ABSTRACT
The quality of life (QOL) of people with multiple sclerosis (MS) is considerably poorer than the QOL of people with other chronic diseases. QOL management should not be restricted to only clinical aspects but also factors modifying QOL. The aim of this study was to identify the sociodemographic and clinical determinants of QOL in people with MS.
A cross-sectional study conducted from 2022 to 2023 included 200 participants aged 18 and over recruited from the Hassan II University Medical Hospital in Fez, Morocco. QOL assessment was performed using the Arabic version of the Multiple Sclerosis Quality of Life-54 (MSQOL-54) questionnaire. Univariate analysis using Student t test, analysis of variance, and Pearson correlation was performed, followed by multiple linear regression analysis to determine the main factors associated with QOL.
QOL was impaired in the physical health (PH) (48.51±22.08) and mental health (MH) (48.69±17.18) components of the MSQOL-54. Male sex, unemployment, and high scores on the Expanded Disability Status Scale (EDSS) were factors significantly associated with lower scores on both the PH and MH components. In contrast, later age at MS diagnosis and older age were significantly associated with worse PH and MH, respectively. EDSS score was a strong predictor of QOL (PH: β = −34.983; 95% CI, −39.64 to −30.31; MH: β = −23.383; 95% CI, −27.62 to −19.14).
The results highlight the importance of sociodemographic and clinical determinants of QOL. Clinicians need to integrate a biopsychosocial approach into therapeutic education programs, considering the risk factors and specific needs of people with MS to optimize their QOL.
Multiple sclerosis (MS) is a neurodegenerative, demyelinating disease of the central nervous system,1 arising from the interplay between genetic predisposition and environmental factors.2 According to a report by the Multiple Sclerosis International Federation, approximately 2.8 million individuals worldwide are impacted by the disease.3 It is diagnosed in young people, typically between the ages of 20 and 40 years, with a higher prevalence in women. However, the diagnosis sometimes occurs later in life, even if initial symptoms may have appeared earlier.1 MS causes severe neurological disability.4 The unpredictability and variability of MS symptoms give it a complex pathology, including ataxia, cognitive disorders, visual and sensory impairments, fatigue, sexual dysfunction, and bladder and bowel dysfunction.1,2 Psychological well-being is also impacted by a high prevalence of depressive disorders and anxiety.5 As the disease progresses, worsening episodes may leave persistent symptoms, leading to increased physical limitations and significant repercussions. These include psychological impacts such as reduced self-esteem,6 economic challenges like higher medical expenses and job loss,7 and social difficulties such as trouble maintaining personal relationships and participating in daily activities.8 As a result, the quality of life (QOL) of people with MS is significantly affected, even at early stages.9 Moreover, it is perceived to be worse than that observed in other chronic pathologies such as inflammatory bowel disease, rheumatoid arthritis,10 diabetes, and epilepsy.11 Research has therefore recently focused on QOL as a key outcome indicator12 as a benchmark in the evaluation of treatment efficacy and the planning and management of MS care.13
QOL is a comprehensive concept consisting of physical, social, psychological, and functional aspects.14 Many tools are used to measure QOL, but, due to its multidimensional and hybrid nature, the Multiple Sclerosis Quality of Life-54 (MSQOL-54) questionnaire is one of the instruments most commonly used to measure MS-specific QOL.15,16 MS-specific instruments provide more comprehensive and accurate assessment of the impact MS has on health and QOL than generic instruments.17,18
Deterioration in QOL can be interpreted as a marker of disease progression,19 but may ultimately be hard to discern given that its many individual factors make it more difficult to measure, altering the reliability of QOL results.14,20 As sociodemographic and clinical components affect QOL for people with MS, we can anticipate variations in its determinants in different countries due to social, cultural, economic, and health care system divergences.21 Thus, understanding the factors that influence MS QOL will uncover certain associations between individual patient characteristics and its various aspects. This will help health care professionals optimize the decision-making process when choosing effective interventions by assessing whether further action is required,22 thereby improving their management of MS.12,23 The aim of this study was to identify the sociodemographic and clinical determinants of QOL in Moroccan people with MS.
METHODS
Study and Population
This cross-sectional study was conducted over a 6-month period from October 2022 to April 2023. Recruited patients were followed by the neurology department of the University Medical Hospital Hassan II in Fez, Morocco, and were contacted either during their outpatient hospitalization or in consultation. Via consecutive sampling, we included a total of 200 patients who fulfilled the following inclusion criteria: (1) aged 18 years or older, (2) confirmed diagnosis of MS based on the revised McDonald criteria (2011),24 (3) an Expanded Disability Status Scale (EDSS)25 score between 0 and 8, and (4) no exacerbations recorded in at least the previous 4 weeks. Exclusion criteria included patients with a questionable diagnosis of MS, with pronounced cognitive and psychiatric disorders, and with concomitant diseases likely to interfere with QOL.
