Abstract
Parkinson's disease (PD) is a chronic neurodegenerative disorder requiring informed decision making, especially regarding advanced treatments such as deep brain stimulation (DBS). However, patient knowledge and perceptions in low-resource settings like Morocco remain poorly understood. This study assessed PD patients’ knowledge and attitudes/perceptions toward DBS in Morocco. A cross-sectional study was conducted among PD patients in 5 cities in the Casablanca-Settat region. Data were collected using a 7-item PD knowledge tool and a DBS attitudes/perceptions questionnaire. A total of 370 patients were recruited, with a mean PD knowledge score of 4.5 out of 7, with higher scores linked to greater education. Only 31.9% had heard of DBS, and 39.4% were willing to undergo it if recommended. Willingness was higher among patients from the private sector, those with longer disease duration, and those at advanced stages. A common misconception was that DBS cures PD (25.9%). Barriers to DBS access included high cost, fear of surgery, lack of specialists, and insufficient information. Gaps in PD knowledge and misconceptions about DBS persist, highlighting the need for targeted educational initiatives in Morocco.
Introduction
Parkinson's disease (PD) is a progressive neurodegenerative disorder characterized by motor and non-motor symptoms, 1 impacting millions of individuals globally. Characterized by its multifaceted symptomatology, PD presents a considerable burden on patients, caregivers, and healthcare systems alike. 2 Knowledge about PD and its management is essential, as it empowers patients to recognize symptoms, make informed decisions, and adhere to treatment, and ultimately improve their quality of life.3,4
Among the available therapeutic interventions, deep brain stimulation (DBS) has emerged as a highly effective option for managing motor complications in advanced PD. The procedure involves the surgical implantation of electrodes into specific brain regions responsible for motor control, which are connected to an implanted pulse generator. Through the delivery of targeted electrical impulses, DBS modulates abnormal neural activity associated with the disease. A key advantage of DBS lies in its adjustability and reversibility, enabling clinicians to tailor stimulation settings to the evolving needs of patients. 5
Eligibility for DBS generally includes patients with advanced PD who experience disabling motor fluctuations or dyskinesias that are not adequately controlled by optimized pharmacological treatment. Candidates should demonstrate a robust and sustained response to levodopa, have no significant cognitive impairment or severe psychiatric disorders, and no contraindications to surgical intervention.6,7
In regions like North Africa, where healthcare resources may be limited and cultural perceptions of illness vary, 8 exploring patient knowledge and perspectives becomes imperative for delivering tailored and effective care. Patients and their families are often confronted with complex treatment decisions as PD progresses, 9 including the consideration of advanced therapies like DBS, which is currently the only available advanced treatment in Morocco and for which approximately 19% of PD patients are eligible. 10 However, the extent to which Moroccan patients are knowledgeable about PD and receptive to such advanced treatment remains largely unexplored.
This study aims to assess Moroccan patients’ general knowledge of PD as well as their attitudes and perceptions toward advanced treatment options, with a particular focus on DBS. Through this investigation, we aim to identify potential areas of improvement in patient education, as well as understand the factors that may influence patient acceptance or reluctance toward DBS as a treatment option.
Patients and Methods
Study Design, Settings, and Participants
This cross-sectional study was conducted over 9 months in the Casablanca-Settat region in Morocco, with participants selected from 15 public and private centers across 5 cities: Casablanca, Settat, El Jadida, Mohammedia, and Berrechid. A non-probabilistic clustering method was used, based on a comprehensive list of healthcare facilities providing PD care in these cities. We included patients diagnosed with PD based on the Movement Disorder Society clinical diagnostic criteria. 11
Data Collection and Study Variables
Demographic and Clinical Characteristics
Demographic variables included age, sex, place of residence (urban/rural), education level, health insurance status, and healthcare sector (public/private). These variables were self-reported by patients. Clinical data included age at PD onset, disease duration, comorbidities, the Charlson comorbidity index, and disease severity assessed using the Hoehn and Yahr scale. The presence of advanced PD was evaluated using the 5-2-1 criteria. 12 All assessments were performed by the attending neurologist with assistance from the investigator during the clinic visit.
