Do people with multiple sclerosis in Saudi Arabia want to know their prognosis? A cross-sectional nationwide study

An autoimmune neurological condition of the central nervous system (CNS), multiple sclerosis (MS) can worsen over time. The prevalence of MS is rising globally, in part because of increased incidence and in part because of earlier diagnosis and longer survival times. In young people, multiple sclerosis is a more frequent source of neurological symptoms.^1,2 Although the precise process of MS development is unclear, some people think it is brought on by an autoimmune attack on the central nervous system’s white matter, carried out by T-cell activation. There is also growing evidence that B cells and the innate immune system play a significant part in this attack. The complex interaction between hereditary and environmental factors is thought to be the origin of an autoimmune reaction.

The myelin sheath, an insulating coating that envelops neurones to enhance action potential conduction, can become destroyed, leading to demyelination. This is the main pathogenic feature of multiple sclerosis. But demyelination by itself cannot explain the deficiencies and impairments seen in people with MS (pwMS). Axonal injury, not demyelination, is the primary cause of clinical deficits in multiple sclerosis, according to a recent study, and myelin degradation alone is not enough to produce the whole spectrum of symptoms.³

The main diagnostic method for multiple sclerosis is clinical suspicion. To satisfy these requirements, clinical and imaging evidence must be used to demonstrate dissemination throughout time and space. The criteria make it clear that there should be no other explanation for a patient’s presentation.⁴

In 2014, the MS phenotypic group’s recommendations were presented after reviewing the clinical presentation, course, and progression of the disease. Clinically isolated syndrome, relapsing-remitting MS (RRMS), primary progressive MS (PPMS), and secondary progressive MS (SPMS)⁵ are among the current phenotypes of MS. Determining the prognosis of multiple sclerosis is challenging, because its usual course is unpredictable. The clinical course of pwMS determines the prognosis, which is bad and unknown for progressive phenotypes and favorable but uncertain for relapsing-remitting phenotypes.⁶

Communication between doctors and patients is made ambiguous and difficult by differences in the prognosis of diseases. Clinical guidelines like the National Institute of Clinical Excellence⁷ emphasize the value of open, sincere communication and providing pwMS with information. There are, however, no guidelines for communicating a patient’s prognosis or the uncertainty around the course of their illness.

Physicians communicate in a broad variety of ways. Before determining whether, when, and how to provide expectations and prognostications in an individualized manner, each doctor tries to make a clinical judgment based on their own experience with patients. This is the reason for this diversity. The PwMS reacts differentially to uncertainty and prognostic information. Therefore, doctors should carefully consider if, how, and when to inform patients about their prognosis.⁸

Only a small percentage of pwMS receive proper counseling, according to research, and their reactions to prognostic information vary.⁹ Although 76% of patients in UK research said they would rather talk about their long-term prognosis, Argentina also showed comparable preferences.^10,11 There is a knowledge gap on the demands and desires of pwMS about their prognosis, nevertheless, no research has been conducted in Saudi Arabia that addresses this topic. Using a self-administered online questionnaire, this study seeks to determine whether pwMS in Saudi Arabia want to talk about their long-term prognosis (LTP) and the factors impacting this desire. The results will fill important research gaps by demonstrating the level of patient interest in LTP conversations and their desire for prognostic tools.

The results of the study show that while over half of the participants were interested in learning more about their LTP, only about one-third of them had a productive conversation regarding LTP with their treating neurologists during follow-up appointments. A lot of patients want to know about the prognostic tools that are available

Methods

In order to ascertain whether pwMS in Saudi Arabia were interested in discussing their LTP, assess patients’ attitudes towards prognosis forecasting tools, and investigate whether clinical and demographic factors are linked to and predict LTP, a self-administered online questionnaire was distributed as part of this cross-sectional study.

A comprehensive assessment of the literature was carried out to find previous studies that were relevant to the prognosis of MS and the communication preferences of patients. Specific keywords, such as “multiple sclerosis prognosis,” “patient preferences,” “prognostic information,” and “communication in MS,” were used to search databases like PubMed, Google Scholar, and Scopus. In order to guarantee relevance and recentness, the search was restricted to English-language publications from 2010 to 2024.

To find more pertinent material, the reference lists of important research were also examined. Empirical research, reviews, and guidelines that addressed prognostic communication and patient involvement in MS care were the main emphasis of the inclusion criteria. In the end, this thorough search approach produced a variety of research that filled in knowledge gaps in the literature, especially in the Saudi Arabian setting, and contributed to the current understanding of patient attitudes towards prognostic conversations.

Raosoft was used to calculate the sample size, with a 5% margin of error, 95% was used as the confidence interval. There were roughly 14,500 patients in the population, and 50% of them responded; 375 people made up the total sample size. The non-probability convenience sampling technique served as the foundation for the study, in which patients with an MS diagnosis received online questionnaires through MS organizations and outlets.