Ethical Considerations
After obtaining approval from the Ethics Committee of the Faculty of Medicine, Pharmacy and Dentistry at Sidi Mohamed Ben Abdellah University in Fez (Registration No. 31/22), all participants were provided with pertinent details regarding the study and willingly provided their written informed consent, in accordance with the Declaration of Helsinki.
Data Collection
Data were obtained through the use of a preestablished questionnaire, including sociodemographic and clinical data. Sociodemographic variables included sex, age (categorized as ≥40 and < 40), area of residence (categorized as urban or rural), occupational status (grouped as active or inactive), level of education (illiterate, primary, secondary, or university), and marital status (single, married, widowed, or divorced). Clinical variables included associated comorbidities, family history of MS, age at diagnosis, duration of disease course, form of MS (relapsing-remitting [RR], secondary progressive, or primary progressive),2 current treatment (first-line treatment [ie, interferon beta, teriflunomide, azathioprine] second-line treatment [ie, natalizumab, fingolimod, ocrelizumab, rituximab], or third-line treatment26 ), and EDSS score (low [≤ 3.5] or moderate to high [≥ 4]). All these data were collected via self-report and the medical record of each participant.
Measure of Quality of Life
Data on QOL were collected using the validated Arabic version of the MSQOL-54 questionnaire, specifically adapted for the Moroccan context.27 The Cronbach coefficient for this version varied between 0.69 and 0.92, with 100% success in both convergence and divergent validity.27 This is a commonly used and standardized questionnaire16 of 54 items, with 18 items designed specifically for MS. It contains 12 subscales, 2 single-item measures related to satisfaction with sexual function and change in health status, and 2 composite scores related to physical health (PH) and mental health (MH).16 The subscales are physical function, pain, role-physical limitations, health perception, energy/fatigue, cognitive function, sexual function, role-emotional limitations, health-related distress, social function, emotional well-being, and global QOL.16 Each question is scored from 0 to 100, and a score was assigned for each subscale. Scores closer to 100 indicate higher QOL.
Data Analysis and Statistical Methods
To describe and synthesize the sociodemographic and clinical variables, as well as the MSQOL-54 scores, a descriptive statistical analysis was conducted of mean and SD for quantitative variables and frequency and percentage for categorical variables. A univariate analysis was performed to study the association between variables and PH and MH MSQOL-54 scores, including a Student t test and analysis of variance for the independent variables (ie, age, sex, marital status, area of residence, level of education, occupational status, associated comorbidities, family history of MS, form of disease, and type of current treatment), and a Pearson test for quantitative variables (eg, EDSS score, age at diagnosis, duration of disease). For all conducted tests, a P value less than .05 was considered significant. Multivariate analysis using multiple linear regression (with a stepwise procedure) was performed to determine the determinants of QOL in Moroccan people with MS. Factors with a P value less than or equal to .25 in the univariate analysis were considered for inclusion in the models. Significant associations were indicated through the adjusted β coefficient and 95% CI. Independent variables with a higher absolute value of β are those with a more marked influence on QOL. All statistical analyses were conducted utilizing IBM’s SPSS version 26.0.
RESULTS
Sociodemographic and clinical characteristics are presented in TABLE 1. Of the total of 200 patients, 74.0% were women, 71.5% were under 40 years of age, 56.5% were married, and 79.0% lived in an urban area. The majority of patients (63%) were unemployed, and 33% had attended university. In terms of clinical data, the RR form of MS was the most frequent subtype (90.5%). The mean age at diagnosis was 33.28 ± 10.71 years (range, 13-67 years). Mean disease duration in months was 67.62 ± 64.87; 77.5% had an EDSS less than or equal to 3.5; 84% were receiving second-line treatment. Mean PH and MH scores were 48.51 ± 22.08 and 48.69 ± 17.18, respectively. Of all MSQOL-54 dimensions, participants had the highest mean scores for physical function (58.33 ± 34.60) and the lowest mean scores for sexual function (36.02 ± 31.93) (TABLE 2).