The PD Knowledge Questionnaire
A newly developed 7-item PD knowledge questionnaire was used to assess participants’ understanding of the disease (Table S1). The questionnaire was designed based on a literature review and reviewed by local neurologists to ensure clinical accuracy and cultural relevance. It was developed in Moroccan dialect. It covered key aspects of PD, including the affected body system, underlying cause, common symptoms, curability, disease progression, symptom management, and the most affected age group. Each item was multiple-choice and scored as correct or incorrect, with total scores ranging from 0 to 7. The questionnaire was administered in person by investigators during routine visits and took approximately 10 to 15 min to complete. Assistance was provided as needed, including support from an accompanying person when present.
Validation of the knowledge questionnaire followed a 2-phase process. In the first phase, an initial 8-item version was submitted to 5 experienced local neurologists for content validation. Using the item-level and scale-level content validity index (I-CVI and S-CVI), the experts recommended the revision of 2 items and the removal of 1; the overall S-CVI was 0.78. The refined 7-item version was then pilot-tested among the first 18 PD patients in the sample. Internal consistency, assessed using the Kuder–Richardson Formula 20 (KR-20), yielded a coefficient of 0.91, indicating excellent reliability. Item difficulty indices ranged from 0.50 to 0.72, while point-biserial correlations ranged from 0.48 to 0.98, suggesting that the items demonstrated strong discriminatory capacity.
In the second phase, the final questionnaire was administered to the full sample of 370 PD patients. The KR-20 coefficient remained high at 0.88, confirming the internal consistency of the instrument. Item difficulties ranged from 0.61 to 0.70, and point-biserial correlations ranged from 0.74 to 0.79, reflecting stable and satisfactory item performance. Construct validity was further supported by a statistically significant difference in knowledge scores between patients with university-level education and those with only primary education (mean score: 4.94 vs 4.38; P = .003), demonstrating the instrument's ability to discriminate between groups with theoretically expected differences.
Attitudes and Perceptions Toward DBS
The second part of the survey evaluated patients’ attitudes and perceptions toward DBS using 8 items divided into 2 subdomains. The attitude domain consisted of 3 questions assessing personal attitude toward DBS: whether the patient had previously heard of DBS, their willingness to undergo the procedure if recommended by a physician, and their level of concern regarding its risks. The perception domain comprised of 5 questions exploring beliefs and expectations about DBS, including its perceived purpose, anticipated risks, accessibility in Morocco, perceived barriers to access, and overall personal impression of the intervention.
The I-CVI scores identified 3 perception items that required revision and 1 that was recommended for removal. The item concerning the patient's overall personal impression of DBS was recommended for removal due to its open-ended format and lower content relevance. The overall S-CVI/Ave based on expert review was 0.87, indicating strong content validity across the set.
Statistical Analysis
Data were analyzed using IBM SPSS version 21.0 and Jamovi version 4.3.1. Descriptive statistics, including means, standard deviations, were used to summarize continuous variables, while categorical variables were described using frequencies and percentages. Associations between categorical variables were assessed using the chi-square or Fisher's exact test. Comparisons of continuous variables were conducted using the Kruskal–Wallis or Mann–Whitney test given the nonnormal distribution of PD knowledge scores (Shapiro–Wilk P < .001). Spearman's correlation examined relationships between PD knowledge scores and continues clinical variables. A P value <.05 was considered statistically significant throughout all analyses.
Ethical Considerations
This study was approved by the local Ethics Committee on October 26, 2023 (Approval No. 06/2023). Written informed consent was obtained from all participants. To ensure confidentiality, personal identifiers were removed, and unique identification codes were assigned to each participant.
Results
A total of 370 individuals with PD were enrolled. The mean age was 65.1 years, and 50.5% were male. Only 30.5% had a high school education or higher. About 68% reported good health coverage, 55% had at least 1 comorbidity, and 9.2% had early-onset PD (before age 50). The mean disease duration was 6.8 years. Table 1 summarizes the demographic and clinical characteristics.
Demographics and Clinical Characteristics of the Study Sample.
SD, standard deviation.
Patients’ Knowledge About PD
The mean knowledge score was 4.5 ± 2.5 out of 7, with 37.3% (n = 138) scoring below 4. As shown in Table 2, the highest proportion of correct responses was for the item identifying older adults as the most affected population (70.0%), followed by the nervous system as the primarily affected system (68.4%), disease progression over time (64.9%), and the benefit of physical activity (64.3%). Approximately 61% correctly recognized tremor as a common symptom and brain chemical deficiency as the main cause of PD. In contrast, only 54.6% accurately stated that PD cannot be cured but symptoms can be managed. Misconceptions were common: 35.1% were uncertain or incorrect about curability, 17.6% considered complete rest beneficial, 8.9% believed smoking was helpful, and 12.4% thought all age groups were equally affected.
