Concept Elicitation Within Patient-Powered Research Networks: A Feasibility Study in Chronic Lymphocytic Leukemia

McCarrier, K.P.; Bull, Scott; Fleming, Sarah; Simacek, Kristina; Wicks, Paul; Cella, David; Pierson, Renee

doi:10.1016/j.jval.2015.10.013

Cited by 24 publications

(19 citation statements)

References 21 publications

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“…This analysis used a natural language processing platform and manual expert curation to extract information about issues relevant to patients with AS from unstructured online narratives. Our study shows that patients are proactively discussing their AS experiences online and generating large volumes of data, which may serve as a supplement to other costly and time-consuming recruitment initiatives to collect patient-reported data [ 41 ]. These results confirm the high unmet need in patients with AS and provide additional insights into patient-reported disease burden and functional burden.…”

Section: Discussionmentioning

confidence: 99%

Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis

et al. 2018

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IntroductionOnline communities contain a wealth of information containing unsolicited patient experiences that may go beyond what is captured by guided surveys or patient-reported outcome (PRO) instruments used in clinical settings. This study described patient experiences reported online to better understand the day-to-day disease burden of ankylosing spondylitis (AS).MethodsUnguided, English-language patient narratives reported between January 2010 and May 2016 were collected from 52 online sources (e.g., general/health social networking sites, patient–physician Q&A sites, AS forums). Using natural language processing combined with manual curation, patient-reported experiences within narratives were evaluated and categorized into social, physical, emotional, cognitive, and role activity (SPEC-R) concepts to assess functional impairment. The same SPEC-R categorization was applied to 5 AS-specific PRO instruments to evaluate their coverage of concepts extracted from patient narratives.ResultsA total of 34,780 narratives from 3449 patients with AS were included. Physical aspects of AS (e.g., pain and mobility) were most commonly reported by patients (86.7%), followed by emotional (32.5%), cognitive (23.6%), role activity (8.7%) and social (5.1%). Some frequently discussed subconcepts were effectively captured by ≥ 2 PRO instruments, such as pain (65.3%), asthenia (19.9%), musculoskeletal impairment (19.9%), depression (9.9%), and anger/frustration (5.4%); others [e.g., anxiety (19.1%), mental impairment (3.2%), impulsivity (2.9%)] were not addressed by any of the PRO instruments.ConclusionThese findings highlight the importance of analyzing patient experiences beyond clinical trial settings and physician reports; continuous assessment of existing PRO instruments in collaboration with patients may increase their utility in real-world settings.FundingNovartis Pharmaceuticals Corporation.Electronic supplementary materialThe online version of this article (10.1007/s12325-018-0669-1) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis

et al. 2018

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“…More specifically, three of these publications presented the AEs identified on the forums included [ 24 , 28 , 30 ], while the fourth publication focused on comparing AEs mentioned online to AEs reported to the FDA [ 25 ]. Another three studies collected health data on quality of life (QoL) [ 26 , 27 , 31 ]. Each study used different QoL instruments, such as the Concerns About Recurrence Scale scores [ 31 ], and short form-36 health survey [ 26 ].…”

Section: Resultsmentioning

confidence: 99%

Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology

et al. 2018

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BackgroundAn element of health technology assessment constitutes assessing the clinical effectiveness of drugs, generally called relative effectiveness assessment. Little real-world evidence is available directly after market access, therefore randomized controlled trials are used to obtain information for relative effectiveness assessment. However, there is growing interest in using real-world data for relative effectiveness assessment. Social media may provide a source of real-world data.ObjectiveWe assessed the extent to which social media-generated health data has provided insights for relative effectiveness assessment.MethodsAn explorative literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to identify examples in oncology where health data were collected using social media. Scientific and grey literature published between January 2010 and June 2016 was identified by four reviewers, who independently screened studies for eligibility and extracted data. A descriptive qualitative analysis was performed.ResultsOf 1032 articles identified, eight were included: four articles identified adverse events in response to cancer treatment, three articles disseminated quality of life surveys, and one study assessed the occurrence of disease-specific symptoms. Several strengths of social media-generated health data were highlighted in the articles, such as efficient collection of patient experiences and recruiting patients with rare diseases. Conversely, limitations included validation of authenticity and presence of information and selection bias.ConclusionsSocial media may provide a potential source of real-world data for relative effectiveness assessment, particularly on aspects such as adverse events, symptom occurrence, quality of life, and adherence behavior. This potential has not yet been fully realized and the degree of usefulness for relative effectiveness assessment should be further explored.

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“…Search terms on Pubmed such as “altitude adjusted lachrymosity syndrome”, “crying on planes”, “crying altitude”, “altitude tearfulness”, and “pseudobulbar affect altitude” failed to yield any previous studies. The use of online “grey literature” or social media for concept elicitation has been previously established as feasible ( McCarrier et al, 2016 ), so a search on Google was performed for “Crying on planes”, which produced a range of blogs, newspaper articles, and podcasts which anecdotally described the phenomenon in great detail ( Appendix S1 ).…”

Section: Methodsmentioning

confidence: 99%

No tears in heaven: did the media create the pseudo-phenomenon “altitude-adjusted lachrymosity syndrome (AALS)”?

Wicks

Lancashire

2018

PeerJ

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ObjectiveIn the media, numerous public figures have reported involuntary emotional outbursts arising from watching films on planes, resembling neurological phenomena such as pseudobulbar affect. Putative risk factors put forward include altitude, mild hypoxia, or alcohol. Our objective was to determine whether watching a film on an airplane is really more likely to induce involuntary, uncontrollable, or surprising crying than watching one on the ground, described in some social media as “altitude-adjusted lachrymosity syndrome” (AALS), or whether this is a pseudo-phenomena.MethodsAmazon Mechanical Turk survey participants (N = 1,084) living in the United States who had watched a film on a plane in the past 12 months were invited to complete an online survey. The main outcome measures were likelihood of crying in a logistic regression model including location of viewing, age, gender, genre of film, subjective film rating, annual household income, watching a “guilty pleasure” film, drinking alcohol, feeling tired or jetlagged, or having a recent emotional life event.ResultsAbout one in four films induced crying. Watching a film on a plane per se does not appear to induce involuntary crying. Significant predictors of crying included dramas or family films, a recent life event, watching a “guilty pleasure”, high film ratings, and female gender. Medical conditions, age, income, alcohol use, and feeling tired or jetlagged were not significant.ConclusionPeople reporting the pseudo-phenomena of AALS are most likely experiencing “dramatically heightened exposure”, watching as many films on a plane in a week’s return trip as they would in a year at the cinema. Such perceptions are probably magnified by confirmation bias and further mentions in social media.

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Concept Elicitation Within Patient-Powered Research Networks: A Feasibility Study in Chronic Lymphocytic Leukemia

Cited by 24 publications

References 21 publications

Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis

Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis

Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology

No tears in heaven: did the media create the pseudo-phenomenon “altitude-adjusted lachrymosity syndrome (AALS)”?

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