Study Overview
In recent years, the growing recognition of the impact of functional/dissociative seizures on patients has highlighted the need for effective assessment tools. This study employed an innovative e-Delphi method to create a patient-reported outcome measure specifically aimed at evaluating the severity of these seizures. The e-Delphi approach, known for its ability to gather expert consensus through multiple rounds of surveys conducted online, was chosen to ensure a comprehensive and collaborative development process that incorporated diverse perspectives.
The research included a panel of experts from various fields, including neurology, psychology, and patient advocacy, who contributed their knowledge and experiences pertaining to functional/dissociative seizures. This method allowed participants to provide feedback, which was then synthesized to refine the outcome measure iteratively. The collaborative nature of the e-Delphi technique not only fostered a wide range of insights but was also instrumental in ensuring that the final measure would be relevant and patient-centered.
The study’s development process involved multiple rounds of questioning, where experts rated the importance of various potential items for inclusion in the outcome measure. Following each round, feedback was shared among participants, enabling them to reconsider their responses in light of the group’s collective wisdom. This iterative cycle continued until consensus was reached, resulting in a robust tool designed to capture the nuances of the patient experience during seizures.
By focusing on patients’ reported outcomes, this research aims to bridge the gap between clinical assessments and the lived experiences of those affected by functional/dissociative seizures. Ultimately, the outcome measure developed through this e-Delphi approach is intended to serve as a vital instrument in both research and clinical settings, facilitating better understanding and management of these complex conditions.
Methodology
The methodology employed in this study utilized the e-Delphi technique, a structured communication process that engages a panel of experts through a series of iterative rounds directed towards reaching a consensus. To initiate this, a diverse group of specialists was carefully selected based on their expertise in neurology, mental health, and patient care related to functional/dissociative seizures. This multidisciplinary approach ensured a broad spectrum of insights and experiences, which were vital for developing a comprehensive patient-reported outcome measure (PROM).
The first phase involved creating a draft list of potential items for inclusion in the PROM, drawn from a comprehensive review of existing literature, patient narratives, and clinical guidelines. This draft served as the foundational framework for subsequent rounds of evaluation. Researchers used qualitative data from interviews and focus groups with patients, identifying specific aspects of seizure experiences that significantly impacted their daily lives, such as the frequency of seizures, their psychological effects, and the social implications.
During the first round of the e-Delphi process, panel members were presented with the initial item list and asked to rate each item’s relevance and importance on a Likert scale. Participants were also encouraged to provide open-ended feedback and suggest additional items for consideration. This approach maximized the richness of the data collected while allowing for personal insights that might not have been captured in a more rigid framework.
After analyzing the results from round one, the research team compiled a summary of the feedback and shared it with the panel. This transparency allowed experts to reflect on their initial ratings and consider alternate perspectives when they participated in the next round. This iterative process continued for a total of three rounds, with adjustments made at each step based on the discussions and data emerged from previous rounds.
Throughout this process, the researchers tracked not only the consensus on item inclusion but also the degree of divergence in opinions. A predefined consensus threshold was established, which stipulated that at least 70% agreement was required for an item to be retained in the final PROM. This was crucial to ensure that the resulting tool accurately represented the collective insights of the experts involved.
In addition to rating the relevance of individual items, the e-Delphi method incorporated a statistical analysis to assess the reliability of the consensus reached. The degree of agreement for each item was quantified using descriptive statistics, ensuring that the final measure was both evidence-based and reflective of the experts’ consolidated views. Once consensus was achieved, a final version of the PROM was developed, clearly defining each item along with the intended outcomes it would measure. This careful crafting aimed to enhance clarity, ensuring that patients would readily understand and relate to the questionnaire items.
Upon completion of the rounds, the panel received a comprehensive report summarizing the entire process, including key discussions, decisions made, and the rationale behind the inclusion of specific items. The final PROM was then prepared for validation and pilot testing with a sample of patients, laying the groundwork for its practical application in both clinical and research settings.
