Understanding the patient perspective of epilepsy treatment through text mining of online patient support groups

He, Kai; Hong, Na; Lapalme-Remis, Samuel; Lan, Yangyang; Huang, Ming; Li, Chen; Yao, Lixia

doi:10.1016/j.yebeh.2019.02.002

Cited by 22 publications

(19 citation statements)

References 26 publications

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“…Key themes relating to treatment included the search for optimal personalized treatment strategies and coping with side effects. In discussing their findings, the authors commented that the fact that posters often share their treatment experiences and seek help from other posters may indicate that PWE are willing to engage in the decision-making process, but lack sufficient knowledge or perceive barriers for engaging directly with HCPs [7]. This idea is consistent with the findings from the current study in highlighting a pressing need for education among and between HCPs and PWE, in order to raise understanding on both sides.…”

Section: Discussionsupporting

confidence: 78%

“…The findings of this study are broadly consistent with those of a previous investigation that collected over 350,000 posts from three epilepsy support groups (https://connect.mayoclinic.org/, www. epilepsy.com, and www.coping-with-epilepsy.com) and utilized an analytical pipeline to identify patient conversation content via multiple text mining methods [7]. As in the current study, this investigation demonstrated that PWE used the online forums to seek information about medical treatments, share their experiences of treatment, and seek help from other posters.…”

Section: Discussionmentioning

confidence: 58%

See 1 more Smart Citation

Insights into the real-life experiences of people living with epilepsy: A qualitative netnographic study

Fazekas

Megaw

Eade³

et al. 2021

Epilepsy & Behavior

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A qualitative netnographic study of epilepsy conversations posted on public social media sites over a 12month period was conducted in order to identify key themes and issues for people living with epilepsy (PWE). A total of 264,706 conversations posted online between 03 November 2018 and 03 November 2019, which had originated in the UK, Spain, France, Italy, and Germany, were identified using pre-defined and piloted search terms. A random sample of these posts was then analyzed using natural language processing, and qualitative in-depth and contextual analysis. Key themes that emerged related to: disease awareness among the general public; the psychological and physical impact of seizures; the importance of ensuring proper sleep; understanding disease burden through time; finding treatment and managing side effects; and dealing with depression and anxiety. People living with epilepsy highlighted that seizures have a significant impact on mental as well as physical health and can cause limitations to all aspects of life. Fear of having a seizure in public is a major concern for PWE and the anticipation of seizures can worsen anxiety, causing patients to limit social interaction and often leading to social isolation, which may further exacerbate anxiety and depression. People living with epilepsy therefore advocate that greater attention be paid to the mental health impact of epilepsy. Treatment and its side effects were also a major aspect of the online conversation of PWE. Some PWE believe there is a lack of awareness or sensitivity among healthcare professionals, who may underestimate their concerns or not take sufficient time to discuss their needs. These findings therefore help sign-post issues of importance to PWE and areas in which their care may be improved.

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Section: Discussionsupporting

confidence: 78%

Section: Discussionmentioning

confidence: 58%

Insights into the real-life experiences of people living with epilepsy: A qualitative netnographic study

Fazekas

Megaw

Eade³

et al. 2021

Epilepsy & Behavior

View full text Add to dashboard Cite

show abstract

“…Building on our previous experiences and lessons learned from the content analysis of patients’ narratives, we propose a systematic framework to address the subjective nature of patients’ narratives [11,18-20]. This framework integrates text mining methods, the framework method, and deductive-inductive approach for content analysis and is composed of 4 main phases: (1) data collection, (2) data preparation, (3) content analysis, and (4) interpretation of the results.…”