Univariate Analysis
The results of the analysis indicate that low PH and MH scores were significantly associated with certain sociodemographic variables, including advanced age (P = .0001), male sex (P = .001 for PH, P = .013 for MH), absence of a professional activity (P = .0001), low level of education (P = .001), and rural residence (P = .009 for PH, P = .012 for MH). Decreases in PH and MH scores were negatively associated with certain clinical factors, including a higher EDSS score (P = .001) and advanced age at MS diagnosis (PH: r = −0.257; MH: r = −0.235; P = .0001). Increased disease duration was negatively correlated with low PH (r = −0.138, P = .05); however, its influence on MH was not statistically significant. First-line treatment appeared to have a significant influence on PH compared with second-line treatment (P = .002), but there was no significant difference in MH. Form of MS also showed a significant association for both PH and MH (P = .0001), with higher results noted for RR, indicating better QOL. Finally, marital status, comorbid conditions, and family history of MS were not significantly associated with QOL (TABLE S1).
Multivariate Multiple Regression Analyses
Final models were established after performing a manual multiple linear regression analysis, carefully integrating relevant sociodemographic and clinical factors. Results indicated that the factors negatively associated with PH and MH were: male gender (PH: β = −9.969; 95% CI, −14.43 to −5.50/MH: β= −5.760; 95% CI, −9.80 to −1.71), unemployment (PH: β = −8.515; 95% CI, −12.79 to −4.23/MH: β= −8.236; 95% CI, −12.09 to −4.37), and as high EDSS scores (PH: β = −34.983; 95% CI, −39.64 to −30.31/MH: β = −23.383;95% CI, −27.62 to −19.14). Moreover, advanced age was associated with low MH (β = −4.924; 95% CI, −8.79 to −1.05), whereas late age at diagnosis contributed to worsened PH (β = −0.317; 95% CI, −0.496 to −0.137). EDSS score was found to be the strongest predictor of QOL for people with MS in our study (TABLE S2).
DISCUSSION
The main aim of this study was to identify the sociodemographic and clinical determinants of QOL in Moroccan people with MS. Our results revealed that the QOL was impaired for PH and MH, aligning with the results of several previous studies.19,21,28–30 Furthermore, significant impairments in both PH and MH were associated with male gender, unemployment, and a high EDSS score. Late age at diagnosis and advanced age were also significantly associated with lower PH and MH scores, respectively. Finally, EDSS score was found to be a strong predictor of QOL.
After a univariate analysis, the factors influencing PH are multiple. Indeed, an exclusively negative correlation was demonstrated between disease duration and PH, with no significant impact on MH. Some studies have also noted that the longer the duration of illness, the more physical QOL decreases,31,32 making disease duration a risk factor for decreasing QOL.33,34 In general, although physical function may decline with the progression of chronic diseases, MH may still remain favorable.35 For current treatment, a significant association was observed with PH, indicating higher scores for first-line treatment. Other studies have shown that first-line treatment of MS was linked to improved QOL in patients with both pediatric and adult onset.36 In contrast, receiving treatment for MS was associated with a lower PH score.23 Although it is widely accepted that disease-modifying drugs impact QOL,37,38 the variations in study findings may be attributed to specific adverse effects associated with the range of drugs available.37 Furthermore, it is plausible that patients on first-line treatment experience a higher QOL, possibly due to reduced disease activity,39 compared with those receiving other treatments. In Morocco, between 70.4% and 89.6% of people with MS do not have access to disease-modifying treatments due to their high cost and the limitations of the health care system, which negatively impacts the management of their disease.40
In line with previous studies,41–43 our results showed that mean age at MS onset was in the 30s. After multivariate analysis, a later age at diagnosis was negatively correlated with deterioration in PH.41,42 However, few studies take this variable into account when assessing QOL. Our results could be linked, in part, to late diagnosis, which holds the opportunity for disease progression with a likelihood of increased disability over a shorter period. Late diagnosis could also limit the effectiveness of available treatment options.44 Those diagnosed at a younger age tend to have good PH and impaired MH42,45 and to display significantly more favorable scores in the domain of health status perception.46 Older age at disease onset in adults is also associated with lower QOL scores36 and poor physical and sexual function.41
Our results surprisingly indicate that advanced age had a significant negative impact, specifically on MH. However, the literature presents divergent findings, with some authors claiming that older age is associated with good MH,47–49 whereas others have confirmed that, unlike mental health, PH is generally marked by deterioration with age.32,46,50 Previous research also indicated that older people with MS have lower PH and MH scores than younger people with MS.37,51 Our results highlight the challenges in self-perceived acceptance that people with MS face as they age,52 where coping strategies and resilience act as significant mediators between mental QOL and sense of coherence.6,52