Key Findings
The outcome of the e-Delphi process provided significant insights into the severity and impact of functional/dissociative seizures from the perspective of experts and, importantly, patients. A total of 15 core items were determined to be essential for inclusion in the new patient-reported outcome measure (PROM). These items were meticulously crafted to encompass various dimensions of the seizure experience, reflecting both the clinical and personal aspects of living with the condition.
Among the key findings, the identified items included aspects such as the frequency of seizures, the duration of episodes, and the intensity of physical and emotional symptoms both during and following seizures. Participants emphasized the importance of capturing the psychological distress associated with seizures, highlighting factors like anxiety and fear of future episodes, which can significantly hinder the quality of life for patients. Additionally, social implications such as the impact of seizures on work, relationships, and daily activities were regarded as critical dimensions to assess.
The iterative nature of the e-Delphi method allowed for a comprehensive reflection of consensus among experts, with a noted agreement rate exceeding the established threshold of 70% for all included items. This high level of consensus speaks to the collaborative agreement on the multifaceted nature of functional/dissociative seizures and underscores the shared understanding of what constitutes the patient’s experience.
Furthermore, feedback from participating experts revealed a common desire for a PROM that is not only scientifically rigorous but also easily comprehensible for patients. The language used in the final items was simplified and clarified, ensuring that patients could engage with the measure without confusion. This accessibility was deemed vital for encouraging patient participation in both self-assessment and more substantive conversations with healthcare professionals.
The statistical analyses conducted throughout the e-Delphi rounds indicated a high level of reliability in the consensus achieved. The data suggested that this outcome measure is poised to be a valid tool for both clinical and research applications. As the PROM progresses toward validation and pilot testing, the foundational insights garnered through expert consensus provide a solid basis for ensuring that the measure accurately reflects the nuances of patient experiences.
These findings not only affirm the necessity for targeted outcome measures in evaluating functional/dissociative seizures but also open avenues for future research. A comprehensive PROM could facilitate longitudinal studies assessing treatment efficacy, leading to more tailored interventions that effectively address the specific needs of individuals suffering from these complex conditions.
Clinical/Scientific Implications
The implications of this research extend significantly into both clinical practice and scientific inquiry, highlighting the need for nuanced understanding and assessment of functional/dissociative seizures. By providing a validated patient-reported outcome measure (PROM), the study fosters a more patient-centered approach to care that could reshape how healthcare providers engage with those experiencing these complex seizures. Such a tool can empower patients by giving them a structured platform to articulate their experiences, thereby improving communication with clinicians who may not fully grasp the intricacies of their daily struggles.
Implementing this PROM in clinical settings can lead to more personalized treatment plans, as it encourages healthcare providers to consider not only the clinical symptoms but also the broader psychosocial impacts of seizures on patients’ lives. The insights from the PROM may guide healthcare professionals in identifying specific areas requiring intervention, thus enhancing the overall quality of care. For instance, recognizing the emotional toll and social ramifications, such as anxiety or fear of recurrence, can facilitate more appropriate therapeutic strategies, including psychological support or lifestyle modifications tailored to individual patient needs.
Moreover, the introduction of this PROM into clinical practice could provide a standard measure for evaluating treatment outcomes, allowing for standardized comparisons across different patient populations and therapeutic approaches. This consistency is crucial for clinical trials and research initiatives, as it equips researchers with a reliable tool to assess the efficacy of various interventions targeting functional/dissociative seizures. Longitudinal studies utilizing the PROM could unveil trends and changes in seizure severity and patients’ quality of life over time, ultimately informing best practices and potentially leading to improved treatment protocols.
The findings also underscore the potential for this PROM to become a benchmark for future research endeavors aimed at understanding functional/dissociative seizures. By documenting variations in patient-reported experiences, this measure can pave the way for further exploration into the etiology, contributing factors, and treatment pathways for these seizures. Additionally, the high level of consensus among experts reinforces the credibility of the tool, suggesting that similar methodologies could be employed to develop other patient-centered measures across various medical conditions.
The development of this PROM represents not just a methodological achievement but a significant step towards enhancing the recognition of patient perspectives in the management of functional/dissociative seizures. It signals a shift toward a healthcare framework that values and incorporates the voices of those living with these conditions, ultimately aiming for better clinical outcomes and improved quality of life for patients.
