL of their caregivers.

Background
MS is a chronic, progressive, and disabling demyelinating disease, with an unpredictable evolution, which adversely affects the well-being and QoL of patients and their families (Kouzoupis, Paparrigopoulos, Soldatos, & Papadimitriou, 2010).It is the most common, non-traumatic cause of disability in young adults aged 20 to 40 years, with a higher incidence in women at a 2.3:1 ratio (Guimarães & Sá, 2014).The pattern of disease progression changes over time.It is initially characterized by episodes of exacerbation of the inflammatory activity (outbreaks) alternated with periods of remission or a gradual deterioration of the neurological function or even a combination of both.In accordance with the standard classification, the clinical forms of MS are relapsing-remitting (80-85%), secondary-progressive, primary progressive, and progressive-relapsing (Guimarães & Sá, 2014).The evolution and severity of signs and symptoms vary from person to person, but the most frequent ones are fatigue, spasticity, and cognitive, visual, motor, sensory, cerebral, emotional, urinary/bowel, and sexual alterations (Guimarães & Sá, 2014).As a chronic disease, MS implies restructuring and adaptation since patients and their relatives have to learn how to deal with this new disease situation.Living with a chronic disease depends on individual characteristics, cultural beliefs, acceptance, and life expectations.It has a strong impact on future projects, education, social relationships, marriage, family and professional life.In this dynamic process, the disease of one family member becomes a family disease, affecting the QoL of the family as a whole (Kouzoupis et al., 2010).The transition to the role of caregiver is a situational transition (Meleis, Sawyer, Im, Hilfiger Messias, & Schumacher, 2000), which requires caregivers to reorganize their day-to-day and to give up on things that are important to their well-being.Caregivers can perceive their role both as a rewarding/gratifying experience due to the importance of the care provided to patients and its recognition and the strengthening of bonds, and as an immersive/stressful experience, which requires physical and psychological efforts and time to adjust to this new role (Pereira & Silva, 2012).QoL is a multidimensional and subjective concept that is defined as individuals' perception of their position in life within the context of their culture and value systems and in relation to their goals, expectations, standards, and concerns (The WHOQOL Group, 1998).The interest in QoL is recent.For years, the impact of this disease was limited to the assessment of disability (Benito, Morales, Rivera-Navarros, & Mitchell, 2003).Caring for a person with chronic disease implies a lack of time for the caregiver, leads to social isolation, stress, and emotional suffering (Patti et al., 2007;Sousa & Pereira, 2007).

Research questions
In this study, we have formulated the following research questions: What is the perception of QoL of people with MS?; What is the perception of QoL of caregivers of people with MS?; What is the perception of QoL of people with MS and their caregivers according to gender?; What is the difference between the perception of QoL of people with MS and the perception of QoL of caregivers?