Knowledge of Parkinson's Disease Among Patients (7-Item Questionnaire).
Knowledge scores were significantly higher among participants with a high school education or above compared to those with lower educational levels (P = .003). No significant differences were observed across other demographic or clinical variables. Detailed comparisons are presented in Table 3. Furthermore, no significant correlations were found using Spearman's rank test between knowledge scores and age (P = .333), Hoehn and Yahr stage (P = .522), EuroQol Visual Analogue Scale (EQ VAS) score (P = .653), and disease duration (P = .123).
Comparison of the 7-item Parkinson’s Disease Knowledge Score With Demographic and Clinical Variables.
SD, standard deviation.
*Mann–Whitney U test, or Kruskal–Wallis test, as appropriate. A P value <.05 was considered statistically significant.
Attitude Toward DBS
Regarding awareness of DBS, 31.9% of participants reported having heard of the procedure, while 68.1% had not. In terms of willingness to undergo DBS if recommended by a physician, 39.4% of participants responded positively (scores 4 and 5), 38.7% expressed low willingness (scores 1 and 2), and 21.9% were neutral (score 3). Concerning the level of concern about DBS-related risks, 44.1% of participants reported moderate to high concern (scores 4 and 5), 29.5% reported low concern (scores 1 and 2), and 26.5% were neutral. Detailed results are presented in Table 4.
Attitudes and Perceptions Regarding Deep Brain Stimulation Among Patients With Parkinson's Disease.
Abbreviation: DBS, deep brain stimulation.
Prior awareness of DBS did not show significant associations with age group (P = .981), habitat (P = .770), age at onset (P = .637), healthcare sector (P = .823), comorbidity (P = .868), sex (P = .072), educational level (P = .344), insurance coverage (P = .268), or disease duration group (P = .379).
In contrast, willingness to try DBS showed significant associations with several factors. Patients from the private sector more frequently reported willing attitude (scores 3-4), while responses in the public sector were more evenly distributed (P = .028). Those with a disease duration of less than 5 years were more likely to report low willingness (scores 1-2), whereas longer durations (6-10 years and over 10 years) were associated with higher willingness (scores 3-5). PD stage was a strong determinant (P < .001); most patients with advanced PD reported high willingness (scores 4-5), while those with non-advanced PD were more often hesitant or opposed (scores 1-2) (P < .001). Willingness was also linked to perceived concern about DBS risks (P = .005); participants with moderate concern (scores 3-4) were more likely to express moderate to high willingness, while those at either extreme showed greater variability. Willingness was not significantly associated with age group (P = .492), place of residence (P = .507), age at onset (P = .733), comorbidity status (P = .551), sex (P = .986), educational level (P = .443), or insurance coverage (P = .945).
Level of concern regarding DBS risks showed a significant association with insurance status (P = .026). Patients with strong coverage were more likely to report moderate concern (scores 3-4), while those with weak coverage were slightly more represented at the extremes (scores 1 and 5). PD stage was strongly associated with concern levels (P < .001); patients with advanced PD more often reported lower concern (scores 1-3), while those with non-advanced PD reported higher concern (scores 4-5). A similar pattern was seen across Hoehn and Yahr stages (P = .031), with greater concern among patients in earlier stages (1-2) than in advanced stages (3-5). Although not statistically significant (P = .069), shorter disease duration was associated with a tendency toward higher concern. No significant associations were found between level of concern and age groups (P = .888), habitat (P = .803), age at onset (P = .218), healthcare sector (P = .113), comorbidity (P = .231), sex (P = .685), or educational level (P = .765).