All Saudi Arabian MS patients over the age of 18 who were male or female were included in this study. Following the completion of informed consent, participants were requested to complete an electronic questionnaire that they may complete on their own. There were two sections in the questionnaire. Sociodemographic information, the number of years since MS diagnosis, the number of years since MS symptoms began, and the type of MS (RRMS, SPMS, PPMS) were all included in the first section. Seventeen MS questionnaire items (PIMS study, MS patients’ attitudes towards prognosis communication, and their understanding of the condition) in the second portion dealt with prognosis.¹¹

Two bilingual translators who speak Arabic as their first language translated the questionnaire from English into Arabic. The questionnaire was modified during a pilot test. Patients whose surveys were not completed were not included. Three qualified specialists created the questionnaire and double-checked its content validity. They evaluated the items for completeness, relevance, content coverage, and question clarity (content validity). The necessary adjustments were made.

Statistical Package for Social Sciences version 25 was used to enter and code the data for analysis. Descriptive statistics are used to display data like percentages and frequencies. Both ordinal and nominal variables are shown as percentages and numbers. Means and standard deviations are used to display interval and ratio variables. The association between certain demographic factors and patients’ wish to be informed about the LTP estimation tool was evaluated using the chi-square test. The mean period of diagnosis, duration of symptom onset, and patients’ desire to be told about the LTP estimation technique were compared using an independent sample t-test. A significance threshold of p<0.05 was established.

The study followed the Helsinki Declaration’s guidelines for medical research involving human beings in order to maintain ethical compliance. Participants were made aware of the goal of the study, and patient confidentiality was guaranteed. The study was approved by the King Abdullah International Research Centre (approval number IRB/2328/22). To ensure anonymity, codes were allocated to the questionnaires, and each questionnaire’s results were kept private to safeguard the privacy of the participants.

Results

The purpose of the cross-sectional study design was to determine whether MS patients were interested in talking about their long-term prognosis. In order to determine if clinical and demographic characteristics are linked to and predict long-term prognosis communication preference, it is necessary to assess patients’ views towards prognosis forecasting methods. To determine if Saudi Arabian MS patients would like to talk about their long-term prognosis and the reasons influencing their choice, a self-administered online questionnaire was utilized.

The sample’s sociodemographic features are displayed in Table 1. The sample’s average age was 33.99 (±8.87 years old). Only 3.7% of the sample were under the age of 20 years, whereas over one-third (43.2%) were between the ages of 31 and 40 years. Men made up more than one-third (36.5%) of the sample, while women made up almost two-thirds (63.5%). In terms of education, nearly three-quarters (71.5%) of the sample finished their undergraduate or graduate studies. Married people made up more than half of the sample (57.1%). Ninety-four percent of the sample were Saudi nationals. Central region accounted for 43% of the total. Nearly half of the sample (47.5%) were employed or self-employed.

The sample’s MS history is displayed in in Table 2. In terms of MS type, RRMS type was present in more than two thirds (71.7%). However, just 13.1% had SPMS. 39.2%, or more than one-third, had a diagnosis within five years. The diagnosis took an average of 8.59 (±6.50 years). In terms of how long symptoms started to appear, the average was 9.61 (±6.62 years). Nearly the same proportion of the participants in the study reported experiencing symptoms between the ages of 6 and 10 or 11 and 20 years prior (32% and 32.5%, in that order).

The frequency distribution of MS long-term prognosis as stated by the sample’s participants is displayed in Table 3. Over two-thirds of the participants in the study (68.3%) stated that they had never been told about their long-term prognosis when they saw a neurologist. The long-term prognosis was discussed by the neurologist in 22.9% of the participants. 23.5% of the sample’s participants said that different neurologists conveyed different meanings. About two-thirds of the sample’s participants (66.1%) said they were unsure of their long-term prognosis.

Over half of the sample participants (61.6%) stated that they are currently interested in learning their long-term prognosis. Approximately two-thirds (66.4%) wanted to know their long-term prognosis because it will influence their health decisions, 53.9% so they can make decisions about their jobs, and 43.3% so they may draft their will. Because the individuals may choose more than one response, the percentages in this variable are not exclusive.

The attitudes of MS patients regarding prognosis forecasting techniques are displayed in Table 4. Most of the participants (85.5%) said they prefer to be notified when the tool is available during a clinic visit. Additionally, most (81.6%) said they would prefer to receive the predictive tool at the time of diagnosis.

Table 5 illustrates the relationship between certain demographic factors and the patient’s desire to learn about instruments for predicting long-term prognosis. The age and education level of MS patients were statistically significantly correlated with their desire to learn about a tool for assessing long-term prognosis (p<0.001).

Additionally, the desire to learn about instruments was statistically significantly associated with gender (p=0.02). A higher percentage of women (65.7%) expressed interest in being informed about the instrument compared to 34.3% of men.

The mean time between diagnosis and symptom onset, as well as the patient’s wish to learn about methods for predicting long-term prognosis, are compared in Table 6. The mean length of the illness, the mean onset of its symptoms, and their wish to learn about a tool for predicting long-term prognosis did not differ statistically significantly (p=0.360 and p=0.239, respectively).