After univariate analysis, several factors influence both PH and MH. People living in urban areas had significantly higher PH and MH scores than those living in rural areas, which is supported by previous studies.41,53,54 This may be due to their greater access to specialists and other therapies. As a result, they are more likely to receive the assistance they need to overcome difficulties.48,55 In addition, higher levels of education were significantly associated with better PH and MH. More educated people with MS experience greater confidence and an enhanced ability to initiate treatment early, contributing to more effective management and strong adaptation to the physical and mental challenges involved.7,48 A higher level of education therefore acts as a protective factor against QOL deterioration, as it promotes a better understanding of the disease.33,34,56 Some studies indicate that patients with RRMS have better PH and MH scores.13,21,34 However, other studies have indicated that the type of MS has no bearing on QOL.48,50 One possible explanation is that the disease develops more rapidly in patients with progressive MS, leading to severe symptoms that may have a negative impact on QOL.14,31,57
Our results after adjustment highlighted that, as in other studies,23,29,50,58,59 a high EDSS score was a strong predictor of worse PH and MH in people with MS. QOL appeared to be strongly influenced by the number and severity of symptoms, as well as by associated impairments.56 A higher EDSS score is associated with high vulnerability, high dependence on others, role restrictions in daily life, and decreases in self-efficacy and mental health.50,60 The results of a study conducted in Morocco showed a notable association between the level of disability and PH and MH, and that incorporating psychological support into care programs was essential.61
After a multivariate analysis, male sex remained negatively associated with deterioration in PH and MH. This finding aligns with prior studies confirming that male sex was associated with unfavorable QOL in people with MS.62,63 Compared with women with MS, men with MS have poorer physical QOL31 and are generally faced with a worse prognosis than women.64 The impact of disability on QOL is more powerful in men than women, especially on physical function, social and mental health, and vitality.62 This may be explained by a finding that women are better able to develop coping mechanisms and capacities to adjust to MS-related disability, thus helping to reduce the impact on their QOL.62 Unemployment was also highlighted as a risk factor for deterioration in PH and MH, consistent with previous studies that have confirmed that unemployed people with MS generally have low QOL53,65,66 and tend to develop psychosocial problems.65,67 Participation in meaningful activities, including work, acts as a protective element against depression and QOL decline.14,68 Thus, employment is associated with positive mental well-being in people with MS67 and also with an increase in self-efficacy and self-esteem.65,69 Other authors, however, have highlighted that feelings of inadequacy can lead to withdrawal from employment. Even in the absence of a significant influence of the disease on functional status, people with MS may feel a functional incapacity when they compare their present state of health and function with what they had before the onset of the disease.7,70 In the Moroccan context, unemployed individuals face greater difficulties accessing appropriate care, which can exacerbate disease symptoms and affect their QOL.40
This study has a few limitations. First, caution should be exercised in interpreting our results due to the study’s cross-sectional design and the establishment of a causal relationship between QOL and the various identified factors. Second, we did not have the opportunity to involve additional participants due to the limited recruitment within the neurology department and issues related to access to disease-modifying therapies. These factors constrained our ability to establish significant associations with certain variables as well as to assess QOL based on this disease sub-type, particularly among people with RRMS, which was the most prevalent group in our sample. However, to our knowledge, this is the first study to cover a wide range of determinants of QOL in Moroccan people with MS, paving the way for a deeper understanding of the impacts on QOL in this population and for more in-depth future research to inform clinical management.
CONCLUSIONS
We found that MS had a negative impact on the physical and mental dimensions of QOL. The present study contributes to a deeper understanding of the interaction between sociodemographic and clinical determinants of QOL of people with MS in Morocco. Significant impairment of both PH and MH was associated with male sex, unemployment, and higher EDSS scores. In addition, late age at MS diagnosis and advanced age were significantly associated with low PH and low MH, respectively. EDSS score was found to be a powerful predictor of QOL. Recognition of these factors offers opportunities to organize healthcare proactively, enabling integrated management of MS. However, it also raises the importance of taking into account nonmodifiable factors and the specific needs of people with MS with a biopsychosocial approach and personalized therapeutic education programs. This includes psychological support, rehabilitation, and integration of QOL assessment into care protocols. The challenge is to guide patients, families, and clinicians toward optimal disease management.
Clinicians should take into account the sociodemographic and clinical risk factors associated with lower physical and mental quality of life (QOL) in people with multiple sclerosis and include these biopsychosocial aspects in routine, holistic care to optimize QOL.
ACKNOWLEDGMENTS:
We are grateful to all researchers whose articles were reviewed in the study.
REFERENCES
FINANCIAL DISCLOSURES: The authors have declared no conflicts of interest.