Methodology
The methodological procedures sought to support a quantitative, descriptive, correlational, and cross-sectional approach.The population consists of all people with MS in the Hospital Center of Baixo Vouga, E.P.E., Aveiro, and their caregivers.Data were collected in the outpatient consultation and in the sessions of the day hospital of the Neurology Unit, between May 2010 and December 2013.The nonprobability and convenience sample consisted of 100 people: 50 people with MS and 50 caregivers.The following inclusion criteria were applied to the sample of people with MS: Person with MS diagnosed for at least 6 months, aged 18 years or more, after informed consent; and as exclusion criteria: people with diagnosis other than MS, with dementia or experiencing an outbreak.The following inclusion criteria were applied to the caregivers: aged 18 years or more, after informed consent; and as exclusion criteria: person with dementia.The ethical-legal procedures were followed, namely institutional authorization.All participants agreed to participate in the study voluntarily and free of charge.Data confidentiality and anonymity were ensured.Data were collected through the application of a questionnaire for sociodemographic characterization to people with MS and their caregivers (gender, age, level of education, marital status, family and professional situation).Clinical profiling was only applied to people with MS (current symptoms, number of outbreaks in the past 12 months, type of MS, duration of disease, level of disability assessed by the Expanded Disability Status Scale [EDSS], and treatment).The EDSS was developed by John Kurtzke for assessing neurological impairment and disability in the person with MS.It is an ordinal scale composed of eight main sectors.The total score reflects the level of disability of the person with MS and is obtained by the score sum of the functional systems (FS): visual, brainstem, pyramidal, cerebellar, sensory, sphincter (bladder/bowel), and cerebral functions and ambulation.Scores range from 0 to 10, with half points.Zero corresponds to a normal neurologic examination and 10 to death due to MS (Guimarães & Sá, 2014).This scale gives more importance to motor functions than to some neuropsychological deficits.The perception of QOL of the sample was assessed through the application of an instrument validated in Portugal -World Health Organization Quality Of Life-Bref (WHOQOL-Bref), which is an abbreviated version of the WHO-QOL-100 (The WHOQOL Group, 1998).It is a generic, multidimensional, and multicultural scale for a subjective assessment of QoL, and it can be used in a wide spectrum of psychological and physical disorders, as well as in healthy individuals.It consists of 26 items divided into the following QoL domains: Physical, Psychological, Social Relationships, and Environment, and the indicator overall QoL and general health.With regard to the coefficient of internal consistency of this study, we tested the reliability of Cronbach's alpha for the total scale items and obtained a very good value of .912.We used descriptive and analytical statistics for data analysis.Data were processed using the Statistical Package for the Social Sciences (SPSS), version 19.0, with the application of the test for analysis of variance (ANOVA).We used the following significance values for statistical analysis: p < .05-statistically significant difference; p < .001-highly statistically significant difference; and p = .05-statistically non-significant difference.

Results
Table 1 shows the data on the sociodemographic characteristics of the sample.It shows that the mean age of people with MS was 41 years.The sample was composed of 64% of women and 36% of men.We found that 72% were married or living as married, 20% were single, and 8% were divorced/separated/widowed; 96% lived with someone (with the spouse, other relative or friends), and only 4% lived alone.With regard to the level of education 42% of people with MS had the basic education, 16% had secondary education, and 42% had vocational higher education/higher education.In this sample, 60% of people with MS were employed, 14% were unemployed, and 26% were retired/disabled or on medical leave.

Quality of life of people with multiple sclerosis and their caregivers
With regard to caregivers, data shows that 52% were women and 48% were men, and that their mean age was 44 years.With regard to marital status, 84% were married or living as married, 12% were single, and only 4% were divorced/ separated/widowed.In the sample, 98% of caregivers lived with someone and only 2% lived alone.As regards the level of education, 54% of caregivers had basic education, 18% had secondary education, and 28% had vocational higher education/higher education.With regard to the professional situation, 60% of caregivers were employed, 22% were unemployed, and 18% were retired/disabled or on medical leave.
With regard to the clinical characterization of people with MS shown in Table 2, we found that, in terms of symptoms, most people had fatigue and some had loss of balance and difficulty in coordinating movements, urinary alterations, emotional alterations, spasticity, pain, and visual and cognitive alterations.Very few people with MS reported sensory, bowel, swallowing, and sexual alterations, and tremor.With regard to the MS clinical form, 80% had relapsing-remitting MS, 14% had sec-ondary-progressive MS, and only 6% had primary-progressive MS.In relation to the time elapsed since disease diagnosis, 62% of people with MS were diagnosed for less than 10 years, and 58% reported no outbreaks in the past 12 months.As to the level of disability, 70% had an EDSS < 3.5, which corresponds to a moderate disability.It was not possible to assess this item in two participants; however, the mean EDSS score was 1.50.With regard to the QoL of caregivers according to gender (Figure 4), we found that men and women have different perceptions of QoL, and that men have a better mean perception of QoL in all domains, except for social relationships.
We compared the QoL of people with MS and the QoL of their caregivers (Figure 5) and concluded that people with MS had worse QoL than caregivers in the overall QoL and general health, Physical and Psychological domains.We found a statistically significant difference in the overall QoL and general health (p = .039),Physical (p = .001),and Environment (p = .012)domains, with a significance level set at 5%.