Perceptions of DBS
When asked about the primary goal of DBS, 44.1% of participants identified symptom improvement, while 25.9% believed it offers a complete cure, 9.5% viewed it as a full and permanent replacement for medication, and 20.5% reported not knowing the purpose of the procedure. Surgical complications were the most reported perceived risk (49.7%), followed by mood or behavior changes (41.6%) and device failure (31.1%). Additionally, 15.9% stated they did not know the risks, and 4.1% believed there were none. Regarding availability in Morocco, 53.5% viewed DBS as available but limited, 23.2% as unavailable, and 12.4% reported not knowing about its availability. The main barriers reported were high cost (24.3%), fear of surgery (23.0%), lack of specialists (19.7%), and insufficient information (18.4%), while 9.5% expressed distrust in outcomes (Table 4).
Knowledge scores differed significantly according to participants’ perception of DBS-related risks (P = .007). Higher scores were observed among those who selected only 1 risk, such as mood/behavioral changes (mean = 5.33) or device failure (mean = 5.00), while the lowest scores were seen in participants who selected all 3 major risks (mean = 2.95). Perceptions of DBS availability showed a trend toward significance in relation to knowledge scores (P = .080), with higher scores among participants who responded “I don’t know” (mean = 5.13) or considered DBS “easily available” (mean = 4.88), compared to those who believed it was not available (mean = 4.12).
Most sociodemographic and clinical factors showed no significant associations with perception items. Perceptions of purpose, availability, or barriers were not significantly related to age, habitat, age at onset, healthcare sector, comorbidity, sex, education, insurance coverage, or disease duration. Only perceptions of DBS-related risks showed a significant association with disease duration groups (P = .010). Patients with shorter disease duration (≤5 years) more frequently selected a single risk, such as surgical complications or mood/behavioral changes, or reported not knowing any risks. In contrast, those with longer disease duration (6-10 years and >10 years) were more likely to identify multiple risks simultaneously.
Discussion
This study provides one of the first comprehensive assessments of PD knowledge and perceptions of advanced therapies among patients in Morocco. The average knowledge score among participants was moderate, with over one-third of participants scoring below the mean, indicating important gaps in understanding. These findings align with previous research reported limited knowledge among both individuals with PD and the general population.13–15
Participants with a high school education or above had significantly higher PD knowledge scores than those with lower education levels (intermediate school, elementary school, or no formal education). These findings are consistent with previous studies showing that education significantly influences awareness and understanding of PD,13,16–18 and they also reinforce the construct validity of our questionnaire by confirming expected associations. Furthermore, education level has been identified as a key determinant of patient understanding regarding advanced therapies such as DBS. 19
In our study, 31.9% of participants reported prior awareness of DBS—a moderate rate compared to previous reports, where awareness has ranged widely from 18% to 91.3% among PD populations.15,20–22 In terms of willingness to undergo DBS if recommended by a physician, 39.4% of participants in our study responded positively, a proportion comparable to that reported in another study, where 43% of patients accepted DBS when it was offered by their physician. 23 In a separate study, 80% of patients who eventually accepted DBS cited increased confidence in their clinician's recommendation as the main reason for their decision, 24 underscoring the pivotal role of physician–patient communication in shaping treatment choices.
Willingness was higher among our patients from the private sector and those with longer disease duration. This may be related to greater financial means among private sector patients, as household income has been shown to influence PD awareness, 16 which may in turn increase openness to advanced treatments like DBS. Longer disease duration may also prompt patients to actively pursue information to cope with progression, alleviate fears associated with its worsening, and evaluate or consider advanced treatment options such as DBS.19,25 Moreover, PD stage was a strong determinant of willingness, with advanced-stage patients showing greater openness to DBS. This likely reflects their increased symptom burden and limited response to conventional therapies, making them more receptive to advanced treatment options as a last resort to improve their condition.
However, important misconceptions about DBS persist. In our study, 25.9% of participants believed it offers a complete cure, despite it being a symptomatic treatment only, while 9.5% viewed it as a full and permanent replacement for medication. Similar misconceptions were reported in a previous study, where 18.5% of patients believed that PD could be cured by DBS surgery. 13 Similarly, the Know PD survey noted that 20% of participants erroneously assumed DBS would cure the disease. However, none of the patients who had actually undergone the procedure held this belief. 18 Misconceptions at this stage may lead some patients to pursue DBS under the false belief that it provides a cure, especially when clinician language is vague or overly reassuring. This highlights the importance of clear, accurate communication to ensure decisions are based on realistic expectations rather than misinformation.