Section: Methodsmentioning

confidence: 99%

A Systematic Framework for Analyzing Patient-Generated Narrative Data: Protocol for a Content Analysis

et al. 2019

Self Cite

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BackgroundPatient narrative data in online health care forums (communities) are receiving increasing attention from the scientific community for implementing patient-centered care. Natural language processing (NLP) methods are gaining more and more attention because of the enormous data volume. However, state-of-the-art NLP still cannot meet the need of high-resolution analysis of patients’ narratives. Manual qualitative analysis still plays a pivotal role in answering complicated research questions from analyzing patient narratives.ObjectiveThis study aimed to develop a systematic framework for qualitative analysis of patient-generated narratives in online health care forums.MethodsOur systematic framework consists of 4 phases: (1) data collection, (2) data preparation, (3) content analysis, and (4) interpretation of the results. Data collection and data preparation phases are constructed based on text mining methods for identifying appropriate online health forums for data collection, differentiating posts of patients from other stakeholders, protecting patients’ privacy, sampling, and choosing the unit of analysis. Content analysis phase is built on the framework method, which facilitates and accelerates the identification of patterns and themes by an interdisciplinary research team. In the end, the focus of interpretation of the results phase is to measure the data quality and interpret the findings regarding the dimensions and aspects of patients’ experiences and concerns in their original contexts.ResultsWe demonstrated the usability of the proposed systematic framework using 2 case studies: one on determining factors affecting patients’ attitudes toward antidepressants and another on identifying the disease management strategies in patient with diabetes facing financial difficulties. The framework provides a clear step-by-step process for systematic content analysis of patient narratives and produces high-quality structured results that can be used for describing patterns or regularities in patients’ experiences, generating and testing hypotheses, and identifying areas of improvement in the health care systems.ConclusionsThe systematic framework is a rigorous and standardized method for qualitative analysis of patient narratives. Findings obtained through such a process indicate authentic dimensions and aspects of patient experiences and shed light on patients’ concerns, needs, preferences, and values, which are the core of patient-centered care.International Registered Report Identifier (IRRID)RR1-10.2196/13914

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“…The acceptability of these techniques has been applied to a variety of healthcare venues to explore patient's satisfaction with bariatric surgery, diabetes therapy, and cardiovascular disease. [21][22][23] Qualitative approaches such as CA may offer opportunities to not only improve care and care delivery but also to partially explain differences in outcomes. 24 For example, a recent study of patients residing in nursing homes used CA that revealed critical areas of care quality as well as potential areas for improvement.…”

Section: Content Analysis As a Qualitative/quantitative Approach To Mmentioning

confidence: 99%

Quantifying Experiences with Telepractice for Aphasia Therapy: A Text Mining Analysis of Client Response Data

2020

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Measures of satisfaction following treatment for aphasia have been limited. The challenge associated with reduced verbal output among many persons with aphasia (PWA) has reportedly been a key reason measures of treatment satisfaction have been limited. A novel approach to measure treatment satisfaction is the use of content analysis (CA), which uses the presence of certain words, themes, or concepts to explore outcomes such as treatment satisfaction particularly among individuals who generate limited output. CA utilizes responses and response patterns to assign meaning to client responses. The aim of this study was to use CA to measure posttreatment satisfaction with a telepractice approach for aphasia treatment. Seventeen PWA received 12 treatment sessions over a 6-week period. At the conclusion of the treatment, CA was utilized to explore patient satisfaction with this treatment approach. The participants reported an overall positive sentiment for the telepractice approach. Two primary topics emerged which were healthcare provider and healthcare delivery, where text analysis revealed discussion of these topics to be centered around being “helpful” and “being effective.” This study demonstrated that CA can be an effective approach for determining satisfaction with aphasia treatment particularly among PWA with limited verbal abilities.

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Understanding the patient perspective of epilepsy treatment through text mining of online patient support groups

Cited by 22 publications

References 26 publications

Insights into the real-life experiences of people living with epilepsy: A qualitative netnographic study

Insights into the real-life experiences of people living with epilepsy: A qualitative netnographic study

A Systematic Framework for Analyzing Patient-Generated Narrative Data: Protocol for a Content Analysis

Quantifying Experiences with Telepractice for Aphasia Therapy: A Text Mining Analysis of Client Response Data

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