Discussion
The analysis of the sociodemographic characterization of the sample confirms the higher incidence of MS in women and young adults, which is in line with Guimarães and Sá (2014).Most people with MS are married or living as married and also live with someone.In this context, we found that these people's support network is their nuclear family.Data also show that most people with MS have the 12 th grade or more, which implies that they are better informed and can better adapt to the disease.2007) found a percentage of 58.4%.We believe that these different results, when compared to our study, may be explained by the geographical location, culture, and characteristics of the population.
Today, although men are increasingly likely to care for their wives (Baker & Robertson as cited in Lee, DeDios, Fong, Simonette, & Lee, 2013), women continue to be the main caregivers of children, parents, elderly, and family members with chronic diseases (Cancian & Oliker; Helgeson, as cited in Lee et al., 2013).With regard to the caregivers' age, our ample also consisted of young adults in productive age.
The majority of caregivers were married or living as married, lived with someone, and their support network was their nuclear family.According to Buchanan and Huang (2011) and Kouzoupis et al. (2010) caregivers are often family members, spouses, partners, or parents.As we did not include kinship in the questionnaire, we are unaware of the caregivers' family relationship with the person with MS.These results show that caregivers can be not only spouses, but also women from within the family or not (mother, sister, daughter, daughter-in-law, friend, neighbor, etc.).
With regard to the level of education, the results show that caregivers have a higher level of edu-cation than people with MS.The data obtained regarding the caregivers' professional situation show that they are professionally active.
As to the clinical profile of people with MS, it should be emphasized that, at the time of questionnaire completion, each person reported one or more symptoms, and that the differences in each one of them depend on the injury area and location.Most people with MS have a relapsing-remitting MS, which is in agreement with Guimarães and Sá (2014), and were diagnosed with MS for less than 10 years.
The majority of people with MS reported no outbreaks in the past 12 months.This allows us to conclude that the disease is not very active, that there is adherence to the treatment, and that treatment is effective.The fact that one of the exclusion criteria was experiencing an outbreak may have led to these results.Most participants have moderate disability (EDSS < = 3.5), demonstrating the effect of treatment on delaying disease progression.The data obtained reveal a sample with moderate disability and a short time elapsed since disease diagnosis.These data are corroborated by Guimarães and Sá (2014) who mention that disability increases as the duration of the disease increases.Most patients are treated with interferon-beta, which is the first-line therapy for relapsing-remitting MS.The effectiveness of different firstline treatments is superposable, reduces the rate and severity of outbreaks, reduces the number of active injuries, and slows down the progression of disability (Guimarães & Sá, 2014).The majority of participants self-administer injectable medication, which confirms the existence of therapeutic adherence.
The results of this study show that the QoL of people with MS is perceived differently depending on gender.Women with MS have a better QoL than men, except in the Environment domain.This aspect is corroborated by Casetta et al. (2009) who reported that women adapt better to the disease since they seem to be more resilient, less vulnerable, and cope better with the disability.In a society where efficiency and productivity are highly valued, physical disability may represent a failure, which is a greater problem for men than for women with MS (Casetta et al., 2009).We found that caregivers perceive QoL differently according to gender.Men have a better QoL in all domains, except in Social Relationships.Some studies, particularly those of Patti et al. (2017) and Rivera-Navarro et al. (2009) found evidence that female caregivers have a worse QoL.According to Patti et al. (2007), gender is an important factor in QoL differences between the people with MS and caregivers.Patti et al. (2007) found that female caregivers, particularly spouses, had higher levels of physical distress and psychological morbidity than male caregivers.ta, 2013).Casetta et al. (2009) corroborates this finding in their study as they report that people with MS have worse QoL in all health-related QoL domains.Pedro (2010) found that the physical component is more affected, which is also emphasized in our results.In addition, Patti et al. (2007) mention that the disease and the progressive disability affect both the physical and the psychological performance.
In fact, people face a progressive and incurable disease that leaves physical and cognitive sequelae and that requires therapy (most often intravenous) to be controlled, with a negative impact on therapeutic adherence.These results are somewhat as expected, since those who suffer from the disease experience physical and psychological alterations and a progressive loss of autonomy, whereas caregivers have to help the patient to manage and adapt to a new life condition.Both the characteristics of the person with MS and those of the caregivers influence the caregivers' QoL but patients are the ones who really experience the disease.
Although caregivers have a better QoL in the overall QoL and general health, Physical and Psychological domains, people with MS have a better QoL in the Social Relationships, and Environment domains.This aspect can be explained by the fact that they have few years of disease evolution (62%), moderate disability (70%), mild cognitive deficit (10%), and the nuclear family as support.As such, they do not experience limitations in their social relationships and in the search for available resources.
The interpretation of the obtained results should take into account some limitations: the small sample size and the type of sample, which do not allow generalizing the results to the general population.