In a study, the most frequently reported reasons for declining DBS were fear of adverse events, financial burden, and hope for future nonsurgical treatments. 24 Similarly, our study found surgical complications as the most reported perceived risk, followed by mood or behavior changes and device failure. Interestingly, well-insured patients expressed greater concern about DBS, likely because their broader access to specialists and information made them more aware of potential side effects—leading to increased concern. Studies from regions with broad public insurance coverage have similarly found that many patients express concerns about DBS and tend to view it as a treatment of last resort, considered only after all other options have been exhausted.26,27 Further research is needed to clarify how insurance influences DBS perception.
The study identified several barriers to accessing DBS in Morocco, with high cost, fear of surgery, limited availability of specialists, and lack of information being the most frequently cited. These findings are consistent with previous reports, where financial burden, 24 fear of the surgical procedure, 28 and concerns about potential adverse effects21,24,28 were noted as common factors contributing to patients’ reluctance and hesitation to consider DBS. Addressing these barriers requires coordinated efforts to improve public coverage for DBS, expand access to trained specialists, and provide structured counseling during neurology consultations. Based on our findings, we also recommend strengthening patient education through clear, culturally appropriate explanations in the local language. Educational tools such as workshops, printed materials, and community outreach—shown effective in other Arab settings 29 —could help correct misconceptions and support informed decision making. Finally, improving the availability and affordability of DBS, particularly in underserved regions, is essential to ensure equitable access.
Limitations
This study has several limitations. The use of self-reported data may introduce recall or social desirability bias; however, to minimize misunderstanding and ensure clarity, we used Moroccan dialect, the investigator repeated and clarified questions when needed, and patients were assisted by accompanying persons. Anonymity was also maintained throughout data collection to reduce social desirability bias. The sample was restricted to the Casablanca-Settat region, which may limit the generalizability of findings to other Moroccan regions. Although participants were recruited from multiple urban and rural healthcare centers to enhance variability and representativeness, the results may not fully reflect the perspectives of populations with distinct sociocultural and economic backgrounds. Future research should consider longitudinal designs to assess changes in knowledge and perceptions over time and evaluate the impact of targeted educational interventions.
Conclusion
The study reveals significant gaps in patients’ knowledge of PD and their perceptions of DBS in Morocco. Targeted educational initiatives and systemic improvements in healthcare delivery are essential to enhance patient understanding and facilitate informed decision making regarding DBS.
Supplemental Material
sj-docx-1-jpx-10.1177_23743735251380956 - Supplemental material for Knowledge of Parkinson's Disease, Perceptions of Deep Brain Stimulation, and Attitudes Toward Its Use Among Patients in Morocco: A Cross-Sectional Study
Supplemental material, sj-docx-1-jpx-10.1177_23743735251380956 for Knowledge of Parkinson's Disease, Perceptions of Deep Brain Stimulation, and Attitudes Toward Its Use Among Patients in Morocco: A Cross-Sectional Study by Mohamed Daghi, Abdelhakim Lakhdar and Hicham El Otmani in Journal of Patient Experience
Footnotes
Acknowledgments
We extend our sincere appreciation to Dr Zineb Abdulhakim, Dr Youssef Benmansour, Dr Meriem Bourezgui, Dr Ouafae Fennich, Dr Dounia Manni, Dr Hind Mouallif, Dr Fettouma Moutaouakil, Dr Salwa Oumari, Dr Sara Sabiry, Dr Zineb Sekkat, and Dr Abdelhaq Zaim for their invaluable support and assistance in preparing the patients and environment for this study.
Author Contributions
The conceptualization of this study was led by MD, HEO, and AL. Data curation and investigation were performed by MD and HEO. The methodology was designed by MD and HEO. Project administration was managed by MD and HEO. Supervision was provided by AL and HEO. The original draft was written by MD, and all the authors contributed to the review and editing.
Data Availability Statement
Data supporting the findings of this study are available upon reasonable request from the corresponding author. Data sharing will be conducted in accordance with institutional guidelines and ethical considerations.
Declaration of Conflicting Interest
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethical Approval and Informed Consent Statements
The study was approved by the Ethics Committee for Biomedical Research at the Faculty of Medicine and Pharmacy of Casablanca (approval number 06/2023), and authorization was granted by the regional directorate of the ministry of health (approval number 5355). Written informed consent was obtained from all participants for their participation in the study and for the publication of the findings.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
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References
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