Discussion

Given the wide range in how the disease progresses, prognostic counseling for MS is difficult. For patients and neurologists, who are in charge of creating a treatment plan for the illness in its early stages, this poses a problem.¹² To optimize the balance between therapeutic benefits and potential hazards, treatment planning is insufficient if individual prognostic risks are not taken into account.^12,13 Thus, it is essential to comprehend the prognostic aspects of pwMS. The current study offers fresh perspectives on the LTP preferences and experiences of pwMS in Saudi Arabia.

According to the results of the study, 68.3% of the subjects never discussed LTP with their neurologists at their planned visits. Dennison et al found that 51.3% of participants in the UK did not discuss their LTP with their neurologists, which is in line with our findings. Nonetheless, research conducted in Argentina found that a comparatively smaller percentage of individuals (21.5%) had never spoken to their neurologists about LTP 15.

According to the majority of study participants (66.1%), they do not fully comprehend LTP. 50% and 54.2% of participants in the cross-sectional research carried out in Argentina and the UK, respectively, lacked clarification regarding LTP.¹⁴ Few participants talked to their neurologists about their prognosis outcomes, which may account for the dearth of information on LTP. Additionally, pwMS knowledge of disease processes, therapies, and prognostic variables is below ideal, according to previous Saudi studies.¹⁵ Since the emphasis is on communicating the diagnosis to patients, there aren’t many studies on communication and information preferences surrounding LTP in MS.¹⁶

According to our results, the majority of participants (66.4%) were eager to find out what their LTP was Similar findings were seen in a UK study where the majority of participants said that LTP knowledge would assist them in making decisions, mostly about treatment (71.2%), end-of-life care (78.3%), and money (77.8%).¹¹ A German study revealed similar findings: 66% of pwMS wanted the end-of-life issues to be discussed during their neurology sessions, and 76% of them thought it was important to talk about the disease’s development.¹⁷

Several variables contribute to pwMS’s desire for a better prognosis. Being aware of the prognosis can enable people to take an active role in choosing their course of therapy. Additionally, individuals can behave appropriately by understanding the possible path of their illness. Furthermore, patients who are aware of their prognosis are better able to plan for the future on both a personal and professional level and establish reasonable expectations. According to earlier research, neurologists do not provide pwMS with enough LTP information when they diagnose them with.⁸ Giving pwMS prognostic information necessitates a balanced strategy. As a result, Saudi Arabian professionals ought to receive training on how to discuss patients’ long-term health concerns.

When choosing a treatment plan for pwMS, it is critical to take individual prognostic factors into account. Individual risks can be estimated using tools like the Evidence-Based Decision Support Tool in Multiple Sclerosis and online analytical processing, which are based on searches in sub databases that include matching individuals.¹⁸ A prognosis tool should be offered, according to 81.6% of participants in the current study, and 85.5% of participants said they would prefer to be informed about the tool’s availability during a clinical consultation.

These results are comparable to those of national cross-sectional studies carried out in Argentina and the United Kingdom. According to this research, the majority of participants (98.9% and 94.3%, respectively) expressed interest in using the tool for their individual LTP estimates.¹² Since participants were not shown any such tool throughout the survey, the question about using the tool for LTP was purely hypothetical. Such surveys will be necessary for future studies on these instruments.

According to a prior study,¹⁹ the LTP tool should be beneficial at various moments in time and aid in decision-making. According to the current survey, 61.6% of individuals said they were very interested in learning about their LTP at that particular moment. Our results are comparable to those of a UK study where 68.5% of participants were asked about their LTP at diagnosis, 76.0% during the survey, and 79.3% after the fact.¹¹

There were multiple restrictions on this study. Since this study was cross-sectional, we were unable to assess changes over time in order to determine the underlying causes. Another significant drawback of this study in comparison to a study carried out in the UK was its small sample size.¹¹ Only 375 of the 14,500 patients took the survey. The reason for this poor reaction could be that patients were either uninterested in this issue or reluctant to discuss their LTP because of stress or fear.

Given that the patients who answered this survey are interested in learning more about their LTP, bias may be present. Additionally, mood problems such anxiety, depression, and cognitive impairment were not assessed in this study. To our knowledge, this study represent an initial report into preferences of Saudi Arabian multiple sclerosis patients regarding information and communication about LTP. Overall, the results of our study show interest in LTP. As a result, healthcare providers ought to communicate with pwMS about LTP more effectively.

To sum up, this study evaluated pwMS’s present understanding of the illness and investigated their interest in their LTP. Only around one-third of the individuals had an ideal conversation with their treating neurologists at follow-up visits, even though over half of them expressed interest in learning more about their LTP. Many of the participants also said that they would like to know more about the prognostic tools that are currently available. To evaluate the current patient data on their prognosis and communication deficiencies with their doctors, more research should be carried out both domestically and internationally.