Conclusion
This study confirms that people with MS have worse QoL than their caregivers.The caregivers' key role in supporting and maintaining the functions of the person with MS is increasingly recognized.However, caregivers may have difficulties in their adaptation and transition to this new role, which has an impact on their QoL.
The study also shows that gender has an impact on the QoL of people with MS, with women having a better QoL.Among caregivers, men have a better QoL.
The results point to the importance of a continuous support and monitoring of people with MS and their family/caregivers.Both require the health professionals' support so as to minimize the risk factors that jeopardize the family dynamics.This support consists of clarification and transmission of quality information about the nature and evolution of the disease, management of signs and symptoms, identification of signs of physical and emotional exhaustion, and promotion of the acquisition of coping and adaptation strategies, thus improving the QoL of these people.We believe that health professionals, namely nurses, should take into account these differences in planning their activities in order to improve care delivery and the QoL of these people.From this perspective, the nursing consultation is clearly a privileged means of action to improve the QoL of people with MS and their family/ caregivers.In addition, nurses' specialized training in nursing care to people with MS and the recognition of their skills would be essential to support these people throughout their disease and contribute to its improved management.We recognize the need to replicate this study in other Portuguese institutions, particularly regarding caregivers' QoL, with the purpose of identifying and comparing the reality of those who care for people with MS and adjusting clinical practice to each context.

Figure 1 and
Figure 1 and Table 3 show data on the QoL of people with MS.People with MS have a higher mean QoL score in the Social Relationships (70.49) and Psychological (64.93) domains; a moderate QoL score in the Environment (64.45) and the overall QoL and general health (55.99) domains; and a lower mean QoL score in the Physical domain (53.57).

Figure 1 .
Figure 1.Mean scores of the WHOQOL-Bref domains in people with MS.

Figure 2 .
Figure 2. Mean scores of the WHOQOL-Bref domains in people with MS according to gender.

Figure 3 .
Figure 3. Mean scores of the WHOQOL-Bref domains in caregivers of people with MS.

Figure 4 .
Figure 4. Means of the WHOQOL-Bref domains in caregivers of people with MS according to gender.

Figure 5 .
Figure 5.Comparison of the mean scores of the WHOQOL-Bref domains in people with MS and their caregivers.

Table 1
Sociodemographic characterization of people with MS and their caregivers Quality of life of people with multiple sclerosis and their caregivers

Table 3
Mean score and standard deviation of the WHOQOL-Bref domains in people with MS Quality of life of people with multiple sclerosis and their caregivers

Table 4
Mean score and standard deviation of the WHOQOL-Bref domains in caregivers of people with MS